Karen’s Journal
of CSF Leak Headaches and
Chronic Pain
How Intracranial Hypotension
and the Fluoroquinolone
Antibiotic Levaquin®
(Levofloxacin) Killed Me
Shared by
Robert Paddock
The Designer-III Company, LLC.
Note that this web page was generated from a physical book, it did not always translate the format correctly.
Please see http://www.kpaddock.com/book on how to order a printed or Kindle version that is correctly formatted.
100% of the royalties from those go to the Spinal CSF Leak Foundation. Please support them.
The Designer-III Company, LLC.
Franklin, Pennsylvania
ISBN 978-1-5173325-3-2
© 2017/2018/2019 Robert Paddock. All rights reserved. No portion of this book, except for review, may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopying, recording, or with technology yet to be imagined—without the written permission of Robert Paddock.
If you fell, I can help you, or for more information, contact me through my email at bob.paddock@gmail.com or by phone at 1-814-314-9158.
In the Kindle version of the book, the colored links lead back to the relevant section of Karen’s Journal website or other site for more information. The print edition contains Quick Response Code (QR Codes) images for important web links. All smart phones either come with or can have a QR Code reader app installed. Taking a picture of the code will enter the website address on to your phone or tablet where the link can be opened or pass it on to someone without having to type long addresses on the device.
Most everything in this book, and additional information that is constantly being added, is available online at http://www.kpaddock.com, which you can access using the QR code at the right.
See: http://spinalcsfleak.org/shop to order additional copies. Proceeds from books purchased at the above link go directly to the Spinal CSF Leak Foundation.
National Suicide Prevention Lifeline
http://www.suicidepreventionlifeline.org
1-800-273-TALK (8255)
Spinal CSF Leak Foundation Logo
World Health Organization on Chronic Pain
Karen not knowing she was writting this book
Karen’s Posthumous Introduction
Karen’s Father Has a Heart Attack
“...And the Silence of the Dead...”
Is There a Genetic Connection?
Garth Crosses Over the Rainbow Bridge
More on the Genetic Connection
FDA Labeling Changes for Fluoroquinolne Antibiotics29
Bayer, Maker of Cipro and Avalox Is Warning Doctors Not to Use Them!
Meeting Award Wining Movie Producer Tina Petrova to Film Karen’s Story35
Medical Electronics Imaging to Aid Sufferers of Cerebral Spinal Fluid Leaks38
Medical Electronics Imaging to Aid Sufferers of Cerebral Spinal Fluid Leaks
Blake Resolution Designates “Spinal CSF Leak Awareness Week” 41
Pain Nation with Ken McKim - S2E2: Karen Paddock’s Story
Do Fluoroquinolones Cause Cerbrospinal Fluid Leaks?
Intracranial Hypotension Symposium 2017
FDA’s MedWatch Adverse Event Reporting Program
Interactive Global Map of CSF Leaks10
Biography of Robert “Hubby” Paddock
Introduction to the Medical History of the Late Karen Shettler Paddock
The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?
Bayer, Maker of Cipro and Avalox Is Warning Doctors Not to Use Them!
Meeting Award Wining Movie Producer Tina Petrova to Film Karen’s Story35
Medical Electronics Imaging to Aid Sufferers of Cerebral Spinal Fluid Leaks38
Blake Resolution Designates “Spinal CSF Leak Awareness Week” 41
Medical Disclaimer
All content found in this book and on the Website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this book or on the Website.
If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately. There is no intention to recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided is solely at your own risk. The book, the Website and its Content are provided on an “as is” basis.
Avalox®, Avelon® and Cipro® are registered trademarks of Bayer AG. Levaquin® is a registered trademark of Johnson & Johnson or its affiliated companie [SIC]; Janssen Pharmaceuticals. Levaquin®’s seventy-one pages of mostly side effects warnings may be found here..
Other product and company names mentioned herein may be the trademarks of their respective owners. Rather than use a trademark symbol with every occurrence of a trademarked name, we are using the names only in an editorial fashion, with no intention of infringement of the trademark.
The information in this book is distributed on an “as is” basis, without warranty. While every precaution has been taken in the preparation of this work, neither the author or reviewers nor The Designer-III Company, LLC nor its associates shall have any liability to any person or entity with respect to any loss or damage caused or alleged to be caused directly or indirectly by the information contained in it.
Chronic Pain is one of the most
underestimated health care problems
in the world today. We believe
Chronic Pain is a disease
in its own right.
Professor Harold Breivik,
World Health Organization
About This Book
This book is not to memorialize Karen, rather it is to shine light upon the conditions from which she suffered and to help those she left behind.
This book is dedicated to those that can not stand up because of Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks, as well as those that can not lay down from Idiopathic Intracranial Hypertension (IIH); those so incapacitated from Chronic Pain to have a life; those maimed by fluoroquinolone antibiotics left unable to walk on their own for the rest of their lives; those too crippled by Ehlers-Danlos Syndrom (EDS) to hold a pen to write their own story and those with invisible disabilities and rare diseases that the medical establishment has forsaken. This book is your story not Karen’s, the one that your health condition will not allow you to write. This is the story that you wish you could get your friends relatives and doctors to understand.
I shared a large part of Karen’s life, writing this book has been a tear filled experience, I cry as I type these words. Help Karen and I find peace by learning from Karen to create new treatment methods, remove dangerous medications from the market and to change the medical establishment to treat those with Chronic Pain et. al. with respect and dignity.
Karen gave her life for this book,
please make something good come of that
and help change the world for the better for all.
Since Karen’s death many people have told me that they wish they had known Karen, or that they had spent the time to get to know her better. This book is one way that you can get to know her. No one knew how smart she truly was. Each of us is to quick to judge without spending time to learn the journey the other person is on. Karen has shown us all by her death that tomorrow is promised to no one. Do not wait until someone is gone to want to get to know them...
The cover photo is Karen’s wedding photo in 1993. She had hope...
There is one thing you will find that this book is not. It is not polished proper grammar and spelling, such as using the less common spelling tendinitis, but accepted, in place of the medical standard tendonitides. Karen always felt self-conscious about communicating in writing and in person. She was always studying ‘people skills’ type books. The errors in Karen’s writing have been left deliberately as she wrote them, they are a reflection of her state of mind at that moment. In addition, entries from Karen’s Journal that have no time stamp are from notes she made to herself. The exact date or time are unknown.
Dawn Lee gave an analogy I love to illustrate how CSF Leaks work in their book Called to Suffer http://www.calledtosuffer.com about her daughter Maegan’s CSF Leak:
“... Pretend Maegan is an hourglass filled with sand. The hourglass is fine lying horizontal in the bed. Once the hourglass is ‘upright,’ the sand starts running out. Eventually all the sand is gone. With Maegan she is better lying horizontal. Once she sits or stands, the CSF fluid starts to leak out at a more rapid rate. When she had been ‘upright’ for a period of time, like the sand, the CSF fluid drains to a point where the pain is unbearable. We must calculate her time up by the second. Can you imagine? Can you imagine knowing the longer you are up the more sever the pain is going to get. You know it is coming. ...” Used with permission, see September 27, 2015 entry later in this book.
I want to thank Tambra Warner Sabatini for helping me put this book together. If she can sell ice cream in a snow storm, she can make your own book a reality.
Sincerely, Robert “Hubby” Paddock August 7, 2018.
Foreword
This glimpse into Karen’s own writings offer hints of the depth of her suffering, yet like many with chronic disabling illness, much of what she endured was not openly shared. Sadly, devastatingly, it is only after her suicide that a greater awareness of what she endured has come to light.
I never met Karen. I became aware of her story after she ended her own life. Her husband, Bob, has been tireless in raising awareness about the health issues from which she suffered.
She was being treated for spinal CSF leaking. My understanding is that she endured disabling symptoms for decades before a diagnosis. At times her suffering was trivialized or dismissed, at other times, she was met with compassion in the medical world. She learned to navigate the waters of our troubled health care system with variable degrees of success, like so many with chronic illness.
For those with spinal CSF leaking, despite frequent profound disability, the correct diagnosis remains elusive for months, years, and even decades, as in Karen’s case. Even after a diagnosis is made, timely access to appropriate diagnostics and treatments is often far from optimal. The degree of suffering and disability is too often underestimated. The large gap between actual care and optimal care is what motivated me to co-found Spinal CSF Leak Foundation. By raising awareness, we hope to lessen such suffering. We can all learn from Karen’s experience. We need to.
Connie Deline, MD, Co-founder, Spinal CSF Leak Foundation
Karen Shettler Paddock 1969 - 2013
She did not know she was writing her own book.
Karen’s Posthumous Introduction
My name is Karen Shettler Paddock. I am dead. I committed suicide on August 7th, 2013 as I could no longer stand the excruciating headache caused by Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. A condition that is more common than many think (for example actor George Clooney had/has a CSF Leak and considered suicide), yet it is so unknown that some doctors argue the condition does not even exist.
It has been estimated that ten percent of the 30,000,000 suffering from migraine headaches per day are actual suffering from this condition, that is three million (3,000,000) people per day!
Not even my love for my husband, Bob, love for my dog, Garth, and family, could keep me going, which is how powerful the pain from a CSF Leak/IH can be.
I want this book and my website to be a resource of CSF Leaks (CSFL) and the few other conditions that cause similar pain. None of those left behind foresaw me taking my own life; they are devastated.
This is My Story of my complete medical history and life so that you do not have to repeat our mistakes and will get the correct treatment that you need. People tell Hubby they are in tears by the time they reach the end of My Story on my website that this book is based upon.
The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?
Dr Ian Carroll, MD, MS Assistant Professor of Anesthesiology, Preioperative and Pain Medicine of Stanford University Medical Center has created a hour- plus video explaining CSF Leaks. Make sure your family watches it with you, it will help them understand!
The last picture ever taken of me, about two weeks before my death, hope is gone...
“Karen’s first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.”
The Derrick Newspaper front-page story, September 8, 2014.
This is the single most important take away I want you to have from this book. Twenty-plus years ago, this is all that needed to happen, a doctor saying this: “You have a headache when you are upright, but not laying down. Sounds like a Spinal CSF Leak. Lets get you sealed and healed…”
Running for Karen
“I was a passionate runner prior to my csf leak. This year I wanted to participate in our city’s annual 4-mile run/walk event. I really didn’t think I could do it, but it was Karen’s story that kept me going. She went through so much for so long, that I knew I could endure some pain to honor her. This one is for you, Karen Shettler Paddock.” ~ Janelle Hermes Hibiske —2013
“I used to be an avid runner, but am grateful that once a year I have been able to participate in our city’s annual 4-mile. This is the second year that Karen’s strength and knowing the pain she went through for so long has kept me going and my daughter joined in too. So this is for you Karen Shettler Paddock… —2014” The sign reads “This is for you Karen. We will never forget.”
The photos were taken at Parkview Field
in Fort Wayne, Indiana, which is where
the finish line is for the events.
Introduction to
the Medical History of the Late
Karen Shettler Paddock
I am Bob, Karen’s husband of nearly twenty years (our 20th anniversary was only a few days after her death). I am writing Karen’s history so that others may learn from the things we did right and the things we did wrong during her twenty-four-year-long battle with Chronic Pain. This was a battle she ultimately lost through her suicide when she could no longer take the pain from Intracranial Hypotension, caused by leaking Cerebrospinal Fluid (CSF).
What follows is mostly her own words that I’ve taken from emails and 9,437 Facebook private messages.
I have removed items that are not relevant to her health and items that would identify who she is corresponding with to protect their identity (many are distraught that they did not know how bad Karen was and they did not help her. As you will see, we had no way to know).
Glossary of Terms in Karen’s Writing
These are not necessarily the accepted medical terms.
BP = Blood Patch; properly Epidural Blood Patch (EBP).
ER = In context of medication means Extended Release.
FB = Face Burn or Facebook, depending on context.
HP = High Pressure.
LP = Low Pressure or Lumbar Puncture, depending on the context.
OP = Opening Pressure.
RA = Rheumatoid Arthritis.
FV = Full Volume, as Full Volume Blood Patch.
September 3, 1969
I was born. Nearly a month over due.
1974, age five
I hide the pain of a broken leg for four days.
I jumped off a stage at the local community building. I broke my right leg. In my five-year-old mind I was afraid that my parents would be mean to me if they found out so I hid the pain. My sister, Debbie, realized something was wrong after four days and told our parents. Also around this age, I fell off a swing. It hurt.
[Even at this young age Karen dealt with hiding pain from people. Falling off the swing will cause her issues later in life.]
June 5, 1987
Today I graduated high school, in the ‘High Scholastic Standing’ range of 3.00 to 3.60 GPA. Looking forward to life…
October 20, 1989
I was in a car accident today. I was on a one way street in Clarion about to turn left onto a two way street, when someone tried to pass me. They hit the driver side back wheel. Car is slightly bent, looks like it will be okay. I don’t think I’m hurt.
[I don’t know that there is any significance to this? My father died on October 20th many years later.]
Sunday, August 23, 1992
Before we left for the Warren Hamfest today, in Bob’s parent’s kitchen he asked, “Would you like to get married?” I said yes.
[Karen was first licensed as N3ITJ, later to upgrade to Advance Class after taken a test in technical proficiency and 13 WPM Morse Code to be come known as KD3ZU. She maintained the local amateur radio repeater’s software for many years.]
Sometime in the early 90’s
[Karen always made notes to herself to discuss with the doctor. From the $8000 amount this is very near her accident. We probably spent a million dollars or more when you account for the insurance, and even now, more than a year after her death when I’m adding this, the expenses are still coming in!]
Friday, Oct 22, 2010 at 10:21pm
I will give the condensed version here. I am sure I will forget something.
[As far as I know Karen wrote this message to herself in 2010, not sure why she did it then. I found it after her death.]
A minor car accident in October of 1989 started daily chronic neck pain and headaches. I did not have pain prior to that but I believe my underlying issue started when I was a teenager with scoliosis.
[Karen did not think she was injured at the time of the accident. It took many days for the concussion to come on. Not clear when the leaking issues may have started. She hit the left side of her head on the door jam and had a sideways whiplash, something that there is very little study on.
Things she heard with her ears did not stick to her brain very well. She compensated with her eyes. Things she saw, like reading, she remembered to never be forgotten. If it was important, I sent her messages so she would see them with her eyes over FidoNet (before the Internet), then over email on the Internet. This makes her vision problems described later more significant than it would seem.
The Traumatic Brain Injury (TBI) caused during Karen’s car accident caused obsessiveness, which she turned to advantage of obsessively studying anything that caught her interest. Mostly she studied medical texts, insurance, and dog obedience training.
1989 to 1994 we saw about 35 different doctors in the area of Pittsburgh, Cleveland, and Akron. Most said there was nothing wrong with her, a few to their credit said they had no idea what was wrong with her. After doctor 35 we gave up on doctors.
Due to Karen’s hearing issue she learned to make typed notes to take to doctors appointments. We also learned to take three copies: One for us to hang on to during the meeting with the doctor so we would not forget something. One to give to the nurse that would usually be seen before the doctor for the records. Lastly, one copy we put into the hands of the doctor directly. Karen discovered that some doctors never looked at the one given to the nurse!
We also went to a pain clinic in Pittsburgh for evaluation in this time frame. At the start of the appointment they insisted she write on their form in long hand everything she had neatly typed on the form she had gotten to prior to the appointment. This had her in tears. By the end of the day it became clear to us this place had no interest in Karen as a person, they were only interested in her insurance money! We never went back there. We found a pain clinic in Meadville that Karen stayed with for twenty-four years. She found there that cryogenic nerve freezes of the Occipital Nerve relieved some of the neck pain. Chemical/drug injections did nothing for this pain. Karen continues...]
… my husband was supportive and helpful, if it was not for him during this time … I would have killed myself over unrelieved pain. I exercised for a few sporadic years prior to 1999. 1999 is the year I started to faithfully do water exercise. It helps with depression but not enough. I have been on many antidepressants and they do not offer significant relief.
Systemic Tendinitis Starts
In 2003, I accidentally cut my left leg down to the bone just below my knee.
[A dish broke. Never throw broken glass into a garbage bag, put it in a box! The bag brushed her leg when she was taking it out. I have added her medical records for this event in the hopes they help someone: Karen’s medical records from 2003 when she was given Levaquin® and got ‘floxed.’]
I immediately went to the ER. After I finished the antibiotics I received at the ER, my leg became infected. My PCP gave me another prescription for antibiotics. The infection improved, but after I finished those antibiotics my leg felt infected but looked fine. My PCP gave me a lecture that I did not need more antibiotics as that would contribute resistance. A few days after this conversation with my PCP, my leg became an angry red, and was dead weight. The pain was HORRID! I went to the ER and was diagnosed with cellulitis. Several weeks of antibiotics cleared up the infection.
Six months after I thought the infection cleared, my left wrist started to hurt. My PCP diagnosed tendonitis, and prescribed physical therapy.
[Karen spent a year crawling around the house on this construction, skateboard-like thing so her ankles would heal.
Caused by the drugs above, see: Fluoroquinolones. Cipro® and Levaquin® should be taken off the market, and the FDA knows it! Levaquin® made it so she could not walk from the tendinitis.
I really believe that these antibiotics prevented future CSF treatments from working! So far there is no medical prof of that, just anecdotal evidence from several people that said their CSF Leaks started after taking a FQ based antibiotic.
Are the FQ antibiotics damaging the Dura? We need to find genetic markers in some of Karen’s preserved tissue. If you know of such genetic tests please contact me!]
Garth, Karen's Love.
All of this crap is the result of these #$@&%*! drugs!
During therapy my right wrist started to hurt, which was weird because the PT was not working on that wrist. Then the pain traveled up to both elbows, and shoulders then both knees start to hurt. At this point, I saw a rheumatologist. He diagnosed me with Rheumatoid Arthritis. This rheumy got the RA somewhat controlled. Three years ago, I developed tendonitis in both feet. My pain was a twenty on a scale of 1 to 10. I tried working with my Rheumy for about 18 months with this. He was a being a jerk so I switched rheumatologists last year. I have to drive almost two hours one way to the new Rheumy, but it’s worth it. The new rheumy changed some of my meds (not pain medication) and got this multi-year RA flare controlled which stopped a lot of the pain. The tendons in my feet are permanently damaged from being inflamed for that long. I can walk, just not very far. The new Rheumy diagnosed me with a variant of RA that attacks tendons [Caused by the drugs above]. My RA does not attack my joints.
[We cleaned up what we ate, drank, and got artificial chemicals like fluoride in toothpaste, chemical based soap, shampoos, cleaning products (amazing what white vinegar will clean) out of the house. We went with natural organics such as hemp-based soaps and cooking oils. The Rheumatoid Arthritis (RA) and Lupus symptoms went way over time and did not return. The issue really was multiple chemical sensitivities!
Overlook NOTHING in your environment nor the products you put in or on your body (hair coloring or getting a perm for example). Consider things like air fresheners. Good smelling stuff can be quite toxic just as the reverse might be true. There was nothing that could be done for the tendon damage caused by the drug!]
This past June [2010] a tendon in my left index finger spontaneously dislocated. My rheumy prescribed hand therapy and a splint. During hand therapy both knees became painful and inflamed. I developed the general overall sickish feeling I have during a flare. I saw my Rheumy again. I received three Kenalog injections. Kenalog stopped the underlying flare. Bilateral knee tendonitis established itself prior to the Kenalog injections. This is nearly healed now. If not for my new rheumy, that tendonitis would have become chronic and spread to additional areas. The old rheumy would not have done anything to help me because my blood work numbers were normal. Whereas, the new rheumy assured me that they treat patients as people, not as the numbers on your blood work.
… Those of you that had tendonitis know how bad that pain is, and that you MUST rest your tendons or they will not heal properly. Tendons take forever to heal because they do not have a good blood supply. I have to take care of all my daily activities and this takes me all day whether or not my tendons are inflamed.
[“… Commonly used FQs include levofloxacin (Levaquin®), ciprofloxacin (Cipro®), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin) and gemifloxacin (Factive).
… For many people, the concept of being “floxed” is difficult to comprehend. “The reaction is mostly disbelief,” says Girard. “They have been taking antibiotics their whole life and never had anything like that. Or they have taken Cipro® and they have arthritis or depression but don’t understand it could be from the Cipro®. But the reaction is mostly disbelief—until it happens to you.”
Fluoroquinolones, or more accurately their precursors, were developed as a chemotherapy drug. When it was discovered that the compound could actually kill bacteria, they were reformulated and marketed as antibiotics. However, they are far from penicillin.
Simply put, fluoroquinolones work by entering the bacteria’s DNA and preventing it from reproducing. However, they do not work only on bacterial DNA. They actually penetrate all the cells in the body. It’s believed that the tendons rupture because the FQs confuse the DNA, and the cells literally get mixed up.
“Tendons will be rebuilding wrong, and rebuilding wrong, until one day you overextend them and they snap. People get it in their shoulder, rotator cuff, hands, wrist,” ~ Mark Girard.]
I have no friends. I wish there was a local Chronic Pain support group were I could physically talk with others in Chronic Pain. I do water exercise at the Y, but I still feel very lonely and depressed.
Throughout the years, I have never been prescribed any pain meds stronger than Darvecet and Vicodin which do practically nothing for me.
[Having high power drugs would change later, however, the stronger ones only made her sick or have an even worse headache. Karen felt that narcotics lowered her CSF pressure, which you don’t want when your pressure is already too low! There may be no medical evidence to support this conjecture. Low CSF pressure causes pseudo Chiari, as shown in the drawing on the next page. Things are getting yanked on that were never meant to be yanked on! This is what causes the excruciating headache.]
Wednesday, December 22, 2010
I am no nurse, but several healthcare professionals that know me and are not treating me said that I more knowledgeable than the average person. Studying health-related subjects is my hobby.
http://smile.amazon.com/ch/47-1141080
Karen’s Journal ~ 2011
Friday, February 11, 2011
“As far as the MRI’s are concerned, I’m not aware of your particular situation, but I’ve been ‘preaching’ for years on this site that not all MRI’s are created equal. An MRI is only as good as the doctor that is performing the read. And an ‘open’ MRI does not provide the details of a traditional MRI and should be avoided unless a patient is TRULY claustrophobic.
“Let me explain. There are good radiologists and mediocre radiologists and there are radiologists that read a mammogram at 9:00 am and an MRI of your shoulder at 9:15 am and then an x-ray of the spine at 9:30 am, etc.
“And THEN there are radiologists that SPECIALIZE in reading MRI’s, and THEN it gets one step better. There are radiologists that specialize in musculoskeletal MRI. All they read are MRI’s of the musculoskeletal system. THESE are the radiologists that you want to read the MRI’s of your shoulder, knee, ankle, foot, etc. (There are even musculoskeletal radiologists that specialize in particular body parts such as the foot/ankle!)
“These radiologists are so specially trained, that they are up to date on the anatomy, physiology and pathology of the particular areas and rarely miss a problem compared to ‘general’ radiologists.
“Most major teaching hospitals/university hospitals have musculo-skeletal radiologists on staff. Therefore, there MAY be the possibility that your injury/pathology DOES/DID exist on your MRI, but simply wasn’t picked up by the person that was reading the films.” ~Dr. DSW http://heelspurs.com message board.
Random Chronic Pain Thoughts
Wednesday, March 2, 2011 at 10:36am
I am the author of the following:
Regardless of the cause of Chronic Pain, certain themes emerge. Chronic Pain affects the physical, mental, emotional, and spiritual aspects of ones life. Chronic unrelieved pain causes impaired activities of daily living, changes in mood, decreased involvement in social activities, impairs function, leads to depression, anxiety, causes feelings of hopelessness and despair, and can result in suicidal behavior.
You learn who are your true friends. Many people are supportive in the beginning. As time goes on, most of those people reject you. Only true friends last.
Chronic unrelieved pain steals your future, your ability to hold a job, and your health insurance (if tied to your job.)
People that have not experienced severe unrelenting pain for months or years expect you to suck it up and continue your normal daily activities.
Chronic Pain makes you feel alone. Like no one understands how much pain you are in.
[Sadly prophetic about suicide. –Hubby]
Wednesday, March 2, 2011 at 9:44pm EST
If you would not mind, can you tell me how you were diagnosed with lupus?
What symptoms did you have when diagnosed? How long from your first symptom until diagnosis?
What symptoms do you currently have? And how you manage the symptoms? Sorry for these questions.
After a major antibiotic resistant infection in 2003, I developed flares where my body systemically attacks my tendons. One of the medications I WAS on for my diagnosis of Rheumatoid Arthritis is Remicade.
In hind site. one of the known side effects is elevated dsDNA. Well, I began getting weird symptoms on the medication, and the local rheumatologist increased the medication with no blood test. I continued to get worse.
About a year after this, I switched rheumatologists and had my dsDNA checked. Elevated, along with some other values consistent for lupus. I have been off Remicade for three years now.
My values have came back into the normal range, and so far have stayed there... I have no more weird symptoms.
My tendons still become regularly inflamed. This inflammation was the reason for starting Remicade in the first place. I have neck and back pain from a congenital reason unrelated to the rest of this post for most of my life.
Sunday, March 6, 2011
malinerging, attention seeking, insinuations that it’s purely psycological
The problem with pain is that you’re the only one who can feel it and people are prone to thinking you exaggerate disbelief, allegations of malingering or pathetic weakness, blame for bringing illness on themselves, insinuations that the illness is purely psychological or just imagined, claims of attention-seeking, or any number of harsh judgments rising from ignorance or lack of compassion.
Thursday, March 10, 2011 at 5:04pm EST
From reading your wall, you are a very positive person. How do you stay so positive in your situation? I struggle with staying positive.
Tuesday, March 22, 2011
If you learn from your suffering, and really come to understand the lesson you were taught, you might be able to help someone else who’s now in the phase you may have just completed. Maybe that’s what it’s all about after all.
Saturday, March 26, 2011
It amazes me how many people will get their information and opinions off of talk radio, instead of researching things on their own and thinking on their own....do they not realize that talk radio is just entertainment...
Lung Issues Start
Wednesday, April 6, 2011 at 9:59am EDT
I had the flu in February with much dry coughing. It appeared to be getting better than got worse mid-last month. I went to the doctor and was given an anti-biotic. My head cleared up and the cough lessened. The cough is increasing in frequency again. My chest was clear at the rheumatologist yesterday. He gave me an injection of Kenalog thinking maybe there is some inflammation in my head causing the cough. If I cannot get this dry cough that is resistant to cough medicine to go away, I will need to have my lungs checked. My Mom has advanced pulmonary fibrosis (scarring of the lungs) which ultimately causes death. One of the early symptoms of a dry cough resistant to cough medicine.
Tuesday, April 12, 2011
Life just handed me lemonade. Not sure what to do.
Business truth: The phone will not ring until you leave your desk and walk to the other end of the building.
If people talk behind your back, it’s because you are ahead of them.
As I said before, I never repeat myself.
The Only Constant In Life Is Change
In order to succeed, you must first be willing to fail.
Most people walk in and out of your life. But only true friends leave footprints in your heart.
I’ve decided not to be pessimistic. It wouldn’t work anyway.
If Facebook ever shut down, you’d see people aimlessly walking round streets, scribbling on walls, and poking each other.
If you are non part of the solution, you are part of the problem.
Laugh at yourself first, before anyone else can.~ Elsa Maxwell
Speak when you’re angry and you’ll make the best speech you’ll ever regret.
Assumption: the first sign of impending disaster.
Starting a sentence with “If you ask me” almost always indicates that no one asked you.
Just because your doctor has a name for your condition doesn’t mean he knows what it is.
Always listen to your wife, she gives sound advice : 99% Sound and 1% Advice…
I keep trying to lose weight... but it keeps finding me!
Medicine is full of probabilities and uncertainties.
Being the youngest child is the biggest compliment ever! Think about it...your parents decided they finally got it right and didn’t need to try again! LMAO!
Did ya ever notice that LIVE backwards is EVIL?!! and LIVED is Devil.
To get respect, you need to give respect.
Remember, It’s not how much you have to enjoy... It’s how much you enjoy what you have.
I have the greatest mom and dad in the world! I LOVE MY MOM AND DAD!!!
I can type upside down and backwards. I ɔɐu ʇʎdǝ ndsıpǝ poʍu ɐup qɐɔʞʍɐɹps.
[I remember her being so excited when she showed me that she learned how to do that.]
Nick Goes to Rainbow Bridge
[The website contains links to YouTube videos of Nick. The picture at the right is from 2001, pre-Floxing, Karen’s teaching Nick ‘Watch Me.’ Karen’s most loved hobby was obedience training our dogs.
Nick had hip dysplasia, so Karen got him a treadmill to keep him exercised (we did not get one when I wanted one years earlier, go figure). At times, Nick would ask to get on the treadmill. We thought we’d burn off some of his high energy levels. We discovered we were building up his endurance!]
Wednesday, May 18, 2011 at 3:42am EDT
With the vets help, Nick [our Australian Shepherd we raised from a puppy. He was a very strong dog, required a strong leash, this becomes significant at the end] passed away last night. He had a really bad day yesterday. I cried all night last night and yesterday. The next step was subcutaneous fluids, which with his temperament, age and arthritis, was not a viable option. He had kidney disease.
Thursday, May 19, 2011 at 10:41am EDT
Thank you for your support. Right now, all I can think of is what he looked like. We kept his weight around 40-45 pounds. Although I do not know his weight on Tuesday, it was less, much less. He lost a lot of weight toward the end. His shiny, smooth, pretty merle coat turned unkempt. It didn’t matter whether I bathed or furminated him. He was very subdued at the car and vets office, and not his normal, happy, excited self. We stayed home on Tuesday. We spent all day doing activities with him that he enjoyed when he did not need a rest. On Tuesday, Bob was supposed to be in Cleveland for a seminar, and I had plans. It was more important that he did not spend his last day at home alone. Garth spent most of the evening last night looking for his buddy... How do I tell another dog that his friend will not be back? My spirit died with him.
[How do I tell Garth ‘Mommy’ will not be back? Ten months later he is still looking for her.
Karen I’ll meet you, Diamond and Nick and probably Garth by then, on the other side of Rainbow Bridge… Right now wishing it was soon, yet there are things that need done to help those you’ve left behind...
See page 240 for the Rainbow Bridge poem.]
Can’t Walk Due to Tendinitis
Saturday, June 11, 2011 at 9:54pm EDT
I developed another tendonitis in my ankle, so I will be dealing with this most of the summer. I get tendonitis in multiple sites.
[She spent a year crawling around the house on a skate-board-like thing so she would keep the weight off her tendons so they would heal. This Levaquin® crap ruined Karen’s future. I believe it keeps future CSF Leak treatments from working.]
Friday, June 17, 2011 at 9:09am EDT
I wish there was a machine they could hook us up to, that showed the amount of pain we have. Then maybe pain would be adequately treated!!!!!!
[Why can’t we figure out how to do this? For example there is no objective test that will show that you are hungry.]
Sunday, July 17, 2011
I was dumb with shock when Nathan shot Shawna.
[The brother shot and killed his younger sister across the road from us. That is a story in itself.]
It was dumb luck that I won the door prize.
It was dumb luck that I had that accident.
1. What do your eyes “hear” that tells you someone is not listening?
[A dead web site link was here. Link to reading body language?]
Noticing what their eyes are focused on;
What they are doing with their hands;
Their posture.
The eyes and facial expression of a listener are important to a speaker. If a listener is rolling her eyes, has a bored expression or seems glazed over, these are blatant cues that the listener is not actually listening or does not care about the speaker has to say
2. To let you know they have a problem
Comes to you with a look of concern on their face.
A normally friendly person has a behavior change around you.
3.http://smallbusiness.chron.com/noverbal-communication-examples-workplace-10663.html they may give off subtle cues in their body positioning by turning slightly away, giving the impression that they want to leave the conversation
4. Fidgeting while listening also imparts cues that you are not interested in what is going on. This includes fiddling with your hands or doodling, as well as swinging your foot and crossing and recrossing your legs.
5. They appear angry. Prompts an emotional response.
6. Staring off into space
Thursday, November 24, 2011 at 8:29pm EST
My ankles had flared a bit again last week. They seem to be calming down again. I am considering getting a scooter and lift for my van. My physical therapist thinks this is a good idea for my condition. Do you have a scooter? If you did, maybe next year we could go for a *walk* on the bike trail together.
Thursday, December 29, 2011 at 6:36pm EST
You will mourn your dog for a very long time. He was a member of your family that was suddenly taken from you. Eight years ago this past November, Diamond [our first Australian Shepherd] passed away. I still cry if I think of her much. Nick past away this past spring. I have been feeling very depressed lately. Going out and about among people makes me feel better. I need to do that more often, but I do not know where to go or what to do because of my physical limitations. I get to the Y 2-3 times a week, get groceries, go to my doctors appointments, and a few other places on a regular basis. The long hours of being alone at home are what depress me. How do you deal with not being able to get out often?
Karen’s Journal ~ 2012
Friday, January 20, 2012 at 6:53am EST
I have not been home consistently for a phone call because of various medical appointments. I am starting to see a speech therapist next week for this throat issue that I have been having since the flu last February.
Sunday, February 19, 2012 at 10:08pm EST
I felt myself beginning a flare of multiple site tendonitis again. I went to the doctor, he was going to prescribe more PT. I told him that I had 8 scripts since June 2010, and many more before that. I still do those exercises most days. He gave me a prescription for a muscle relaxer, Baclofen which as stopped the flare. I do not feel like I am developing tendonitis all because of that medication. My neck pain and headache, which are a different kind of pain are still there. Baclofen did not change that.
Sunday, February 19, 2012 at 10:12pm EST
[Hand held] Ultrasound does help. Relaxing the muscles helps, too. I have had tendonitis so much that I know what it feels like in the very early stage which is when I quickly got to the doctor and he gave me the muscle relaxer.
Friday, April 6, 2012
Pittsburgh Chiari
http://www.ncbi.nlm.nih.gov/pubmed/16359556
http://mychiaribooboo.blogspot.com/2008/06/june-25-2008-12-days-post-op.html
How Do MRI’s Detect Problems
http://www.scientificamerican.com/articlecfm?id=how-do-mris-detect-medica
Neck Exercises—Improving the Cervical Curve
http://www.youtube.com/watch?v=zpk1HOWTZ8s
Thursday, April 19, 2012 at 6:49am EDT
I do not think that I will go to the Y today because I have irritated my foot from walking in the yard too much.
Wednesday, May 16, 2012 at 12:16pm EDT
I will not be at the Y tomorrow. I am going to go to the doctor for my chronic headache.
[Karen had discovered the “Highfield Open MRI” south of Pittsburgh could do a ‘standing MRI,’ the position that she always had the most pain in. Why do tests in positions that do not have the symptoms? That makes no sense. She convinced one of the local doctors, not sure which one, to order the test. They did not think she needed it, but knew she would get it done one way or the other so they ordered the test.]
Thursday, May 17, 2012 at 6:58pm EDT
I am doing so so. I am off my RA meds, including prednisone, but I still take several other medications. Right now my ankles, especially my left one is hurting a lot. I think it would hurt just as much if I was on prednisone. I do not think prednisone makes a difference for me. Yes, I am going to the Y.
Thursday, May 17, 2012 at 7:03pm EDT
My depression is from the pain I feel, too. I think sometimes, that if we do not fit the typical symptoms that doctors learned about in medical school, that they blame our problems on us. Like they think it is all our fault.
Thursday, May 17, 2012 at 7:06pm EDT
Yes, I think he is. Dr. Makarowski is real nice about it. I just think some of the other doctors that I see blame me for my pain. My pain is real, no one would put themself through 23 years of the crap that I have lived with if they could help it.
Thursday, May 17, 2012 at 7:14pm EDT
The isolation from not being able to go away increases depression. I have personal experience with that! Like the saying I shared on my FB page today, “You Will Never Truly Understand Something Until It Actually Happens To You.” I decided to hold of on getting an electric scooter. I may do it sometime, I do not want to do it right now.
Thursday, May 17, 2012 at 7:25pm EDT
I understand your prednisone predicament. I stopped taking it two weeks ago this past Tuesday, and have lost 6 pounds so far.
After 22 years I know what is causing my headache!
Wednesday, May 23, 2012 at 4:19pm EDT
Sorry about today when you called. I was leaving the house. As for my chronic headaches, the MRI of my brain is normal.
[At this point in studying MRI she came across something called Chiari Malformation and found a neurosurgeon in Erie that dealt with it.
Tip: When you go to the doctor always ask about where to park!
She again fought for a referral and got it. Based on the standing MRI he said she did not meet the 5mm Chiari level to have that. This doctor said her symptoms sounded like a CSF Leak and recommend that we contact a doctor Schievink in LA. To my knowledge this was the first she had ever heard of a CSF Leak but I am not sure, anyone know? She started to obsessively study anything she could get her hands on about leaks. She was *excited* that she found something that, after 22 years, matched her symptoms!
She wrote off the idea of seeing Dr. Schievink as she did not think she could handle the long travel. She found Dr. Gray was within a ten-hour drive. This is what she wrote, as she again fights for a referral, still excited at long last finding what was causing her problem.]
I Found Dr. Gray
Monday, May 28, 2012
> Dear Ms Paddock
> It would be useful if you could send me any medical records or scans.
> With so little information it is difficult to make any
> recommendations. If you have never had a brain MRI performed then
> I would first have that test done.
I had a recent upright cervical MRI, and brain MRI with and w/o contrast. No other tests have been done. The scans are here to download and view, these are a copy of the CD’s...
Brain w and w/o contrast MRI report:
FINDINGS:
Scattered subtle subcortical withe matter hyperintensities are noted on the T2 and FLAIR sequences that are not increased signal on diffusion weighted images and do not enhanced with contrast portion of the exam. There is no intracranial hemorrhage, mass lesions or midline shift. There is no evidence of acute infarction.
IMPRESSION:
No acute intracranial pathology.
My comments on the brain MRI:
The brain MRI was taken in the supine position. After the iron-based contrast was injected, the technologist immediately, without waiting for the contrast to circulate, took pictures for only 6-8 minutes. This has me questioning if the contrast had time to go everywhere. I am no radiologist so I may be wrong, but I thought 4 or 5 of the T1/COR/POST pictures may have showed enhanced meninges over the cerebellum.
Cervical MRI report:
FINDINGS:
Examination shows mild reversal of normal lordotic curve. All the cervical vertebral bodies are of normal stature and contour with normal signal intensity. There is desiccation of discs at C5-6 leval associated with small central and left paracentral bulging or protrusion of disc slightly indenting on the thecal sac at this level. The upper cervical discs show normal signal intensity. The C1-C2 relationship is intact and shows normal signal intensity. The cervical cord is not enlarged and shows normal signal intensity. There is no spinal stenosis. The paraspinal soft tissues show normal signal intensity.
IMPRESSION:
1. Mild reversal of cervical curve. (See my note just below this IMPRESSION about this finding.)
2. There is desiccation of discs at C5-6 level associated with small central and left paracentral bulging or protrusion of disc, slightly indenting on the thecal sac noted.
My comments on the cervical MRI:
The upright cervical MRI was without contrast and taken at a 30 degree angle. I had a pillow behind my head, and not my neck. This could have caused the reversal of my normally nearly straight cervical curve. I do not have arm pains or weakness, so I do not think the desiccated disc is causing pain.
HISTORY:
I am 42 years old.
In 1989 I had a car accident. I hit the left side of my head on the driver door jamb. I had a lateral whiplash with no broken bones. I had a concussion, and no other injuries.
One month after the accident I began gradually develop a headache that went completely away withing minutes of lying down, and the headache came back within minutes of being up. Twenty three years later, I still have a daily severe orthostatic headache. The position I lie in does not matter, back, either side, or face down, my headache goes away within a few minutes, and returns within a few minutes of being upright again.
From 1989 to 1994, I had numerous, MRI’s CT scans, and x-rays. None showed the problem. I have most of those films.
In 1994, I had nerve root decompression of C2 on the right, thinking maybe that was the cause of these headaches. That surgery was unsuccessful. [Alas, the doctor claimed it was successful.] After this surgery, I stopped seeking further care for my severe debilitating orthostatic headache, until I came across your work a few months ago on incracranial hypotension. This renewed my determination to find cause and treat these headaches. This would greatly improve my quality of life. My headaches do not have an official diagnosis.
It is suspected that I have an undiagnosed connective tissue disorder.
[I will make any tests or CDs I have available to anyone that thinks they can use the information to help solve the problems of CSF Leaks or any other invisible/rare condition.]
Monday, June 11, 2012
Dr. [Local PCP],
I am here today because every summer I have a flare up of tendon pain that can appear anywhere. Right now my left ankle and right elbow are flaring up.
A few years ago, I had what was thought to be drug-induced lupus from Remicade. My Anti-Nuclear antibodies and dsDNA were increased, along with blood in my urine. This resolved when I stopped Remicade.
Since I have a history of drug-induced lupus, and my tendon pain increases in the summer when I am exposed to more sunlight, is it a good idea to check my Anti-Nuclear antibodies and dsDNA?
I am no longer on Rheumatoid Arthritis medications.
Every three months, I have a CBC/W DIFF & PLT, Comp Metabolic Panel W/eGFR, and C-Reactive Protein. My last tests were in April. The results were okay. I brought the test results with me. I will have this blood work again next month.
In regards to the brain MRI that I had a few weeks ago, the results were normal. This tests only shows the effects of a cerebral spinal fluid leak about 78-80 percent of the time. I am still checking my options of traveling to see an expert on this problem.
Sunday, June 29, 2012
http://www.painphysicianjournal.com/2008/january/2008;11;77-80.pdf
[“Epidural Blood Patch for Chronic Daily Headache with Postural Component: A Case Report and the Review of Published Cases”]
July 2, 2012
This note something for [local doctor] to read prior to sending the referral.
A little background on Dr. Linda Gray-Leithe, the doctor at Duke that I am interested in visiting:
She is a Neuroradiologist/Interventional Radiologist.
Her clinical interests are: Spinal imaging, MR of spine trauma, cerebrovascular disease, dementias, spinal interventions, CTA. This information is at http://www.dukehealth.org/physicians/linda_g_leithe
What is not on the web page is that she has a special interest in chronic postural headaches with potential CSF leaks.
Sixty-six [now 75+] publications where she was the author or co-author are listed here: [Service has been sold, URL no longer works.]
I would like it if my postural or orthostatic headache is the primary reason for my referral, (although she may be able to help with the other issues.) I want a new point of view on a chronic problem by someone that sees issues similar to mine more than the average physician does.
My headache is my primary motivation because twice a week massages by [local massage person] M.S. P.E.S. reduce my pain everywhere, including neck pain, but my postural, or orthostatic headache is unresponsive. If my headaches were purely muscular skeletal, her massages would reduce the pain temporarily. Massage does not. Muscle relaxers do not help.
Sunday, July 29, 2012
> On Sunday July 15th 2012 Linda Leithe, M.D. wrote:
>
> I will look for those CDs as soon as I get back to the hospital. I
> have been gone this past week and will be at a meeting this next
> week! I look forward to talking to you and seeing you! I took care
> of a patient who had had headaches since she was 5 yo and I saw
> her at 72 and got her better... so don’t despair and let’s see what we
> might be able to do!
Your life sounds hectic.
Let me know when you find the CD’s.
If you do not have time to find them, my husband fixed the problem with the same CD’s on the website...
I do not want to keep this problem until I’m 72, so I hope I can see you sooner than that.
Actually I hope we can get together before the weather turns bad this winter.
Looking forward to meeting you in person. Let me know what other information you might need from me, please.
Wednesday, August 15, 2012 at 9:40am EDT
I will call you in the morning to let you know how I am feeling, and if I have enough energy to go to Fryburg. My husband brought a cold home from work last week and gave it to me over the weekend. Nice of him, wasn’t it? Monday and Tuesday I ran a fever and had no energy. I want to go, but I do not want to give this crap to you or [other person] either. I have an appointment on September 10th at Duke University in North Carolina for this positional headache that I have had for years. I have a severe headache when I am upright that goes away when I lie down. I will probably be in NC most of that week.
Tuesday, August 28, 2012 at 5:34pm EDT
I am going to North Carolina for my chronic headache that I have when I am upright that goes away within minutes of lying down, only to come back when I am up. I am going down there because that is the closest doctor that I can find who BELIEVES the patient, and will do testing, and possibly treat the problem. I will not have any vacation when there, as I won’t be allowed to do much of anything. I do not know anybody down there anyways.
Wednesday, August 29, 2012 at 5:58pm EDT
My husband had a tooth pulled today, and I had to go with him to drive home. He is such a baby at the dentist and has to have sedation, not only Novocaine.
[I was hurt bad at a young age by a dentist. Karen would have root canal done with no sedation due to her high tolerance for pain. This becomes significant later.]
I am seeing Dr. Linda Gray-Liethe at Duke University Medical Center. I hope and pray that my Mom and her health conditions do not force me to delay the trip at the last minute. Coordinating the trip with Bob’s work, hotel, kennel for the dog, and other reasons that we have to be in PA on certain dates make the trip very difficult to reschedule.
First Meeting with Dr. Gray
Tuesday, September 11, 2012 at 9:05am EDT
I am in North Carolina. Dr. Gray found seven spinal fluid leaks with the CT myelogram. The headache I was having was a low pressure headache. before I left the hospiital to come back to the hotel, the frount of my eyes and forehead began hurting, both are not my usual normal. She called that a rebound high pressure headache and prescribed a duretic. I took on the duretic when I got back to the hotel about 3 pm. I did not take any before bed. Sometime during the night I started to have low pressure spinal headache again. I called the doctor this morning, and she said to stop taking the diuretic, and she will call later today.
Friday, September 14, 2012 at 1:06pm EDT
I have bad news. I will be here longer than expected. A headache very familiar, if not the same one I had came back yesterday. Dr. Gray gave me an epidural yesterday, and would like me to meet with another doctor on Tuesday morning.
Tuesday, September 18, 2012 at 10:24pm EDT
Thank you for your prayers! I saw the other doctor this morning, he is a surgeon. He did not think that my headache was coming from my neck. He thinks that my headache is coming from cerebral spinal fluid issues. I am going back to North Carolina in a month, or two. I do not have the appointment yet.
[On the records of this Duke surgeon there were many tests listed. They were not done. ALWAYS get a copy of your records!]
Thursday, October 4, 2012
How many of you lost friends or have family members that do not believe that you are as sick as you are? I have been fighting this battle for 23 years now. I have very few friends, and most of my family does not believe me.
Saturday, October 13, 2012 at 1:21pm EDT
I just posted one of those picture sayings on my wall that said “So I’m only imagining my pain because you don’t know anyone with my illness? Wow, I didn’t realize that you were so influential.” So fitting, isn’t it?
Sunday, October 14, 2012 at 1:03pm EDT
I should be at the Y this week. I go back to North Carolina next week. My appointment there is on the 23rd. I expect to get more patches for the Cerebral Spinal fluid leaks. I will probably be there about a week.
Things will be difficult for a while after I get back home.
I think my post patch restrictions this time will be no stretching, lifting, and bending. So that makes running the vacuum cleaner, laundry, getting groceries, loading and unloading the dishwasher, getting things out of the refrigerator that are not on the top shelf, picking up dog poop and a few other things difficult, if not impossible to do. I have one of those reachers that would ordinarily help with picking things up off the floor BUT several of my leaks are between my shoulder blades which contraindicate using it.
Sunday, October 14, 2012 at 7:36pm EDT
I have a very difficult time sitting still, so it will be a challenge to not do those things. My husband helps what he can, but being gone 11 hours every weekday for work limits what he can do to help out at home.
Monday, October 15, 2012 at 12:58pm EDT
I see them [her family] on holidays, but that is it. I would love to have a close family, but that is only a dream.
Saturday, October 20, 2012 at 1:52pm EDT
It is hard with problems like this. With this horrible headache, I did not have the opportunity to make long-term friendships when I was younger.
All the local doctors think that with this headache, that I was crazy. She found the problem in North Carolina. Recovery will not be a quick fix. I have had the horrible headache everyday when I am upright for 23 years.
Second Trip to See Dr. Gray
Monday, October 22, 2012 at 8:34pm EDT
We made it here safely [to Durham] yesterday.
Wednesday, October 24, 2012 at 9:49am EDT
Being a dog parent myself, I understand how important they are! They are another member of your family. My dog is more important than most humans to me. In fact, I would have been upset had you delayed taking your dog to the vet so you could come see me! I hope that your dog is feeling better!
My back hurts quite a bit today. I expected that. Dr. Gray did 8 patches of 3cc each in my low back. She thought that my bilateral par defect/fracture at L5 may be causing a leak. Last month, she did 7 patches in my upper back and thoracic areas. Last month, my low pressure headache came back within a couple days. Last month my pressure was 14 and 1/2. Yesterday, it was 15 and 1/2. Currently, I do not have a headache, high or low pressure. I think that I will take the advice on the FB group of no bending, twisting, and lifting. We want to go home this weekend, but that depends on how I do and the hurricane [Sandy].
Wednesday, October 24, 2012 at 9:59am EDT
Sorry, I forgot to tell you that I had an appointment here in North Carolina yesterday. My back hurts quite a bit today. I expected that. Yesterday, Dr. Gray did 8 blood patches of 3cc each in my low back. She is trying to patch the holes where I am leaking cerebral spinal fluid. Last month, my low pressure headache came back within a couple days. Currently, I do not have a headache but last month I did not either for a couple days post patching. If you do not mind, you can keep the folks at the Y updated about me.
Wednesday, October 24, 2012 at 10:04am EDT
My back hurts quite a bit today. I expected that. Yesterday, Dr. Gray did 8 blood patches of 3cc each in my low back. She is trying to patch the holes where I am leaking cerebral spinal fluid. Last month, my low pressure headache came back within a couple days. She did the blood patches in my upper and mid back last month. Currently, I do not have a headache but last month I did not either for a couple days post patching.
Wednesday, October 24, 2012 at 12:04pm EDT
Pain free is not likely. I have multiple issues causing pain. I either a birth defect or old break at L5 (the lowest vertebra in you spine) that causes instability and I have issues with my sacroiliac joints.
[This is the issue from when she was four.]
Thursday, October 25, 2012 at 4:27pm EDT
I have problems with high CSF pressure right now. It’s an expected complication which may last months up to a year. I have to manage the high pressure with medication, lowering my activity, and diet modification. It will be hard when I get home with no bending, twisting or lifting. My husband does what he can, but he is gone 11 hours a day every weekday.
Friday, October 26, 2012 at 1:54pm EDT
I plan to come home tomorrow. Things are going to be rough for quite sometime as I have rebound intracranial hypertension. This will last several months to upwards of a year. This was expected to occur, and is a good thing as long as I properly manage it. Intracranial hypertension is managed with medication, lowering my activity level, and eating less salt. For as long as I am battling intracranial hypertension, things like going grocery shopping, picking up dog poop, running the vacuum cleaner, and doing laundry will be impossible. Even minor bending causes all the pressure to go to my head and affects my vision and makes me dizzy. I have to keep my intracranial pressure from spiking or it will blow out the patches. If I blow the patches I will go back to intracranial hypotension.
Rebound Intracranial Hypertension Starts
Friday, October 26, 2012 at 6:48pm EDT
Thanks… I appreciate your support. We will probably come home tomorrow. Things are going to be rough for quite sometime with rebound intracranial hypertension. This will last several months to upwards of a year.
This was expected to occur. That is managed with medication, lowering my activity level, and eating less salt. For as long as I am battling intracranial hypertension, things like going grocery shopping, picking up dog poop, running the vacuum cleaner, and doing laundry will be impossible.
Even minor bending causes all the pressure to go to my head and affects my vision and makes me dizzy. I have to keep my intracranial pressure from spiking or it will blow out the patches.
If I blow the patches I will go back to intracranial hypotension. Things will be rough because Bob is gone 11 hours per day every weekday and spends a night or two a week with his Mom. Scroll down to signs and symptoms to see what is happening with me now:
http://en.wikipedia.org/wiki/Intracranial_hypertension
Saturday, October 27, 2012 at 8:48pm EDT
So far, I am in rebound intracranial hypertension (too high of cerebral spinal pressure) which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high and blow out my freshly sealed patches, which would put me back in low pressure. I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest. I will always have pain on some level somewhere in my body because of the way the bones in my pelvis are abnormally rotated [Issue from when she was four], putting abnormal stresses throughout my body.
Sunday, October 28, 2012 at 11:22am EDT
For my low pressure is in my occipital area, that’s below my ears in the back part of my head. The HP is mainly in my eyes, forehead, and a little behind my ears.
I will definitely try to take it easy for a while. It’s hard because I also have back problems that feel better with movement, and mentally I feel better with movement.
Overall, the headache has been worse than these other pains. I have had this headache for 23 years. I had a car accident when I was 20 years old.
Monday, October 29, 2012 at 11:50am EDT
So far, I am in rebound intracranial hypertension (too high of cerebral spinal pressure) which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high and blow out my freshly sealed patches, which would put me back in low pressure.
I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest.
I will always have pain on some level somewhere in my body because of the way the bones in my pelvis are abnormally rotated, putting abnormal stresses throughout my body.
Struggling with Depression
Wednesday, October 31, 2012 at 7:11pm EDT
How do you manage to keep from getting depressed with the need to lie down a lot? Depression has been a struggle for me since this started 23 years ago. I did not find the psychologist that I saw off and on helpful.
Thursday, November 1, 2012 at 1:03pm EDT
I do not feel very good from rebound cerebral spinal fluid pressure being too high. I am doing what I can to lower it with medication, and lowering my activity level.
I know when I begin to raise my activity level in a few weeks my pressure will go even higher, which will slow me down.
Wednesday, November 7, 2012 at 7:39pm EST
You may have noticed that I have not been at the Y for the past few weeks. I had another appointment at Duke University in North Carolina for more dura patching, since the patches in September did not hold. I had several undiagnosed spinal fluid leaks for 23 years!
I was just diagnosed this past September. I had to go to North Carolina that diagnosis and treatment. Think spinal headache. Yes the headache was that bad!
It went away when I lied down only to come back when upright. No treatment worked massage, PT, medications and so on for that headache. So far, these patches are holding.
Way to early to celebrate because I currently have rebound intracranial hypERtension which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high, and blow out my freshly sealed patches, which would put me back in low pressure. I have a high risk of that happening.
To lower my CSF pressure I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest. When a person has long-term dura leaks, the brain compensates by making more CSF. Plug the holes, the brain still makes too much putting me in intracranial hypERtension. High CSF pressure makes eyes get funny.
I have not blacked out from the pressure since starting Diamox. High pressure makes me very cold. Wearing my winter coat in the house and being under a thick comforter does not warm me. Too high pressure makes me unable to walk in a straight line, and I am not dizzy. Taking enough, but not too much Diamox, warms me and lets me walk in a straight line.
These things will get better over time as my brain re-learns to regulate CSF pressure.
Tuesday, November 13, 2012 at 9:42pm EST
Thanks for your prayers… I have a long road ahead of me. Who knows how much permanent injury my brain suffered from not being cushioned in enough fluid for years.
Tuesday, November 13, 2012 at 9:45pm EST
I saw your message about going to the chiropractor. I do not know if you are a head or spine CSF leaker. I know that Dr. Gray does not like spine leakers seeing a chiropractor. I saw Dr. Gray a few weeks ago and asked her that question.
Wednesday, November 21, 2012 at 7:28pm EST
I do not like it when people drop in on me without a call at least a couple hours beforehand (unless it is an emergency) so I would give you the same respect. I never know what someone else may have planned. I do not want to interrupt their plans so I always try to call first. I do not get offended if they tell me they have other plans. I have needed to tell others that.
Tuesday, November 27, 2012 at 2:28pm EST
I suffered insomnia the last couple nights. High pressure keeps me awake.
Living with an Epidural-like Headache for 23 Years No Opportunity to Make Deep Friendships
Tuesday, November 27, 2012 at 9:13pm EST
The doctor from North Carolina called me in a diuretic. I took the first dose at 2:30. I will take more before I go to bed. I am only on the computer right now because I spent the last few hours not moving. Maybe that will allow me to see the screen for 15 minutes before my eyes go funny from too much spinal fluid pressure… I have the spinal or CSF leaking headache for 23 years… The psychologist that I was forced to see (by one of my doctors) off an on over the years for my *psychogenic* headache also reinforced… Have you ever had an epidural and had a spinal headache? If you have, you know how bad those headaches are!!! Now imagine living with that for 23 YEARS. Because I had this issue for 23 years, I did not have many opportunities to make long lasting deeper friendships. I did not talk about my massive headache when I went out, I was unable to go out a lot.
Duke ER
Sunday, December 2, 2012
[Karen now has all the symptoms of a major concussion from High Pressure, without hitting her head. She did not understand the pressure had been building since her patching in October.
Karen contacted Dr. Gray whom told us to get there as soon as we could. We left with little preparation or packing.
On the drive down, Karen continued to get worse. Karen talk-ed with Dr. Gray on the cell phone and told her to go right to the ER at Duke. We were still at least four hours away. Karen wrote this note as we drove down the interstate so she would remember what to tell Dr. Gray when we got there:]
[We had never been to ER at Duke before, and I only had a vague idea of where it was, and we did not have it programmed in the GPS, as we were not planning on driving from the Pittsburgh area to Duke ER, a ten-hour drive.
Whoever designed the physical layout of Duke had no clue what they were doing. There is zero parking at the ER entrance. Karen went in ahead of me and told me to bring in the medication for them to see what she was taking.
Always have an up-to-date list of medication with you at all times.
Karen was an amazing person, however, organization was not something she was good at. Her medications were in several plastic bags from a big box store. Only she knew which was the correct bag—the single bag that she wanted me to bring in.
For reasons known only to her, she had several open bottles of the same medications, some of them being narcotics (I later turned all of this over to the state police). She told me once she would not combine the bottles as that made the count wrong and we would get in trouble if ever questioned.
So I enter ER with at least six bags full of pill bottles of various types.
Karen is NOT happy about this, and when the doctors see this cache of meds they immediately label her as a drug seeker and did not take her seriously, even though Dr Gray had called ahead and told them Karen was coming and what to expect. This is the common treatment many CSF Leakers get when they go to the ER, always as a last resort because they know this happens.
This makes no sense at all to me. We had a lot of heavy duty drugs in hand, we probably had more than they did in the ER! So please explain the logic of why would Karen need to get drugs from them? She rarely took most of this stuff as it made her sick or her headache worse.
Karen had not slept in days. They told me to pick up some Benadryl at a pharmacy and sent us on our way. This was a complete waste of our time, and it gets worse.]
Benadryl
[I got Karen to the hotel and went across the street to get the Benadryl. They did not have the name brand and gave me some generic stuff that they said was the same thing. STICK TO THE NAME BRAND!]
I’m Blind
[We finally got to bed late at night, far later than normal, and I don’t recall the time. At some point, I hear a noise and it wakes me up. It is still very dark.
I find the source of the noise to be Karen standing between the wall and nightstand in the corner where no reasonable person would be at for any reason.
What are you doing there?
“I can’t find the bed. Turn on the light.”
I turn on the light.
“Why don’t you turn on the light?”
I panic. Thinking this can’t get worse—her suicide proves that wrong—thinking how will she cope now that she is blind? I thought it was already permanent.
She can’t remember anything that she hears due to the Traumatic Brain Injury, now what will she do if she can’t see?
In my own panic, I don’t remember the exact sequence of events. I get Karen into bed and she goes to sleep. She does not understand that she is blind. She is very calm about all this, unlike me, she just thinks it is dark in the room or the light is burned out, she is too out of it to understand.
Somehow, I get a hold of Dr Gray who gets an appointment with an Duke eye specialist, which is a day or two away. The diagnosis is irritated optic nerve due to the high pressure. I have added the report from the eye doctor to the website in the hopes it helps someone.
Karen wakes up in the morning and is no longer blind. I don’t know if she even remembered any of this happening.
The vision problems do come and go as she mentions in the following sections.
Karen’s Duke Medical Records from the eye doctor and Dr. Gray.
The living have their privacy they must protect, Karen has no such issues anymore, so I’m putting her medical records on her site in the hopes they help someone. Maybe they will help someone find a cure for this dreadful disease of CSF Leaks. Also in this set of records is a report from Dr. Gray on CT Guided Needle Placement and a Blood Patch report in case you were ever curious about them.
There was one amusing point at the Duke ER. Being from Pittsburgh and it is December, we had studded tires on the van, which keep the vehicle from slipping on ice. The fellow parking the cars at the ER looked at my right front tire for a long time, then came over and looked at the left one. He said, “I thought you’d ran over a box of nails, but they all look like that?” Native people of North Carolina, apparently, have never seen studded tires.]
Back in North Carolina
Monday, December 3, 2012 at 6:19pm EST
I am in North Carolina. Bob and I made an urgent trip here for my spinal fluid pressure/headache. Too many new symptoms were cropping up so fast. The doctor here thinks that rebound intracranial hypertension or too much spinal fluid volume is stretching my dura and nerves.
Wednesday, December 5, 2012 at 11:43am EST
A couple days ago, the doctor down here did a lumbar puncture, and drained CSF. I had quick temporary relief of my vision problems, face burning, head full, nausea, lack of ability to sleep. The relief lasted until my brain replaced the CSF. My CSF volume is too high again. I feel it with vision problems, dizziness, head/face full and burning. I am having another LP to drain more CSF today. She said she would leave a hole in my dura to try to control this. I originally came down here for low CSF volume a few months ago, and a low pressure headache. That severe headache is gone. Now I swung too far in the opposite direction. I have too high CSF volume that has not responded to any medication.
Thursday, December 6, 2012 at 1:44pm EST
I am still in North Carolina. I am still not doing very well. They are having a difficult time getting my spinal fluid pressure under control. The doctor did two lumbar punctures. One on Monday and yesterday to check my pressure and remove fluid. My pressure was higher yesterday, than on Monday. That’s not good. So far, no medication has controlled my spinal fluid pressure. My symptoms vary between dizziness, front of head and top of head burning and weird feeling, eyes burning, loss of smell and taste, noise in ears, and a few others.
Saturday, December 8, 2012 at 7:53am EST
I am not sure what is happening. My spinal pressure keeps wanting to go high, and medication alone was not enough. The doctor put a controlled size hole in there to help control the pressure.
Saturday, December 8, 2012 at 2:53pm EST
I do not feel as good as I should. Since I have not heard from the doctor to know her intentions, we’ll probably come home so Bob can go back to work. I am nervous with this choice but I have no idea when or if I will hear from the doctor again.
Sunday, December 9, 2012 at 5:03pm EST
I heard from the doctor. I am coming home tomorrow. My head does not feel perfect, but it does not hurt like it did when I came down either.
Thursday, December 20, 2012 at 2:44pm EST
I had blood work today. About an hour later my PCP personally called me. My potassium is very low. [This was causing Karen heart problems!] I am on potassium supplements. She wants me to increase my potassium today, and get another blood test tomorrow to check it.
Friday, December 21, 2012 at 6:36am EST
Right now my potassium is very low. If it isn’t one thing, it’s another that prevents me from doing what I want too. It gets lonely here.
[Karen tried to tell me how lonely she was here. I blew her off telling her she had Garth. I heard the words, I did not listen. Karma now has me living a lonely life in a house that was once a home.]
Friday, December 21, 2012 at 7:05am EST
If I can’t get my potassium level up, I will be in the hospital, very soon.
Sunday, December 30, 2012 at 12:14pm EST
I try to keep positive. I am more positive than I used to be. I have only my husband. I have no children … no help with the loneliness. I do not always talk about my issues with others because no one wants to hear it all the time. I do get lonely with my husband gone 12 hours per day, and some nights when he is at his Mom’s.
[I mow Mom’s grass once a week.]
Sunday, December 30, 2012 at 12:37pm EST
How many animals do you have? I have one dog. He is an older very gentle dog, but I still find him very difficult to take care of frequently. I always have pain. It’s the long hours alone every day that bother me the most.
Sunday, December 30, 2012 at 12:44pm EST
My dog’s name is Garth. He is the brown dog in my photos. The other dogs are either dead, or not mine.
Sunday, December 30, 2012 at 12:57pm EST
… I enjoy our chats. It helps a small bit with the loneliness.
http://www.pandemicofdenial.com
Karen’s Journal ~ 2013
Saturday, January 12, 2013
“Just keep telling her that you’ll be there with her and you’ll make it through this together.”
[I’m sure that is what she was wanting from me. Sadly, I did not do it enough. ]
Thursday, January 17, 2013
... Doctors often don’t agree with one another. It can be hard to get two to agree. It’s unnerving and very scary to us as patients when doctors do not agree on such an important diagnosis.
Friday, January 18, 2013 at 11:35am EST
Pray for my Mom. She’s being admitted to the Clarion hospital with either the flu or pneumonia. She has advanced pulmonary fibrosis and is 24/7 oxygen dependent. It’s not the pulmonary fibrosis that is ultimately fatal, but pneumonia. I won’t go see her, unless it becomes obvious she will not get out alive… Pray for things. I should not go see her because if I catch a cold, get the flu or whatever, my cerebral spinal fluid pressure will climb ever higher, and I will need an emergency trip to North Carolina. Stress causes instant high CSF pressure spikes, and this one is brutal.
Saturday, January 19, 2013 at 2:59pm EST
… As for my cerebral spinal pressure spikes, or increases, my brain got used to making too much cerebral spinal fluid for 23 years to compensate for the leaks. It will take a LOT of time for the pressure issues to settle, probably a year or so. If I get another leak and have it patched, than that will further increase the time for things to settle. My activities of daily living are restricted until this settles down.
Wednesday, January 23, 2013 at 12:27pm EST
My intracranial pressure is fluctuating a bit causing different symptoms.
Tuesday, January 29, 2013 at 2:52pm EST
I am confused with HP and LP myself. Prior to Dr. Gray putting two holes in my dura to relieve the HP, Diamox helped my headache when upright. My eye issues with rebound HP were blindness. It started with a little spot here and there going black for a second or two, then progressed to complete blindness that lasted about a minute! Dr. Gray put the holes in my dura at this point, and I have not noticed any more vision issues. I still have HP issues and need Diamox, just no eye issues. I think I alternate between HP and LP on the same day. I have a headache all the time, upright and lying down. I wonder how much of that headache comes from inactivity and my muscles weakening? My symptoms originally started with a car accident 23 years ago, but I think that I had undiagnosed HP with no leaks prior to that. I think my dura handled the extra stress from HP, until the car accident added more stress. I have virtually no support system other than my husband, and the board. My family doesn’t believe me. Since I had this problem for 23 years, I did not have the opportunity to make friends.
Wednesday, January 30, 2013 at 11:09am EST
This CSF crap began when I was 20. I did not have blurry vision with HP. I went straight to blindness. I had many other neurological symptoms too. I reached the maximum dose of Diamox and HCTZ, and my pressure/volume kept going higher. I posted in detail about this experience on the private [CSF Leak Facebook] group. I wonder if HP bothers us more because we leaked for so long? Not enough research exists to prove or deny that. Every time I feel a little LP, I wonder am I leaking again. … One of my neighbors, that I do not know very well may have the potential to become a good friend this summer. She has some health issues that prevent her from doing similar things as us, because of that I was not ashamed to tell her how much I need to rest. When we have been together since fall, we did not talk about our health the whole time. No one wants to hear that. We seemed to understand each other. I have a lot of acquaintances, but very few physical friends because telling them how much I need to lie down is embarrassing. I would feel better mentally if I went back to my usual exercise routine at the YMCA but HP is unrelenting if I do more than gentle exercise at home. Prior to seeing Dr. Gray, I forced myself to exercise through the most horrific headache everyday.
Thursday, January 31, 2013 at 11:35am EST
…If I had a child, I too, would feel guilty about not being able to do things other Moms do. … Brain fog Loss of short term memory My ability to follow and participate in verbal communication is diminished [, I also have] systemic issues with tendons (I do not know if this is from the leaks or the anti-biotic, Levaquin®) back, neck, head pain My muscles throughout my body get as hard as a rock and become very painful. I have other symptoms, that I cannot think of right know. I always have a headache and neck pain. At times, I do not think Diamox or HCTZ do anything. Yes, I feel like my brain is swimming in CSF. In the past when I shared with others what I was going through, I was rejected. So, I am very cautious about who I share this with.
Saturday, February 2, 2013 at 10:12am EST
My HP is out of control. I have spoken with Dr. Gray. If I cannot get it under control with 3000mg of Diamox per day, I have to go see her, and she will put another hole in my dura. I have been on 3000mg of Diamox for 48 hours now. I do not feel that it is helping.
Saturday, February 2, 2013 at 5:23pm EST
I hope that I make sense because this HP is out of control… I don’t think Diamox does anything. My pressure/volume is building. The HP headache is becoming worse, and some of the symptoms that I mention below are beginning to come back. I feel like I did in in the early stages of the out of control HP in late November/early December. I had to make an emergency trip to Dr. Gray. Dr. Gray said she would call me again today or tomorrow. If she does not, I will call her Monday. I am going through some old email to remember things about that HP in late November/early December. Despite two different anti-nausea medications, I got so sick that I could not keep food down. The blindness, very loud tinnitus. I lost my sense of smell and taste. I was very dizzy. My face felt like it was on fire. I could not sleep, even sitting up. I couldn’t balance. I feel like I can’t think more with HP than LP. Before Dr. Gray put in holes my opening pressure was 14 1/2. When my pressure/volume was out of control it my opening pressure was 15 3/4. BUT Dr. Gray didn’t go by just the numbers. She explained to me that my pressure was not going up because my dura stretched from the extra CSF. When my dura stretched, it pulled and irritated my cranial nerves, giving me all kinds of symptoms. Dr. Gray said that some people had a dura like mylar, meaning that their dura did not stretch. In these people, pressure would rise. Other people had a dura like latex that would stretch causing an increase in volume, and not necessarily an increase in pressure. Ever since my accident twenty three years ago that caused my CSF leak, I have a hard time following verbal conversations. I did not have a problem with that until that accident.
Dr. Gray has not mentioned a shunt. I saw her three times. Last September, she did patches in my mid-back. I believe she patched the wrong area this time because HP lasted only 24 hours. In October she patched my low back. Apparently, this is where my leaks were because HP has been out of control since. In December, I went back and she put two holes in my dura during two lumbar punctures. My pressure/volume continued to rise after the first one. Because she wanted these holes to continue leaking, she did not do blood patches or require me to lie down after the procedure. My worst symptom with HP is probably the headache.
Saturday, February 2, 2013 at 5:44pm EST
I forgot to add, the first time I saw Dr. Gray, she put several patches in my thoracic area. I was back in LP within a day. The next trip, she patched my lumbar area, and I have HP every day since.
What Is Wrong with My Hip
Saturday, February 2, 2013 at 7:55pm EST
My short term memory is bad. My husband says that I repeat things. [A lot!] You know what, I don’t remember doing it unless he points it out! I don’t know how to determine if a dura is like latex or mylar. I don’t know if Dr. Gray could tell on the CT scan, or my symptoms. Connective tissue disorders have been mentioned in the past, but nothing definitive. I believe the systemic tendonitis that began after Levaquin® was caused by that drug or the infection. Levaquin® saved my life from cellulitis.
[It also ruined her future life! No one discussed the life-long pain and complications from this drug!]
My left ilium [hip] is in an inflare and rotated posteriorly. My right ilium is in an outflare and rotated anteriorly. Unfortunately, I believe this was caused by an injury when I was younger that was never treated. [Fell off the swing when she was four.] These obliquities (spelling) cause muscle imbalances and microtrauma throughout my body.
I have HCTZ but Dr Gray did not want me to take it this weekend. I have pulsating tinnitus when my volume is up like right now. When my pressure/volume is good, I have no tinnitus. When it rises a little, I have a high pitched whistle that keeps getting louder the higher my volume/pressure goes. Then turns into loud pulsating tinnitus.
I will pray for you, too. I am glad to meet you, also. Many times I feel like my seemingly random symptoms must be psychological. Many of the people around me believe that if I say anything. So I say nothing about it. My Mom asked me tonight, “Would you go to Duke for the low pressure headache again, if you knew this was going to happen?” I told her “Yes.” She was insinuating that I made a mistake treating the low pressure headache…
Saturday, February 2, 2013 at 7:58pm EST
I wonder if the holes Dr. Gray put in last time healed, or if my brain is making CSF even faster.
Sunday, February 3, 2013 at 2:10pm EST
The doctor at Duke wants to work me into her schedule for a lumbar puncture to remove CSF and create another hole. She did this same procedure two months ago. I haven’t heard back on a date, but it will be in the near future.
Sunday, February 3, 2013 at 9:21pm EST
My cellulitis was very painful. It spread so fast that I could literally watch it spread! The cut on my leg was 2 and 1/2 inches long and down to the bone. It bled quite a bit. I had to go by ambulance to the ER. They cleaned, stitched it, and gave me a prescription for Keflex. All went well until about two days after I finished Keflex. My leg began hurting, but did not look infected. I went to my PCP. He gave me another prescription for Keflex. All went well again until about two days after I finished Keflex. My leg began hurting again, but did not look infected. I went back to my PCP again. I received a lecture on antibiotic resistance and no prescription for an antibiotic. [Doctors need to learn to *LISTEN*!!] Two days later, I had cellulitis from above my knee down to my ankle. I am not blaming my PCP because I agree that my leg did not look infected. My point is antibiotics being stopped too soon is not always the patient’s fault. That infection left my leg feeling like dead weight. I had to go to PT to relearn to use it properly.
Sunday, February 3, 2013 at 9:33pm EST
I saw a psychologist off and on for years since this began. I had to see her because the doctor at the pain clinic required it. She was downright hurtful. She treated me as if it was strictly anxiety and depression. Our relationship was adversarial. When I told her that I was going to Dr. Gray, she tried every psychological trick to get me to change my mind, when I refused, she ended our relationship. What did she have to be afraid of? Was she afraid that she was wrong, and my headaches had a cause other than depression and anxiety? I don’t like to tell doctors about my anxiety or depression either… they think anxiety and depression is the primary problem. I do not have a good way to handle my family talking about me. It does get to me. They treat me like I made a lifestyle choice to be lazy, seek attention from doctors, etc. For as long as I can remember, we were brought up to hide our physical pain if there were no obvious swelling or bruising. We were ridiculed as being hypochondriacs as kids. When I was 4 years old, I walked around on a broken foot for 4 days without complaining is one example.
Sunday, February 3, 2013 at 9:42pm EST
… I too, wonder why Dr. Schievink doesn’t do pressure checks. Dr. Gray got back to me. She wants to work me into her schedule for a pressure check, remove CSF, and put in a bigger hole. I don’t know when that will be. Probably within the near future.
Monday, February 4, 2013 at 2:13pm EST
…I don’t understand why people are unsupportive when you or I say something about surgery or some other procedure we had. Maybe it makes them feel vulnerable? I don’t know. It’s not like we talk about our health all the time. Sometimes, we want to tell them a little bit about ourselves but we do not want them to tell everyone else what we said! I feel betrayed when I later find out that they told someone what I said without my permission. Anything we type in private messages or in email is saved on computers other than ours and is not really private. Even though we do not show these messages to others, we have no idea if anyone reads these messages at Facebook. I noticed your disappointment with people that love to gossip. I keep to myself partly because of my pain, and partly because I am not the type of person that likes to run around. It gets back to me that the gossipers here gossip about me being ‘weird’ because I keep to myself… True friends will stick with you when you have a chronic illness… My doctor at the pain clinic will still see me. The psychologist at the pain clinic will not see me anymore. The doctor was (ineffectively) treating my headaches, so not seeing him is my choice. I would like to talk with someone about how I feel mentally, BUT it has to be someone that understands chronic CSF leaks. Otherwise, treatment goes down the anxiety and depression route again... I doubt any counselors, or psychologists are knowledgeable about CSF leaks unless someone close to them was treated by Dr. Gray or Dr. Schievink. I have not heard from Dr. Gray. Last night, my neck cracked very loud. I wonder if that changed my CSF flow? My CSF volume is still high, but not as high as it was before the crack. They are talking on the private forum about being overweight and HP. I am not overweight. I am 5’11“. My weight is 170 [pounds] and going down because HP makes it hard to eat. [She was 165 pounds at the time of her death.] … I have to lie down several times every day for an hour or two each time.
Monday, February 4, 2013 at 5:06pm EST
I never had a blind blood patch [up to this point]. The sad thing is, if any doctor for 23 years suspected a CSF leak, a blind blood patch in my low back would have worked. My leaks are around L4 and L5. I found Dr. Gray on my own. She officially diagnosed a CSF leak. My own doctors were dismissive of the idea when I mentioned my orthostatic headaches and CSF leaks. Maybe that intimidated them. They treated me for years with little success. A doctor from a prestigious university finds the problem on the first visit. I had very little headache for the first month after Dr. Gray patched me. Then my HP went nuts.
Monday, February 4, 2013 at 6:26pm EST
I took Levaquin® for a couple months in 2003. Cellulitis was very painful. More painful than the low pressure headache. My leg was an angry bright red and hot. During healing it turned purple. The pain went away when it was still purple. I believe my family thinks that if my low and high pressure were a “real” problem the local doctors would be able to fix it, and I would be as good as new. Since that’s not happening, the problem must be with me. I am lazy, seeking attention, etc.
Tuesday, February 5, 2013 at 2:02pm EST
Seems everyone says it takes 6 months to feel better from surgery. I wonder if it will take longer for long-term leakers? I definitely have HP, out of control HP. Every day it is getting worse. I am scared that I might blow another hole if Dr. Gray, and I cannot get a time set up.
Tuesday, February 5, 2013 at 8:42pm EST
My appointment at Duke is Friday morning. … I am getting a lumbar puncture, CSF removed, and I will not be required to lay flat for the hole from the needle to seal. In fact, we don’t want that hole to seal. We want it to continue to leak.
Tuesday, February 5, 2013 at 8:50pm EST
Dr. Gray put in two holes in December when my pressure/volume went out of control. I had some relief after the first hole. She removed 23 cc but that relief was short lived. Two days later my pressure volume was higher. She removed more fluid. I had some immediate relief both times. It took a few days for most relief because the cranial nerves were irritated.
Wednesday, February 6, 2013 at 12:15pm EST
I thought about your [relative’s] negative comment regarding you traveling to see doctors. Comments like that come from people that have never been sick, or had only common ailments that local doctors could treat. People that make those comments have no idea what we go through every day.
Wednesday, February 6, 2013 at 7:06pm EST
Our chronic illness makes it very problematic to maintain relationships with others. Our illness affects everyone of our relationships. The depression, resentment, anxiety, etc. build. Those around us do not understand how one day we can function almost normally, and the next day we can barely get out of bed. They can never truly understand our pain.
Wednesday, February 6, 2013 at 9:50pm EST
Going to Duke tomorrow. Things are not under control. I see the doctor Friday. Here’s a link for an idea of what I am dealing with:
http://mystory.kpaddock.com/FDA/Increased_Intracranial_Pressure_PubMed_Health_PMH0001797.html
Thursday, February 7, 2013 at 8:32pm EST
…I think the flu raises intracranial pressure. If you do get it, you may need more Diamox. I will let you know how it goes with Dr. Gray. I am kind of scared. She wants to leave this hole in my dura like she did in December when my volume went too high. This doesn’t make me nervous. She wants to use a bigger needle. That makes me nervous. I don’t want a low pressure headache.
Friday, February 8, 2013 at 5:02pm EST
I thought I had HP because my face and scalp hurt. I had no occipital pain like I had with low pressure for 23 years. My headache did not get better lying down. My opening pressure was 11 3/4. The very first time I was here with classic low pressure symptoms my opening pressure was 14 and 1/2. I am confused. She gave me a hole with a 20 gauge needle.
Saturday, February 9, 2013 at 12:39pm EST
I am confused. She put another hole in. She wants to get me off the Diamox. I did not take Diamox prior to the pressure check. I hope this hole doesn’t give me back the LP headache. I am confused. The first time I saw her my opening pressure was 14 and 1/2 and I had the usual LP headache. My opening pressure this time was lower than that, and it felt like the HP headache. Thanks for keeping me in your prayers. I have cysts.
[I do not recall her ever telling me this, nor can I find her telling anyone where they are?]
I do not know how many. If I had a magic wand, I would wave it and make both of us better!
Saturday, February 9, 2013 at 4:48pm EST
I feel slightly better today. The pressure issue is so confusing. How can my pressure be less than it was when I had typical LP symptoms? Dr. Gray think that this has to do with my pressure verses volume and stretchy dura. … I lose hope, too. It’s really hard to bounce back sometimes when I feel isolated physically from others. Thanks for praying for me. I pray for you, too. I always like it when we get less snow than they called for. A non-invasive way to check our ICP would be wonderful!
[NASA is working on this. Alas, too late for Karen. I’ll post details on Karen’s website.]
Sunday, February 10, 2013 at 1:50pm EST
I feel worse today than I did before I came to Duke this time. I am still in Durham. It’s hard to stay upright for any length of time. The pain is all over my head. It eases but does not go away lying down. I have to question whether I needed the extra hole she put in my dura. I would not be surprised if she wanted me to continue to wean off the Diamox to see how I feel, then if I still have problems to come back for patches. How can I go home and face the naysayers when this trip has, in fact, made me much worse? I am terribly upset!
Sunday, February 10, 2013 at 6:51pm EST
All I know is that my head hurts real bad. The tinnitus is loud and my eyes hurt. My pressure was 11 and 3/4, the lowest it has ever been. She put an additional hole in my dura and has me very slowly weaning off Diamox. This feels like low pressure because I am better lying down. … Not just with her, but sometimes I feel like I am a complainer. No, she did not mention a shunt. In hindsight, I think I was taking too much Diamox and my pressure/volume went too low, but my symptoms felt like high pressure. I am a member of one of the IH boards, but haven’t visited it for a week or two.
Sunday, February 10, 2013 at 10:36pm EST
… When I made the comment about feeling like a complainer, I meant it in the context of talking with doctors, and not so much in our conversations. … I feel hopeless now. The head pain, eye pain and tinnitus are horrendous! I feel like my face is going to implode on itself. I don’t think that I will be able to get to sleep without crying myself to sleep. The pain was much worse yesterday, then Saturday. Thanks for praying for me. I do the same for you. Hugs to you. Karen
Monday, February 11, 2013 at 9:58am EST
I heard from Dr. Gray. She wants us to stay a few more days. She put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox. My husband brings his work with him on these trips, but I still worry about his job…
Monday, February 11, 2013 at 10:18am EST
You’re coming to Duke this week. I am in Durham this week, too. Where are you staying? I am at the Comfort Inn. If we both feel up to it, we could go out to dinner or something. Friday, Dr Gray put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox.
Monday, February 11, 2013 at 10:53am EST
I am not sure if I will see her again. She wanted me to stay in town for a few days after stopping Diamox so I don’t know what will happen.
Monday, February 11, 2013 at 11:01am EST
She thought it was High volume, even though my pressure 11 and 3/4 was less than my original opening pressure when I first saw here. My pressure then was 14.5. I feel like crap. The head pain, eye pain and tinnitus are horrendous and unbearable! I feel like my face is going to implode on itself. My eyes became light sensitive yesterday. I cried myself to sleep last night from the pain. The pain was much worse yesterday, then Saturday. I told Dr. Gray everything above. She thinks maybe Diamox and the hole she put in Friday put me in low pressure. I am so confused.
Monday, February 11, 2013 at 11:11am EST
I thought that I had HP, but I think I was wrong. I am so confused. I feel so much worse now than I did before Friday.
Monday, February 11, 2013 at 11:24am EST
Yes, I talked with her today. She wants me to stop the Diamox. The nerves in my face have been irritated for the past few weeks. She thinks that I have a high volume problem because when she went to add fluid I complained about my face. I did not complain about my face when she removed fluid. I think those nerves are so irritated from low pressure that they fired random signals and that is why adding fluid hurt. I did not feel like my face was imploding until after I saw her Friday. Maybe stopping Diamox cold turkey like she wants me to will work.
[Later, Karen thought this was a bad thing to do.]
Monday, February 11, 2013 at 11:33am EST
I can be up for short periods of time. I could be up for longer periods of time before Friday.
Monday, February 11, 2013 at 3:00pm EST
I don’t know what to do. I can’t function like this at home, yet I have to because I have no support network other than my husband. She wants me to stay in town for a few days, so (I hope) she’ll do something (like maybe put a blood patch on the hole Jeff [Jeffrey Taylor, Dr Gray’s Physician Assistant] made in my dura) if I do not improve.
Monday, February 11, 2013 at 3:51pm EST
I am deeply upset about this. I think the original patches are NOT leaking. … She said she wants me to get better and not make multiple trips. If stopping Diamox is not enough, I don’t know what to do.
Monday, February 11, 2013 at 4:01pm EST
I was taking 3000mg of Diamox. I have been on 1500 since Friday. I can’t tell a difference, I HURT. I don’t know what she’ll do (if anything at all) if stopping Diamox is not enough, and this makes me anxious.
Monday, February 11, 2013 at 4:25pm EST
I have been thinking about you, but instead of her calling mine HP, she says it is high volume. I am going to send her a message later today mentioning the possibility of my facial nerves being so irritated from low pressure that they fired random signals and that is why adding fluid hurt.
Monday, February 11, 2013 at 4:30pm EST
My scalp, sides of my head forehead, all around my eyes, both cheeks and the skin between my nose and mouth all hurt. No, she did not patch me after she did the OP.
Monday, February 11, 2013 at 4:47pm EST
I feel like my face is going to implode since … Friday.
Monday, February 11, 2013 at 4:49pm EST
[Do your eyes ever hurt too? Feel like they are scratchy?] Yes, my eyes do that. This symptom started a few weeks ago about the time I increased Diamox.
Monday, February 11, 2013 at 4:52pm EST
I don’t think I am leaking from the original sites BUT I am not sure either.
Tuesday, February 12, 2013 at 9:08am EST
If I am still here, how would I get in touch with you? Dr. Gray said, she would patch me, if I need it after getting off Diamox. In December, I had HP not controlled by the medication, confirmed by Dr. Gray She had to create a hole in December.
Tuesday, February 12, 2013 at 9:49am EST
I have not been up much to tell how I will feel. I ate breakfast downstairs, and brushed my teeth with a slight headache. That is an improvement over yesterday.
Tuesday, February 12, 2013 at 11:42am EST
Just walking around the mall for a little exercise is a stress reliever.
[Karen rarely did this, even though I often suggested we go do it.]
I hope that, Dr Gray patches just enough this time to control your HP without blowing more holes. You have been though so much with all the failed patches and surgery.
I never realized how bad HP can get until December when 3000mg of Diamox and 100mg of HCTZ did not control mine. I did not know that chronic leakers have a lot of shunt malfunctions. [Another ‘leaker’] talks about her shunt on the forum. Maybe shunts fail from over working?
I feel slightly better than I did yesterday. We’ll see if stopping Diamox is enough. I have not been up for very long today, either. Walking more than 15-20 minutes is painful for me because I had bilateral tendonitis in peroneal and posterior tibialis anterior tendons for a couple years. Over a period of four years, I had 19 physical therapy prescriptions for tendonitis in multiple locations throughout my body. I believe the anti-biotic Levaquin® is responsible for this. The PT diagnosed tendonitis every time. Tendonitis is not an overuse syndrome for me.
My uncorrectable (without major surgery) pelvic inflare/outflare, posterior and anterior rotations do not help.
Since I found my current massage therapist who is trained in the John Barnes Myofasicial Release technique last year, I have not needed more PT. I look forward to meeting you.
Tuesday, February 12, 2013 at 2:50pm EST
I have been up for almost 3 hours and my headache is mild to moderate. I will probably lie down in a little bit. We’ll see if two 20 gauge holes (the one from December and the recent one) control high pressure without medication and keep me out of low pressure. If not, I will get a blood patch. … I would like a doctor closer to home to treat this, also. Before I came to Duke, the local doctors looked at me like I had 3 eyes when I would describe these symptoms. I was dismissed as being anxious and depressed. Anybody would be anxious and depressed if they felt like we do.
Tuesday, February 12, 2013 at 6:50pm EST
On Friday, the doctor put another hole in my dura (the sac that surrounds your brain and spinal cord) to let cerebral spinal fluid leak. That hole and my pressure reducing medication made my intracranial pressure go way too low, with horrendous pain and neurological issues.
Right now we are waiting until the pressure reducing medication is out of my system to see if I will need blood patches. We need to find a balance among the intentional holes she put in my dura, minimizing high and low pressure symptoms, and taking minimal medication for high pressure.
Tuesday, February 12, 2013 at 7:11pm EST
My head feels awful now when I am upright. It feels like a second half of the day headache. I had tendonitis in dozens of tendons. Most of the time, I had it in multiple sites and in multiple stages of healing, simultaneously.
Tuesday, February 12, 2013 at 10:13pm EST
WOW...This condition causes a roller coaster of emotions. When you leak after you were fixed, of course you feel more down, depressed, and discouraged. I know. The people around you don’t understand, and in most cases don’t care. Well, I care. I wish that I had the right words to say now, but I do not. Have you called … Keep me updated. I will pray about this. I do not know how many cysts I have. Diverticulti is mentioned in my records, so I must have some … any chance menopausal hormones may be involved? I am in perimenopause and get bad headaches from that. I have those headaches when I am upright and lying down. My perimenopause headache overlays my leaking headache. You can imagine how painful having two headaches at the same time is. Today, my headache is a second half of the day headache. Maybe more Diamox will be out of my system tomorrow. If not, I will need another blood patch.
Wednesday, February 13, 2013 at 11:27am EST
Thanks for asking how I am doing. I am still in NC. My face is burning again, and the headache is bad.
Wednesday, February 13, 2013 at 12:00pm EST
I thought that I felt better yesterday. Today, I don’t think so. Dr. Gray said she would patch me, if necessary.
Wednesday, February 13, 2013 at 5:34pm EST
I do not take hormones. I never tried any. Let me know how it goes with the therapist. I live in a rural area so my choices for therapists and everything else is limited. You might be on to something with regards to secondary Addison’s disease and no longer needing steroids. Like you said, reduce steroids under the care of a doctor. You don’t want another adrenal crisis. I have no idea what my cortisol levels are. How do you find someone to advocate for you with your health? Unless, I am really sick, I think I do a good job advocating for myself.
Wednesday, February 13, 2013 at 5:47pm EST
Dr. Gray is going to check my pressure tomorrow.
Wednesday, February 13, 2013 at 5:49pm EST
TODAY: The more I have been upright, the more my head, face and behind my eyes hurt. A few minutes ago, I lied down and the headache improved, but has not gone totally away. YESTERDAY: I had a mild-to-moderate headache this morning that progressively got worse later in the day. My eyes became a bit light sensitive later in the day. Lying down relieved the headache.
Wednesday, February 13, 2013 at 5:56pm EST
I hear ya about the symptoms changing. Mine do by the hour, and sometimes by the minute.
Thursday, February 14, 2013 at 8:26am EST
I have to have another lumbar puncture today. My intracranial pressure goes up and down. I thought I could tell the difference between high and low, but I was wrong last week. The symptoms can be exactly the same.
[Karen was taking a *lot* of Diamox to lower her pressure because she thought it was too high, when it was too low!]
Thursday, February 14, 2013 at 12:27pm EST
I see Dr. Gray at 4pm today for a pressure check. We may go home this weekend so Bob can physically be at work. He can and does bring his work with him, but his employer likes him to be physically present, too.
Thursday, February 14, 2013 at 1:07pm EST
The day after patches, I mostly stay in bed. I take things slowly for a while. We are on the 3rd floor at the Comfort Inn.
I am frustrated that I have not been able to exercise at home at our YMCA. Pressure issues have prevented me from doing that for a few months. I don’t know for sure what day we will go home.
Thursday, February 14, 2013 at 2:10pm EST
I see Dr. Gray at 4pm. The brain dead/brain fog feeling, what causes it? Diamox? HCTZ? CSF pressure changes? Permanent brain injuries from leaking? A combination of these things? I thought that I could tell the difference between high and low pressure. I was wrong. I worry about leaking again. Who doesn’t? I know that I am leaking now, but that’s because of the second hole. I will let you know how it goes after I see her. I can’t wait till we are well, either.
Thursday, February 14, 2013 at 8:36pm EST
We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot’s B and I felt better. She patched the hole from last week.
Thursday, February 14, 2013 at 8:49pm EST
I am very confused with the pressure issues. My high and low pressure symptoms do not correspond with the number. My pressure numbers have varied between a low of 11 and 1/2 and 20. I have what feels like very slight HP, but I don’t know. I was sure that I had HP last Friday when it was low.
Thursday, February 14, 2013 at 9:00pm EST
Frustration, anger, anxiety, depression, sadness, confusion, fear of the unknown, and many other feelings accompany a pressure change. The fear of leaking again is very real. Others do not understand why we feel this way. … We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot’s B and I felt better. She patched the hole from last week.
Friday, February 15, 2013 at 11:00am EST
We will probably go home tomorrow because of Bob’s work. They are wanting him. Because the drive is so long, 10 hours with no traffic, we have to leave very early.
Friday, February 15, 2013 at 1:05pm EST
My face hurts a little today. I do not have the all over headache. … We may go home tomorrow.
Friday, February 15, 2013 at 10:19pm EST
I have a little HP. I am really stiff, but that’s because I have not been moving much. It’s not that I want to go home, Bob’s employer wants him back, or else we would stay until Sunday.
Saturday, February 16, 2013 at 8:06pm EST
My hubby’s boss told him Friday that they wanted him to work Sunday, which is why we had to come home today.
[Sadly, I put my job before Karen, and she paid the ultimate price, when the Vishay ‘TFDU4301 drop in replacement for the TFDU4300’ failed, see: Does ‘Drop in replacement’ strike fear into your Soul? It should... [Resume anyone? I will never put anything before family again!]
Saturday, February 16, 2013 at 9:19pm EST
We came home today. I can tell my intracranial pressure is up. I have to minimize all bending, twisting and lifting until the patch heals. The higher intracranial pressure puts extra stress on it, which is why I have more restrictions again.
Sunday, February 17, 2013 at 7:30am EST
There is no quick fix. In my trips, I met several others with the same conditions. We arranged to meet over FB. We are all patients there for this.
Sunday, February 17, 2013 at 10:58am EST
If people knew what those of us with chronic spinal headaches/spinal fluid leaks, and the resulting rebound intracranial hypertension when doctors repaired those leaks go through on a daily basis, we would get more support and help from others. When this condition becomes more well known, this will become a reality. If it wasn’t for our parents and my husband’s job, I’d love to live in the Durham/Raleigh North Carolina area. I hate to come home each trip.
[A dream lost: Karen wanted to move to Durham or LA so she could meet more people and make physical contact with friends, not just on the computer.]
Sunday, February 17, 2013 at 12:18pm EST
I feel about the same as I did yesterday. I thought I had HP because my head pain was in front of my ears, so I took 3000 mg of Diamox. Apparently, LP and HP symptoms were exactly the same. I don’t think I was leaking. I think I took too much Diamox. Jeff put a hole in my dura on Friday with a 20 gauge needle. That is what she patched on Thursday. We live in a very rural area. More rural than Durham. I have to drive anywhere I go, and do things by myself since I do not have close physical friends. Well, I have one, but she has breast cancer that has metastizised. I do like to exercise at the YMCA, but have been unable to since my blood patches in October. Exercise is a good stress reliever. I have been leaking for 23 years, which is why I have not had the opportunity to make many physical friendships.
Sunday, February 17, 2013 at 3:30pm EST
I made good memories this time in NC. I met in person several others with my condition. I met all of them on FB several months ago.
Wednesday, February 20, 2013 at 9:57am EST
I don’t know if I am feeling high or low pressure. They feel this same. I feel like I did when I went to see Dr. Gray. My pressure was 11 1/4 when she checked it. Even if I was leaking again, it would be higher than that, because I am taking only 25mg of Topomax twice a day and no Diamox, yet I feel exactly the same. I don’t get it. Dr. Gray told me not to take Diamox. My Mom is in the hospital right now. She went yesterday with dehydration and fever.
Thursday, February 21, 2013 at 11:44am EST
Sometimes, I don’t know what to do, or what is affecting me. I worry about my pressure being too high or too low, my perimenopause hormones, the side effects of starting topamax last week, and my Mom. So many things. I don’t know what causes what symptom. Talking on here is the only outlet that I have. My body is so stiff and painful from not not doing regular exercise for a few months. I have underlying issues (that I do not think, but I cannot prove) are not related to leaking that cause this this. My Mom is doing about the same as she was yesterday.
Thursday, February 21, 2013 at 8:05pm EST
I don’t know for sure if I am having symptoms from Topamax. I have a rash on both feet that does not hurt or itch. I don’t know if that is from the drug or something at the hotel.
[If it was the hotel, I did not get it.]
Thursday, February 21, 2013 at 10:34pm EST
Tonight, I feel like I have HP. I had a massage tonight. Dr. Gray okayed me to for those. My massage therapist has a masters degree and two bachelors degrees all in health related fields and many certificates related to massage. She worked on the problem areas in my pelvis, my right shoulder, and both wrists. My right shoulder has been stiffening up. Probably because I am afraid to exercise it too much. My left wrist started to hurt a few days ago, and I don’t know why. I will get back to exercising. I love to exercise. It is hard, (mentally) for me not to exercise. I never know when my period is going to start. For the past 6 months, my cycles have ranged from 23 to 50 days long. I noticed that a week or two before my period begins my headache gets much worse. For 24-36 hours during my period, I saturate a ultra tampon every hour. It’s impossible to leave the house. Before my gynecologist will treat that, she wants me to have an ultrasound which requires that I drink 32 ounces of water to fill my bladder. I do not want this test because I believe that will put too much pressure on my dura. Fibromyalgia has been mentioned, but I don’t believe it. I believe all my other pains are caused by my pelvic obliquities. My Mom must have misunderstood the doctor. She is feeling better. They sent her home today. If she had a blood infection, they would have kept her longer. When she first told me she had a blood infection, I repeated it back to her a couple of times, to be sure I had it right, I am not sure where the misunderstanding occurred. I think of you throughout the day. Not many people know what we go through with this illness, especially after 20+ years!
Saturday, February 23, 2013 at 1:40pm EST
I hurt today. My head pain is there, but not too bad. It’s the rest of my body that hurts, especially my shoulders. I know if I did exercise other than gentle stretching, I could work this out, but I am afraid of blowing the patch. … I had a headache everyday for 23 years.
Saturday, February 23, 2013 at 1:55pm EST
I hurt today. My head pain is there, but not too bad. It’s the rest of my body that hurts, especially my shoulders.
Saturday, February 23, 2013 at 2:08pm EST
After my successful patch in October, I could tell the difference between HP and LP. LP was pain in the back of my head, and HP was pain in front of my ears. I went back this time because I was sure Diamox was not controlling my HP, because it did not in December. This time, I was taking 3000mg of Diamox when she checked my pressure, and it was 11 and 1/2. I told you she thought that was HP but a few days later patched the hole. I stopped Diamox on Sunday when we were in NC. On Thursday, when she patched the hole, my pressure was up to 16 1/4. This pressure is higher than it was when I saw her in December for actual HP symptoms with occipital nerve swelling. I have no occipital nerve issues now. I did not have a headache in the back of my head with my pressure at 11 and 1/2. My headache was all in the front of my head. When I saw her the first time in September, my headache was in the back of my head. I had typical LP symptoms. My pressure was 14 1/2, higher than it was this last time. These numbers seem so meaningless.
[Are they meaningless? Are there other things at work that we do not yet know to look for?]
Saturday, February 23, 2013 at 2:23pm EST
In my own case, the number is certainly subjective. Most of the research into this condition has been done within the past decade. I am doing very gentle exercises at home. The further out that I get from being patched, the more exercise that I will do. I know regular exercise in moderation helps most conditions. I was sure this time that I had HP…Now I can’t tell the difference between HP and LP!
Saturday, February 23, 2013 at 3:10pm EST
I would like to know why the symptoms changed to. Physical therapy may it easier to do lifting and bending. It all depends on what causes the soreness. PT can help atrophied muscles. PT won’t help pressure issues. You may have a combination of atrophied muscles and pressure issues. It would be great to find a PT that understood CSF leaks but I doubt many, if any, exist.
[Create yourself a a new market and become one of these PT’s! One of Karen’s friends here in PA is doing this.]
Saturday, February 23, 2013 at 3:33pm EST
In hindsight, my symptoms of HP and LP changed when Dr. Gray put the hole in my dura in December. She had to do that, because I was losing my vision from the HP. Apparently, that changed the dynamics, somehow?? I hope this last patch holds over the hole the second hole Jeff created on this last trip. I wish that I had a way to tell if the patch was holding.
Saturday, February 23, 2013 at 3:54pm EST
I had a thought. My HP and LP symptoms changed when Dr. Gray put a hole in my dura in December.
Saturday, February 23, 2013 at 6:26pm EST
My shoulders hurt like this before I went to NC. My pressures down there this time were 11 1/2 and 16 1/2. I could be wrong, but if my shoulder pain was related to leaking, I would have noticed a difference with one of those pressures? I did not.
Saturday, February 23, 2013 at 9:43pm EST
My head hurts, but not very bad today. My headache can change by the hour. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don’t know why.
Saturday, February 23, 2013 at 9:52pm EST
My head hurts everyday, but not very bad today. My headache can change by the hour. I have the same thought many times, that is, I wish I could be around someone that understood so I would not have to put on my happy face for them! No explanation, just a mutual understanding. It would be so nice to live closer. Like I said on FB today, I don’t want attention, I want understanding. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don’t know why.
Saturday, February 23, 2013 at 9:54pm EST
Our issues make it difficult if not impossible to have genuine friendships with normal people. My short term memory is awful, especially with verbal conversations.
Saturday, February 23, 2013 at 9:57pm EST
When I left she thought LP may be my problem because I had a fairly severe headache in the back of my head when my pressure was 16 1/2. That’s why she patched the hole that Jeff put in the week before. Physical therapy can help with tight back muscles. My problem is I have the underlying issue with my pelvis that cannot be corrected which predisposes me to tight painful muscles. [Issue from when she was four.]
Saturday, February 23, 2013 at 9:59pm EST
My self confidence has been negatively affected from 23 years of leaking.
Sunday, February 24, 2013 at 2:07pm EST
I know the feeling of being accused of attention seeking, lazy, a mental case, and so on. I feel sad, depressed, and this increases my feelings of isolation. Sometimes you can tell when a person asks you if they are serious by their voice inflection and body language. [Things which she studied.]
I hear the “maybe you need to get out more”. … When they ask questions about my health, I am very vague and censor myself because anything that I say can and will be used against me.
My pelvic pain is not from my female issues. It is from lax ligaments holding the pelvic bones together. The compensations extend the whole way up and down the kinetic chain.
[A new technique called ‘Prolotherapy’ can treat weakened ligament, or tendons. Many cases of back pain are not due to ‘discs’ rather the week ligaments that are not holding the discs in place.]
Sunday, February 24, 2013 at 2:09pm EST
I have not had too many physical diagnoses through my journey. I got blown off as having somatom disorder, major depression, and chronic fatigue syndrome.
Sunday, February 24, 2013 at 2:12pm EST
I cannot say for sure if you are still leaking. I can say that, when Dr. Gray put the hole in my dura in December my symptoms of high and low pressure became the same. Strengthening your core with the help of a physical therapist may improve some of your symptoms. Some of your symptoms may come from deconditioning. Those symptoms a good physical therapist can help.
Sunday, February 24, 2013 at 2:54pm EST
We are not getting much snow. We get a bit every week. You would probably think we get are getting a lot, but we don’t. When we were in NC in December one of the Valet drivers thought we drove through nails. He did not realize those were studs in our tires for driving through snow and ice. [He had never seen these and asked me about them.]
Sunday, February 24, 2013 at 4:50pm EST
Other things sometimes hear, “Forget about your headache and get on with your life”, and “Get up and do something, you’ll feel better.”
Monday, February 25, 2013 at 2:52pm EST
I don’t know if I am in HP or LP. I can’t tell if this patch is blown. I wish I could. I increased the Topamax this morning as I was supposed to. The rash on my feet has remained the same since I came home from NC. If it gets worse now, I will know it is the Topamax causing it. The rash doesn’t bother me. It’s not ichy or anything. I sssooo wish we could sort out LP and HP. It would make things so much easier to deal with.
Monday, February 25, 2013 at 6:04pm EST
I have not had any other adverse reaction to Topamax. I spend all day here every week day alone. It gets lonely. I suppose that is better than being around people that don’t get it. I can drive, and have a vehicle. ICP issues prevent me from going many places. I know what you mean about driving when you shouldn’t. Sometimes you have no choice but to drive somewhere regardless of how you feel. I have to do that, occasionally.
Tuesday, February 26, 2013 at 11:13am EST
My headache isn’t too bad. My shoulders, especially my right one is not calming down. This has not happened before. Myofascial release helps.
I never had PT my shoulder in the past, but had PT for my neck, back, elbow, and headache. Many of the exercises are the same. I began to do those exercises as HP allows. Tendonitis is starting in my left wrist.
I will do everything within my power to avoid going to PT. Going to PT with HP will not end well. I am getting another massage tonight.
Tuesday, February 26, 2013 at 5:11pm EST
I will make it back to exercise, eventually. Anything that increases spinal fluid pressure like grocery shopping (lifting the grocery bags), running the vacuum cleaner, etc are still no no’s for me.
[No one truly understood how much Karen exercised and how much she missed it!]
Wednesday, February 27, 2013 at 8:05pm EST
I am having a low pressure headache so if you do not hear anything from me for a day or two, that is why. I hope that I did not blow the patch.
Wednesday, February 27, 2013 at 9:14pm EST
I started taking Topamax when I was at Duke. I did a little research on it. The half life is 19-23 hours. I increased the dose from 25mg twice a day to 50 twice a day on Sunday evening. I pray that my low pressure symptoms today are because the drug is too strong for me.
Thursday, February 28, 2013 at 11:10am EST
I am lying in bed with the Netbook. I researched Topamax a little more. The half life is 21 hours with good kidney function, which I have. Steady state is reached after 4 to 5 days in patients with normal renal function. I began the higher dose on Sunday night, so my steady state may have been reached on Wednesday, and the dose was too high. This is what I hope happened, and not that I sprang a leak. I did not take it last night or this morning. My head is slightly better than it was last night. How are you feeling? I wish I had local people that understood. Not because we would talk about this all the time, (we would not) but they would understand if I had brain fog or needed to cancel at the last minute, etc.
Friday, March 1, 2013 at 1:52pm EST
We won’t be moving as long as our parents are alive. But, yes, Bob and I love it down there. I’m being treated in North Carolina for intracranial hypotension, or too low of spinal fluid pressure.
The world of modern neurology, which is what cerebral spinal fluid issues fall under, is relatively new compared to other areas of medicine.
Cancer cures and treatments were being fervently worked on many, many decades ago because it affects so many and there was a race on to find treatments, and cures.
[More people are employed in the search for treatments (not cures) than actually have cancer.]
Most of the research on Cerebral Spinal fluid issues has been done with past decade. Recently, they discovered that Cerebral Spinal Fluid can be a major influence in dementia, so the pace of Cerebral Spinal fluid research will pick up. [Read: here and here.]
Cerebral Spinal fluid problems will become more widely known as this research is done.
I don’t think that anyone even realizes the severity of the pain and limitations of intracranial hypotension, or any illness for that matter, until they have experience it so they really can’t comprehend the pain that we go through.
Saturday, March 2, 2013 at 3:20pm EST
I think that one of the patches in my dura has blown, putting me back in the low pressure state with the horrendous headache that is there all the time. It’s not just the headache. Your brain does not like the swings in pressure changes.
Saturday, March 2, 2013 at 9:47pm EST
I don’t think the leak that I sprung causing intracranial hypotension is as big as before.
Saturday, March 2, 2013 at 9:53pm EST
Bob asked me, why don’t you have her do another myelogram to find and seal up all your leaks. I doubt she would do another myelogram. She would not, nor would I want her to seal up every leak because the rebound high intracranial pressure would be horrendous.
Sunday, March 3, 2013 at 10:18am EST
I have a LP headache. I stopped the Topamax, and the headache is still there, just not as bad. I think that I blew the patch.
March 3, 2013 at 3:17pm EST
I had undiagnosed leaks before I became fit. I was never fat even then. In the year 2000, I joined the YMCA. I used the pool. I took chair yoga. That class is more geared toward senior citzens. I am 43. I am trying to do some exercises at home at the moment.
Sunday, March 3, 2013 at 3:21pm EST
I have multiple issues that cause headaches, CSF leaks, the issues that I previously described about my pelvis that throw off my whole kinetic chain, and my period. Yep, my period started a couple days ago. Usually, there is some degree of overlap among the headaches. I think that I can distinguish which is which. Dr. Gray wants me to cut Topamax down to 25mg once a day at night. I think that I might be leaking still. If I do go somewhere, people I know see me out and think that I am doing well because I look so good…
[From a friend after Karen’s death, it is relevant to what Karen just said: “Bob, I just read about Karen in the newspaper. I am so sorry for your loss, I had no idea she had been that sick! The last time I saw you guys in Walmart she looked better than I remember her in a long time, she did not look like she was in as much pain.
“I am sure she is in a better place now, without pain. She was always such a nice person, and she was lucky to have you to take such good care of her, and do all you could to help her relive her pain.”
Please see: “You don’t look sick!” —The Spoon Theory, by Christine Miserandino.]
Monday, March 4, 2013 at 4:06pm EST
Does your neck usually hurt? My neck always does. It has every day for as long as I have had headaches.
Tuesday, March 5, 2013 at 9:06am EST
I read your message on the forum about when to give up trying to fix your leaks. … You also said that Dr. Grant no longer wanted to shunt you because leakers have too many problems with shunts. … As for me, I think I have a small leak. My shoulders only somewhat calmed down.
The problem is my kinetic chain is off because of my pelvis and I have not been able to do those exercises for months. I am slowly starting to exercise again, despite the pain.
Wednesday, March 6, 2013 at 1:37pm EST
I feel like I have a slow leak. My head is not too bad for the first few hours after I get up, but then it gets worse. My shoulders have been giving me trouble, too. I have been feeling more depressed than usual. I am alone all day, every day.
[I really wish Karen would have told me how much she was bothered by my absence. I would have taken a different job that had more allowance for working at home often.]
Wednesday, March 6, 2013 at 1:40pm EST
I take 25mg of Topamax once a day in the evening.
Wednesday, March 6, 2013 at 9:46pm EST
I always have some degree of depression. My depression is worse when my headache is worse. I get so depressed spending so much time alone but who wants to spend time with someone that has to moderate their activities according to how they feel when how I feel can change every hour? I cry. I get out of the house as much as can to fight isolation. I try to use distraction to keep myself busy. Sometimes that works, sometimes it doesn’t.
[Learning anything she could learn. I really miss that. ]
Thursday, March 7, 2013 at 3:21pm EST
… I have tons of out of pocket medical expenses myself. Some websites that help me find money in our budget to redirect toward medical bills are http://www.stretcher.com and http://www.savingadvice.com.
[Karen’s passion was to be frugal.]
Friday, March 8, 2013 at 3:59pm EST
I think leaks are probably not all that rare. They are misdiagnosed as chronic daily headache, transformed migraines, etc. Does Diamox give me a frontal headache? That is a very good question. When I went to see Dr. Gray a few weeks ago was on 3000mg of Diamox. I was sure my pressure was high because all the pain was in front of my ears. In actuality, I was in LP. The doctors around here don’t like to prescribe Ativan, Xanax, or drugs like that. Sometimes I think it would be nice to have them through the rough times realizing that we can become physically dependent on those drugs. I know what you mean about not liking to take all the drugs. Do you go to church? I have not went for years. [Hurt too much to sit and not move.] I have my usual level of depression today. It never goes away. It is always there to one degree or another.
Saturday, March 9, 2013
I dont think that anyone even realizes the extent of our illness until they have experienced it so they really cant comprehend the pain that we go through I know that I would never want them to go through this so I am okay with them being ignorant and not as supportive as I would like them to be than make them go through this and actually be capable of understanding I dont know if that really makes sense but I think it does!?!
www.selfgrowth.com/articles/The_Practicalities_of_Coping_with_A_Suicide.html
http://muslaw.blogspot.com/2013/01/pennsylvania-real-estate-seller.html
[I do not know why she wrote those links in this message? Was she thinking ahead to me selling the house someday? This is typical of Karen’s thought process, detailed and methodical.]
Sunday, March 10, 2013 at 10:51am EDT
I always feel kind of low. The degree varies. I take Amitrypiline (spelling) for depression. I don’t remember if I tried Celexa. I know that I tried several. I feel lethargic. Usually, I can make myself do things, but with the patches, I don’t know if I should. My husband is home several evenings during the week (not all because he goes to his Mom’s house, too, and the weekends.) [Actually going to Mom’s on the weekend was rather rare?] I have not tried Ativan. My ICP goes higher when I stress. Right now I think that I have a slow leak. … If I lost my dog, I would be out in my pj’s at any time of the night looking for him. We love our pets
Monday, March 11, 2013 at 9:06am EDT
I have one dog. I used to have two, but one died a couple years ago of chronic kidney failure. I could change my mind, but right now I am hesitant to get another one when something happens to Garth. I have felt this way since I began developing chronic tendon issues a few years ago. He is an older mixed breed.
Tuesday, March 12, 2013 at 11:23am EDT
Dr. Gray had me completely stop Topamax. I hope this helps, cause this feels like I blew a patch and am in LP.
Wednesday, March 13, 2013 at 1:19pm EDT
My head feels like a low pressure headache. I talked with the doctor on Monday. I will wait a few more days to make sure the medication is completely out of my system before contacting her again.
[This is why I did not want her taking Diamox later.]
Friday, March 15, 2013 at 7:07pm EDT
I don’t think that I feel fluctuations in the weather. I am always depressed, but when my head feels like this, as it has the past several days, I am even more depressed and crying. My pain will go away within about an hour of lying down. In the morning, before I get up I don’t hurt until I move. The head pain and neck pain will start when I move my arms or legs. That I don’t get because I am horizontal. Is it HP or LP because when I am up, the pain is mostly in the back of my head where it was before I was patched. Diamox and Topamax do not make a difference.
Friday, March 15, 2013 at 7:10pm EDT
I had another massage yesterday. When I was lying face down, she was working on my hips, and that increased my headache. It was the same pain that I have in the morning when I moved before I get out of bed.
Friday, March 15, 2013 at 7:17pm EDT
For all 23 years, my headache went away within a minute or two of lying down. Moving while lying down did not cause head or neck pain. That changed since the patches so I am confused.
Saturday, March 16, 2013 at 5:55pm EDT
I would love to lay down and chat or watch TV with you. Not having anyone around me that understands makes it all but impossible to make friends. You can move to Northwestern PA. When I first developed symptoms, I was still living with my parents. They thought that since the medical tests were all normal that I was making this up. So I could not look for answers. I began looking for answers just after we were married. I never came up with much until I began looking for orthostatic headaches last summer. I didn’t think that HP made me any more anxious than I usually am. Sometimes I get so anxious, almost like I am having a panic attack but this happened before I was patched, too.
Saturday, March 16, 2013 at 9:37pm EDT
I would have tried Diamox even if you hadn’t mentioned it. That is the only way to know whether it is high or low pressure. I theorize that the patches she did in October are holding, and the patch she did over the hole last month blew. I say that because when I went down to NC last month, at my first lumbar puncture, my pressure was 11 and 1/2 while I was on 3000mg of Diamox without the extra hole. At the second lumbar puncture with no Diamox and the extra hole, my pressure was 16 and 1/2 which felt low. She patched the second hole. I rested at the hotel the following day. We came home the next day. I could not rest like I was able to in October. Since that hole and patch would have been the weak area, I believe that it blew. Am I making sense? I love my family, too. If they had a sudden change of behavior, I would find it suspicious, like they wanted something. The change of behavior would have to be long-term, before I fully trusted them. I try to analyze my own behavior in situations with questions like, “What did I do to contribute to the other person doing or saying that?” I feel what sours my relationships are things that I have no control over, like our leaks, and in my case, my issues with verbal conversations and my very stiff posture from my pelvic obliquities. I walk differently than most people, and I feel judged because of that. I read Dale Carnegie’s, “How to Win Friends and Influence People.” I incorporate those people skills as best as I can with my limitations. I’d love to have deep meaningful relationships with people. I am the kind of person that likes to talk about things, usually more so in writing because of my own personal issues. I feel like I am in LP.
Monday, March 18, 2013 at 9:15am EDT
I am pretty sure that I sprang another leak from my symptoms. Pretend that your dura (the covering of your spinal cord and brain) is a water filled balloon that was patched because it was leaking. You would not want to bend or twist the balloon until the patch had set. That’s the same thing that happens with your dura after a patch. Rebound high pressure is another added stress to the patch. [Can someone make a drawing/picture of this?]
Monday, March 18, 2013 at 1:00pm EDT
I am sure that this illness is hard on families, especially those that live with us. Some days, I have no problem believing in myself and that this illness is real. Most days, I struggle with believing that as true.
Tuesday, March 19, 2013 at 6:11pm EDT
I found this on a website. [Which one??] It says it so accurately. Lastly, I want to point out that I DO UNDERSTAND why people don’t want to believe the claims of those of us who live with Chronic Pain (though such unbelief has caused me more suffering even than the terrible pain of my disease).
I actually believe it is a natural protective mechanism - I’ve experienced it myself. You look at someone whose life has gone to hell in a hand-basket, who has lost everything they cherished, whose life NEVER gets any better, only worse, and you NEED to believe that they had a hand in bringing this on themselves, or in perpetuating it, or you need to believe they are exaggerating, maybe even making it up. Because if all of that misery can befall a totally innocent person.… well, it would stand to reason then that …. that it could happen to ME!
THAT is the thought that is intolerable. THAT is a possibility that most people cannot admit, that they cannot allow to be true, for it would shatter the illusion that life is predictable, that one can count on being rewarded for one’s labors and one’s vigilance.
For those whose lives are comfortable, who have been richly blessed, that illusion probably is what keeps them going, gets them out of bed in the morning.
I have to admit, it was lovely while it lasted.
Wednesday, March 20, 2013 at 10:14am EDT
I hope that the waiting list to see Dr. Gray next month is not so long that I have to wait until May for an appointment. I eat salt. I am not sure about drinking salt water. I am curious, do you know how ice packs at the site of leaks work? I have some Tramodol. Interesting that it increases ICP. I will have to try that later today. … I haven’t had my eyes feel like they were going to pop out of my head since she put the hole in my dura in December. I needed that hole because my ICP was making me go blind among other symptoms. When my pressure was high, I took 50mg of HZTC in the morning and another 50 at night.
Friday, March 22, 2013 at 2:04pm EDT
Your story with CSF leaks, disability … your neurologist is just heart breaking! I can’t imagine what you are going through.
I too, wish that certain doctors and the decision makers and the insurance company decision makers would suffer a CSF leak for a month.
Maybe they would have compassion after that!
I don’t mind listening to your rants, I ‘get it’.
Disability insurance that you get through work is harder to fight denials because of the Employee Retirement and Income Security Act
[ERISA. They always fight you to pay any claim].
Without an attorney the chances of overturning the denial are practically zero. The financial saga has no end in sight with mounting medical bills and being unable to work.
Lost income from not being able to work, medical bills, disability insurance company wanting their money back, loosing friends, and losing our independence, no one chooses this life, yet many ‘normal’ people treat us like this is our lifestyle choice.
Most ‘healthy’ people do not believe our stories.
Friday, March 22, 2013 at 4:03pm EDT
Insurance company doctors are not ‘independent’ when they examine a claimant. Their loyalty lies with their employer…
Saturday, March 23, 2013 at 6:44am EDT
I will reply more later, but found this article on positive thinking and chronic illness.
Thursday, March 28, 2013 at 4:44pm EDT
I went to the Y this week. I missed you. How are things with you?
I go back to North Carolina next week because I blew one or more or the patches she did that prevent spinal fluid from leaking. I can tell from my intracranial hypotension symptoms. I was like this prior to going to the Y this week.
After I come back from North Carolina, it will be many months again before I back to the Y. I cannot remember if I told you why I had the restrictions of no bending, twisting or lifting after the patches.
Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That’s the same thing with your dura.
The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unloading or loading the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching.
Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.
Thursday, March 28, 2013 at 5:52pm EDT
Aww, I am saddened that you have been sick. I too, hope that you can make it back to all your classes next month.
Not bending is easier said than done. That includes normal activities of daily living. Vacuuming, laundry, loading and unloading the dishwasher, grocery shopping, and many more.
Friday, March 29, 2013 at 5:40pm EDT
I have an appointment for April 2 to see Dr. Gray again.
Tendonitis is flaring up on top of my left foot. I know the names of the involved tendons, but can’t think of them off hand. The custom Richie Braces do nothing for tendonitis in this location.
Saturday, March 30, 2013 at 9:30pm EDT
I am getting patched again by Dr. Gray on April 2nd.
Saturday, March 30, 2013 at 9:32pm EDT
[When do you think you started leaking?] About 10 days after the last patch.
Saturday, March 30, 2013 at 9:39pm EDT
Last September didn’t work. I was back into LP within 24-48 hours. She patched the wrong area that time, my thoracic spine.
October she patched my lower back. Boy did I get HP. I maxed out on Diamox and HTCZ and was still going blind among other symptoms. In December, she put in a hole. That helped HP but I still needed Diamox. In February, I thought that I had HP again, she put in another hole. Big mistake.
[Karen was sure she had high pressure and kept taking more Diamox when she actually had low pressure.]
My face felt like it was imploding that night. A few days later, she patched that hole. I felt like I began leaking 10 days later. My unproven theory is that the new patch in February would have been weaker than the patches from October, so maybe that is the only patch that blew. In February, she patched only the hole she put in a few days earlier.
Saturday, March 30, 2013 at 9:50pm EDT
I have a long-standing problem with depression. It’s not your typical depression. I feel better, mentally if I am up and about moving around or exercising. The depression is still there, just not so bad. After getting patched, I have to rest, not moving depresses me. I know to keep the long-range in mind, but I still get depressed. I think it may be because I have no local support other than my husband. I don’t have local friends either, so I sit at home alone after patches. No one around here believes me…
Sunday, March 31, 2013 at 11:40am EDT
… you get more sunshine to help with your depression, than we do here. I do not think sunshine has an effect on my depression. … I can rest and exercise as much as I want without someone thinking that I make myself sick for attention, or some other bizarre idea. … Pets give us unconditional love. I have a dog. I love my dog dearly. I will be heartbroken when he dies. He is an older mixed breed brown dog, named Garth. You can see him in some of my pictures here in FB. The Australian Shepards are no longer with me. They passed away. …
I’d love to get another dog when Garth dies, but I am not sure if I will. The extra house cleaning a dog requires is getting to be too much. Other than my husband, I have no support from anyone. After a blood patch when I have to restrict bending, lifting and twisting, I cannot describe how hard life is without help! I feel guilty that my husband comes home and does things after working a 12 hour day.
Monday, April 1, 2013 at 8:08pm EDT
As for coming to NC? I blew one or more of the patches. I know that because I am back in low intracranial pressure. That’s not too unexpected. I have been sick for 23 years, that too will make recovery take longer. She proved that this is what caused the low pressure headache and other symptoms. I cannot remember if I told you why I had the restrictions of no bending, twisting or lifting after the patches. Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That’s the same thing with your dura. The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unload or load the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching. Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.
Tuesday, April 2, 2013 at 1:27pm EDT
The doctor checked my pressure with a lumbar puncture. My intracranial pressure was too low, which confirmed my symptoms. She added artificial cerebral spinal fluid. The increased pressure relieved the symptoms immediately. She did one glue and blood patch in the area that is most likely leaking. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places that are leaking. She doesn’t want to patch too many places at one time because the rebound high pressure will be uncontrollable.
Tuesday, April 2, 2013 at 3:03pm EDT
My pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of Elliot B. The increased pressure relieved the symptoms immediately. She did one glue and blood patch where I had the hole and subsequent blood patch in February. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places. She doesn’t want to patch too many places at one time because the rebound high pressure will be uncontrollable.
Friday, April 5, 2013 at 3:01pm EDT
On Tuesday, my pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of artificial CSF and my headache instantly went away. She did one glue and blood patch where she put the 20 gauge hole and subsequent blood patch in February. The LP headache came back, so she did more blood and glue patches today. She did not check my pressure. How are things with you?
Friday, April 5, 2013 at 3:41pm EDT
It doesn’t seem to ever end. I have been dealing with this for 23 years.
Friday, April 5, 2013 at 3:47pm EDT
How am I able to function? I push myself. I try to ignore it. I make myself exercise. Mentally, I love to exercise. We will stick around until at least Monday. That way, we will know whether I need to see her again on Monday.
Friday, April 5, 2013 at 4:13pm EDT
As for exercise, I found that too much or too little make me worse. I still have a lot of pain when I exercise, but that is the lesser of the evils. Thanks for keeping me in your prayers.
Saturday, April 6, 2013 at 1:42pm EDT
The doctor patched my dura (the covering of your brain and spinal cord) in more places yesterday. So far, that helps my low intracranial pressure symptoms, as it has in the past until I spring new leaks. Too high intracranial pressure symptoms take a few days to kick in, so they have not begun. It’s possible that I have an inherent weakness in my dura, that is responsible for chronic leaks. If you ever had myelogram and got up too soon, you know how severe and disabling a low intracranial headache is. Too low of intracranial pressure (intracranial hypotension), and too high of intracranial pressure (intracranial hypertension) have different, but equally debilitating symptoms.
[Sometimes the Hypo and Hyper symptoms are hard to tell apart.]
Saturday, April 6, 2013 at 3:58pm EDT
I am sending this to you because CSF leaks (that I keep coming to Duke for) cause pseudo-chiari with the same symptoms as chiari. Chiari is not always benign.
Sunday, April 7, 2013 at 9:05am EDT
Dr. Gray used glue this time. During the previous trips, she used blood. I have a headache today. My period began a couple days ago. I am not sure if this is a leaking headache, or a hormonal headache. My period causes headaches too. I took Zomig a little bit ago. That usually works for my hormonal headache and does nothing for my leaking headache. It takes a few hours to work. I should know in a few hours what kind of headache this is.
Sunday, April 7, 2013 at 4:10pm EDT
I am still in NC. She did one blood and glue patch Tuesday. She added artificial cerebral spinal fluid. The extra fluid takes away the pain instantly, like magic. She did not patch all the leak sites because we are trying to lessen the rebound high CSF pressure. By Thursday, I was back to the low pressure CSF state. Friday, she patched a few more places. Saturday, I was better. Today, things are not so great. My period started on Thursday, so I am not sure what symptoms come from my everyday problem, verses my hormones. If I feel that I need it, she will try patching more holes in my dura. The dura is the water tight covering of your brain and spinal cord that holds the cerebral spinal fluid. I think that I am going to trade in my dura for a new one.
Monday, April 8, 2013 at 9:32am EDT
Dr. Gray did one blood and glue patch and added Elliot B last Tuesday. LP came back by Thursday. Friday she did more patches, but did not do an lumbar puncture. Saturday, I had no headache. Yesterday it came back. Diamox makes it worse.
Monday, April 8, 2013 at 5:39pm EDT
My sister told me that someone she works with is having Chiari surgery at the end of the month. I tried to educate her that Chiari might be this persons problem BUT CSF leaks cause a pseudo-chiari. In this case the imaging studies will show chiari but unless the radiologist reading the films and/or doctor believe in CSF leaks, chiari surgery many not help this person. She didn’t seem convinced. Oh well, at least I tried.
Tuesday, April 9, 2013 at 8:07pm EDT
My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.
Tuesday, April 9, 2013 at 9:00pm EDT
I saw the doctor again today here at Duke because my symptoms increased. I talk about my headache the most because spinal headaches are horrendous pain wise, but that is not the only symptom. My pressure today the lowest it has ever been. She patched areas today that she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue today to stick. She said that may happen. She said the one sneeze I had on Saturday night could have blown some patches. Sneezes are known to cause leaks if your dura is weak. I did not ask her, but another possibility is a cyst on my dura that did not show up on my initial myelogram burst. That’s what recently happened to someone with my problem on Facebook. If my symptoms come back within a day or two, I will pursue the burst cyst idea with her. I have cysts on my dura. Burst cysts usually require surgery that is not done at Duke. The type of surgery that is best done in Los Angeles, CA. She gave me 8 patches. I had more needles in my spine because each patch required 2-3 injections of lidocaine in 2 or three places. I did it without sedation because the pain from the headaches is not nearly as bad as the pain from all those needles.
Tuesday, April 9, 2013 at 9:24pm EDT
Yes, my hubby works from here. Thank you for praying for me everyday. I do the same for you. The daily headaches have been this severe for over 23 years. This is why I don’t have close friends… That pain affects every part of my life, and daily functioning. I don’t talk about it too much with others because they believe that I make it up for attention, am a complainer, it’s mental, or I am lazy. The research into this condition has just taken off within the last decade so it is not well known and does not get the same respect as conditions that have been around for decades. The doctor can add artificial cerebral spinal fluid, and my headache instantly goes away, like magic for about 24 hours. That’s how long it takes for the fluid to leak out.
Wednesday, April 10, 2013 at 7:52am EDT
I saw Dr. Gray yesterday. My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.
Wednesday, April 10, 2013 at 11:43am EDT
I assume it was my single sneeze that popped a leak because I was feeling better until that happened.
Wednesday, April 10, 2013 at 11:44am EDT
For me, lack of movement is just as bad as too much movement. Both cause pain.
Wednesday, April 10, 2013 at 11:46am EDT
For now, we plan to stay in NC until Friday morning, unless I start leaking again.
Wednesday, April 10, 2013 at 4:39pm EDT
… I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big.
Wednesday, April 10, 2013 at 5:09pm EDT
I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big. She did not say any of this, but it is my fear.
Thursday, April 11, 2013 at 11:52am EDT
We will come home tomorrow. I spoke with Dr. Gray. She wants to rule out POTS with a cardiologist at home. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt. Exercise intolerance is common. She is not convinced that it is hard for me not to exercise. I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. … Yes, it is heart breaking to read the boards…
Thursday, April 11, 2013 at 12:44pm EDT
My massage therapist agrees that I do not have POTS. She sees me get up off her table and roll over. She has a masters and two bachelors degrees all in health related fields so she knows what she is talking about.
Thursday, April 11, 2013 at 1:06pm EDT
My headache is starting to come back. Dr Gray is not convinced that it is hard for me NOT to exercise.
[Karen *LOVED* to exercise, she did it almost to the exclusion of everything else, until she could not do it and not blow patches.]
I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. I don’t know what to look for in a cardiologist.
[POTS tests were never done.]
Thursday, April 11, 2013 at 1:14pm EDT
Most, if not all, doctors in my area have a several month waiting list. I know that I do not have POTS. I want to get tested as quickly as possible, so we can get back to finding the leak. I believe that I need a new myelogram.
Thursday, April 11, 2013 at 2:07pm EDT
I am frustrated. I KNOW that I do not have POTS. My internet research says a tilt table test is the standard for diagnosing POTS. Putting weight on my ankles 30-45 minutes for the test will flare up my tendonitis.
Thursday, April 11, 2013 at 5:13pm EDT
Who ordered your POTS testing? My headache instantaneously went away when she added Elliot B…
Thursday, April 11, 2013 at 9:17pm EDT
Both my opening pressures this trip were less than my opening pressure the first time I saw her. Apparently I am not leaking like I was the first time… I feel trapped between damaging my ankles further, and getting tested for POTS. I KNOW this is a leak. Elliot B relieved my headache for a day both times she gave it to me this trip. I am frustrated and trapped.
[POTS testing required that she damage her ankles due to her tendonitis issues.]
Thursday, April 11, 2013 at 10:43pm EDT
… I am not resistant to getting tested for POTS. I am resistant to getting any test that pushes my ankle tendons further than their limit.
… My headache is back just as bad now as it ever was. It came back a day or two after each patching this trip. This is why I believe that I have new leaks not on the myelogram from September. I just don’t know what to do.
Saturday, April 13, 2013 at 1:36pm EDT
I am ‘chronicheadache’ on http://www.csfleaks.org. I rarely post there because it is searchable by Google.
[Sadly, http://www.csfleaks.org shutdown in early 2016, lots of good information was lost. It has been replaced with: http://www.inspire.com/groups/spinal-csf-leak-foundation.]
Saturday, April 13, 2013 at 9:39pm EDT
My hubby called Dr. Gray today. She is not sure, but she thinks it’s possible that some of the fibrin got into my CSF and irritated the lining of my brain. She said that happened to one other patient. She called in a medro dose pack prescription. That’s where you take a bunch of steriods in the beginning and taper down over 6 days. Couldn’t she see that on the CT as they injected? I am not convinced that that is the problem, but we will see.
Sunday, April 14, 2013 at 7:25pm EDT
Both doctors have successes and failures. I wish there was not such a divide on the group between doctors. I won’t participate in those threads. We are all in this to get better and provide support, regardless of what doctor we chose.
Tuesday, April 16, 2013 at 3:01pm EDT
My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. My head feels the best if lie down with it being the lowest part of my body. I am not taking Diamox. … Diamox makes me worse. Both times she added Elliot B this month, I had complete headache relief for about a day.
Tuesday, April 16, 2013 at 3:10pm EDT
I hear your indecision when it comes to going to L.A. What to do? I wish there was an easy answer. It’s hard to spend all that money and not get any answers, or get worse. I am working on getting my stuff together for Dr. S. I thought that I had the Duke myelogram, but it looks like I have only the CT needle placement disks.
[We did have them. Duke seems to label the disks strangely. Make sure you always request a copy of your imaging and all of your reports. Also keep written notes, if you can, as things sometimes don’t make the records. I’ll be putting Karen’s images on her website so people can study them and hopefully learn something, not sure what?]
Thursday, April 18, 2013 at 9:44pm EDT
Nothing new with Mom today. I feel awful. I can feel my brain resting on the nerves to my eyes. My face and scalp burn. My head is imploding. I am nauseated, and many more symptoms. My Mom has underlying advanced pulmonary fibrosis which is terminal. It’s not the pulmonary fibrosis that kills her, but the complication of pneumonia. Every time she gets pneumonia, we think of that. Thanks for telling me that I should not be upset with myself for not being there. I feel so guilty over not being there … Since coming back from Duke, I have crying spells everyday. My pressure is very low because I am having eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. I don’t feel like this when my pressure is slightly low. When it is slightly low I have a very bad headache in the back of my head near my neck. Right now the pain is all over my head. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don’t know how to manage myself. I have no where to go for the eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. … I think she agrees to the large volume blood patch because I am not going away. I can’t. I am too sick. I have crying episodes everyday since coming home because the pain is SO bad! Enough about me.
Thursday, April 18, 2013 at 9:51pm EDT
I am doing terrible. I don’t have much upright time. If I try to stay up very long, I would collapse. Until, I lied down for several hours, my vision would be awful, and I would be dizzy, and the nausea would increase. My head feels like it is imploding. Each time Dr. Gray added Elliot B this last trip these symptoms went away for about a day. Each time she measured my opening pressure this month, it was less than it was the first time that I saw her last fall. … I know my pressure is just as, if not lower than it was. Diamox makes me much worse. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don’t know how to manage myself.
Friday, April 19, 2013 6:21am EDT
From: Karen Paddock
To: Dr Gray
Subject: horrific pain
Headache and other symptoms are horrific. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. My pressure on the 9th, was lower than my pressure last fall when I first saw you.
Thanks,
Karen
From: Dr Gray
To: Karen Paddock
Sent: Fri, 19 Apr 2013 14:25:41 -0000 (UTC)
Subject: RE: horrific pain
12:30 Tues ..I put you on…
Friday, April 19, 2013 at 8:10am EDT
We have such important decisions to make, and don’t know what right decision is. No guarantees that anything will help. We are scared. I am thinking about going to Dr. S. too. Some of his patients with crappy duras go back multiple times because they keep springing new leaks. … My headache and other symptoms are horrific. My head feels like it is imploding. The pain is horrendous. My eyes are very light sensitive. Every time I move my head, I am dizzy and my eyes go funny, and my brain feel like it is hitting the inside of my skull. My vision is blurry. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. …
Friday, April 19, 2013 at 9:48pm EDT
I am home, but leaving again Monday. Each time the doctor at Duke added artificial cerebral spinal fluid earlier this month, the symptoms in the next paragraph went away for about a day. Each time she measured my opening pressure, it was less than it was the first time that I saw her last fall. She patched everything that looked suspicious from my September myelogram with over 3 rounds of patching earlier this month. She didn’t patch everything all at once because the rebound too high intracranial pressure gets too bad.
Well, no high pressure developed as it should have. I went right back to low pressure and the associated symptoms. I have many symptoms of too LOW of intracranial pressure. I am home, but leaving again Monday. My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms.
Friday, April 19, 2013 at 9:54pm EDT
Because my symptoms are so horrendous, Dr. Gray is working me in on Tuesday. I am still considering Cedars.
Friday, April 19, 2013 at 10:12pm EDT
I am not sure what I would have done if I couldn’t have gotten back to Duke. Like you, I daily tolerate pain that would make others pass out…we have no choice. But after this last trip, the pain got so much worse. Pain meds don’t help.
Saturday, April 20, 2013 at 7:37pm EDT
I have about reached my limit with the intensity of pain that I can tolerate.
Earlier this month, she did three rounds of patching in my spine. The largest round was 8 patches. Each patch consists of 4-5 injections (3-4 injections of a numbing agent, and 1 blood and glue patch.
I go through the procedures without sedation because the pain from that many needles in my spine is not as bad as the pain that I feel daily.
So when I complain of pain as I have recently, it is really bad.
My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms. These symptoms are an every day thing now.
The doctor did a couple lumbar punctures earlier this month. Both opening pressures were lower than the first time I saw her last fall. Both times, artificial cerebral spine fluid infusions temporarily relieved symptoms for about a day.
The low opening pressures and artificial CSF infusions are evidence that I have continued leaks.
Sunday, April 21, 2013 at 9:59am EDT
The thing with an abdominal binder is if worn too long, your core muscles will become weaker.
Sunday, April 21, 2013 at 7:20pm EDT
I am going to Durham tomorrow. My pain is bad. The abdominal binder helps, but does not relieve it. Another reason that I feel down regularly is lack of socializing with others. I don’t mean on Facebook but in person. I have only one physical friend. It seems like when I talk with others, that I am the one to initiate contact. They don’t. Maybe I say or do things that they interpret in a way I do not intend? I wish I knew. I read the Dale Carnegie book, “How to Win Friends and Influence People.” My condition limits what I can do to get out and socialize. It’s lonely. I know you understand. I don’t get help from others while recovering from patches, either. Oh well, I don’t have to return the favor when they don’t do anything to help.
Tuesday, April 23, 2013 at 7:58pm EDT
… the doctor did a pressure check. My pressure was 10.5. The first time I saw her it was 14.5. … She did a new myelogram. She wasn’t talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. The PA did 9 patches. I may go back later this week. I am supposed to rest in bed for 5 days. When I am home, I can’t rest like that because I don’t have support.
Wednesday, April 24, 2013 at 8:57am EDT
… The pressure check confirmed [I was leaking]. My pressure was 10 1/2. The first time I saw her it was 14 1/2. She did a new myelogram. She wasn’t talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. Jeff did 9 patches. Dr. Gray told us not to leave town in case I need to come back. … I am supposed to rest in bed for 5 days.
Wednesday, April 24, 2013 at 9:51am EDT
When I heard her say that she saw something she had not seen on previous myelograms, I did not say it but thought to myself I knew that I was leaking because I know my body.
Wednesday, April 24, 2013 at 3:10pm EDT
Developing spontaneous leaks since last September concerns me. I usually don’t complain about the pain being so bad, but it was horrendous. In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head. I’ll know more tomorrow and the next day how I feel, since she pumped up me up with Elliot B. My back hurts a lot from the patches, but I expect that. Bob has not called a chiropractor. He said his back currently doesn’t hurt as bad as it did.
Wednesday, April 24, 2013 at 9:51pm EDT
My intracranial pressure was one of the lowest readings ever yesterday…objective evidence of more leaking.
She did a new myelogram, and found new leaks. My last myelogram was September. She told us not to leave town for a few days I need to come back. Developing new spontaneous leaks since September concerns me.
I usually don’t complain about the pain being so bad, but it was horrendous.
In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head.
I’ll know more tomorrow and the next day how I feel, since she pumped up me up with artificial cerebral spinal fluid. My back hurts a lot from the patches, but I expect that.
Friday, April 26, 2013 at 11:32pm EDT
I am back in LP…It’s not as bad as it was before I saw Dr. Gray this time. Dr. Gray is going to do more patching on Tuesday. Oh well, at least my pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram [In September], but I have new spontaneous leaks.
[I’m not sure sneezing counts as spontaneous?]
Saturday, April 27, 2013 at 11:58am EDT
Listening to Mom talk about her death, and what she wants is very hard. I do not to discourage her from talking about it. I don’t tell her that it’s not that bad. I don’t want her to feel that I minimize her feelings. She talks about how no one knows how much she suffers. These conversations would be difficult if I was healthy. Things are all the more harder, when I have the same emotions with my own long-standing illness.
Saturday, April 27, 2013 at 12:37pm EDT
I feel like giving up. Dr. Gray has not found the right area to patch. Things keep happening with Mom. Life is depressing. The illness is not well known, so we get no respect from others. I have a hard time dealing with that, especially now when I am *expected* to do things. I don’t talk about my problem all the time because no one wants to hear that. Chronic CSF leaks just get to be too much for me. You said it better than I could when you said life circumstances which we can’t take care of business because of our limitations are really hard.
Saturday, April 27, 2013 at 1:42pm EDT
I am in LP, but I don’t think that it is as bad as before. Dr. Gray is going to do more patching on Tuesday. I don’t think that I am blowing them. I think she just didn’t find the right location. My pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram, but I have new spontaneous leaks. …
Saturday, April 27, 2013 at 1:56pm EDT
Making the decision what to do treatment wise is difficult. I, like you, sometimes procrastinate thinking if I wait the problem will go away on its own. If this next round of patching doesn’t work, I will contact Dr. S. If I went to L. A., it would be nice if I found someone on the forum to share a hotel room. Rooms usually hold 3-4 people so my hubby and I could share with someone. They seemed surprised when my pressure came back low. … I’ll see what the difference is when the myelogram results are on my Duke Healthview online account.
Saturday, April 27, 2013 at 1:57pm EDT
You are SO right when you say that we know our own body and have to be our own advocate!
[YES! Study and learn all you can so that you are an informed patient.]
Saturday, April 27, 2013 at 2:44pm EDT
The doctor is going to patch more areas Tuesday. If she can’t get this under control soon, I am going to see a doctor in Los Angeles, CA. He is doing research, too.
Sunday, April 28, 2013 at 4:02pm EDT
Thanks for praying hard for me about Tuesday.
This will be the 5th time this month that I am patched. I began seeing Dr. Gray in September. She patched me in October and I went into HP.
HP stopped me in my tracks from doing anything. LP does too, but in a different way.
LP and HP requires me to rest between activities. Both affect my ability to do activities of daily living. I try to keep myself in shape physically, but it’s not easy. My husband is my only support…
Sunday, April 28, 2013 at 4:07pm EDT
I don’t know about doing a whole dura transplant, but the Dr. in LA specializes in replacing sections of dura.
Monday, April 29, 2013 at 6:13pm EDT
I am back in LP. My head is imploding, dizziness, the pain is out of this world. I hope that Dr. Gray does not give up on me. I am worried. I see her tomorrow at 1pm.
Tuesday, April 30, 2013 at 2:43pm EDT
I saw Dr. Gray today. She did nine patches. She injected a combined total of 30cc of blood and glue into my epidural space to prop up my pressure. My back pain is pretty bad at the moment, but my head feels great. I took pain medication a little bit ago for my back. She didn’t think that I was leaking. She mentioned Dr. Schievink’s dural reduction surgery.
Tuesday, April 30, 2013 at 5:10pm EDT
… We’ll see what these new patches do before deciding what to do next. In December when I was here for HP, she said that I had a stretchy dura. Tuesday my pressure 10 and 1/2 was lower than my pressure in February. In February, I was taking 3000mg Diamox and my pressure was 11 1/2. I am very scared. My headaches now are worse than they were when I began seeing her last Fall. Last September my pressure was 14 1/2. Did the few months that I had HP stretch my dura. I want to baby the patches that I got today, but I don’t know how to do that with Mom. The stress of my Mom’s latest episode didn’t cause my headaches to get worse. They were worse before that.
[Karen’s mother is very ill, and still is, down to 87 pounds. Karen was always worried that her mother would die when we were out of town for Karen’s treatments. This added a lot to Karen’s stress level. Worries that, in the end, were wasted because her mother is still here and Karen is not. Shows how pointless it is to worry about the future!!]
Tuesday, April 30, 2013 at 5:14pm EDT
I was on no Diamox for my pressure of 10 and 1/2 Tuesday. Unlike February when I was on 3000mg of Diamox and my pressure was 11 and 1/2.
Tuesday, April 30, 2013 at 5:21pm EDT
I do not have HP now. Thanks for asking about my Mom. She is doing the same as yesterday. We will probably go home on Thursday or Friday. Bob is with me. He brings his work with him.
Tuesday, April 30, 2013 at 8:37pm EDT
She thinks that my dura stretches like latex, whereas other people have a dura like mylar that does not stretch. Someone can have a stretchy dura, be unable to make enough CSF to fill it, NOT be leaking, and have a low pressure headache when upright. When said person is lying down, they would have no headache, but when they are upright all the CSF would flow out of their head and into their spine. Giving the person a low pressure headache even though they are not leaking. Back in December when I had a problem with high pressure causing blindness and other weird symptoms she told me that I had a volume problem rather than a pressure problem. My brain had no problem filling my stretchy dura then. My pressure was 20 in December. My pressure was 10.5 this trip. How come my body now has trouble filling my stretchy dura, if I am not leaking. I don’t get it. I am very scared!
[Sometime around this time frame Karen told me that “I thought I’d be healthy by now and on the way to being healed so we’d have a life.”]
Tuesday, April 30, 2013 at 9:28pm EDT
I have a high pain tolerance and usually push through, but not with this pain. I took pain medicine. I don’t know what she saw different. I didn’t ask because I wanted the new myelogram… I’ll wait until the record is online and read it. It is confusing that my pressure is lower now without Diamox. That’s why I think that I was leaking.
[Understand that what Karen could tolerate for pain would leave most of the population of the world as withering, screaming, bawling balls of flesh flopping around on the floor. ]
Tuesday, April 30, 2013 at 10:10pm EDT
Dr. Gray didn’t do a large volume patch, like she said she would. She did targeted patching. A student did 9 patches. The total volume of blood and glue was 30cc. This total volume would be like adding 30cc of Elliot B. I didn’t ask, but I assume she could see my stretchy dura on the myelogram. I think Dr. S’s new procedure where he inserts a catheter to put pressure on the dura sounds less invasive than dura reduction surgery. I remember reading on the forum that Dr. S discussed it with them. She didn’t do an OP this time, but know it was low. I was fine without getting another hole poked in my dura. I plan to lay flat all day tomorrow. We might go home on Thursday. I’ll recline the seat, although it doesn’t lie flat.
Wednesday, May 1, 2013 at 9:31am EDT
I am definitely in HP now. I want to take a little Diamox, but Bob said no until I talk with her. I sent her an email this morning, and just left a phone message because it’s getting worse.
[I did not want her taking it because of how she could not tell them apart in February, and taking it could have complicated any testing Dr. Gray might want to do. In the past, we had to wait days for the Diamox to get out of her system, see above. In the end, I was wrong and Dr. Gray told her to take Diamox.]
Wednesday, May 1, 2013 at 9:44am EDT
I ate this morning, but I am starting to feel like throwing up. HP makes me fill like throwing up. LP does not. When I pack my medication, Bob grumbles that I take so much.
[Poorly arranged in several plastic bags. I like things to be organized so they can be found in an emergency.]
I remind him that I take only three medications. I bring the rest because she may prescribe them again. Why pay for another prescription when I already have it.
Wednesday, May 1, 2013 at 10:10am EDT
When I had a misdiagnosis of rheumatoid arthritis, I took 5mg of prednisone daily for 5-6 years. It made me gain weight.
[Steroids thin skin and other connective tissues when used chronically. Did this contribute to Karen’s “Crappy Dura”?]
Wednesday, May 1, 2013 at 11:54am EDT
She just replied to my email and said to try Diamox. I know this is HP because LP never made me nauseous in the past, but HP does. I had to take Zofran earlier today. Every other time this month she patched me, I felt good for about 24-48 hours than went back to LP, a second reason that I believe this is HP.
Wednesday, May 1, 2013 at 2:27pm EDT
… I feel that they are both doctors researching this condition and want to help patients. I feel terrible, and just threw up. I sent Dr. Gray a message. She is probably sick of hearing from me.
Wednesday, May 1, 2013 at 3:42pm EDT
Zofran did not help. I have another anti-nausea medication here that starts with a p, but haven’t tried it. It didn’t work in the past either. I took a 250 Diamox almost an hour ago and don’t feel much different. I am tempted to do what I did before, take one 250 every hour until I feel better, but she did not say to do that.
Wednesday, May 1, 2013 at 5:17pm EDT
The last time that I had HP, I felt better up for an hour or two, then I felt worse. Propping myself up on pillows helped. Not so this time, which I don’t understand. This time, I feel bad upright and lying flat. So far, I’ve thrown up twice. I am trying to be real careful throwing up to keep from blowing a patch. I would try a cold wash cloth, but housekeeping took our towels this morning, and hasn’t brought them back. I don’t know any pressure points. Are pressure points in the same place for everyone? I appreciate your helpful suggestions. If you have any more, let me know. I should have only taken Diamox twice, but since it came right back up both times, I’ve taken it a total of 4 times.
Wednesday, May 1, 2013 at 7:54pm EDT
HP is out of control. I’ve kept almost nothing down. I even threw up Diamox a couple times and had to take it again. Zofran is not all that helpful. I talked with Dr. Gray. She said that I can take Diamox every 3-4 hours. I am not sure that is enough. Last fall it took 5-6 weeks after patching for HP to get out of control. Not so this time. HP is out of control the next day.
Wednesday, May 1, 2013 at 8:49pm EDT
Rebound high pressure blew out my previous patches in either February or March. Those patches held since September. The patches blew out after 5 months of being sealed. So all the activity restrictions are in place again… The last time, I tried all three medications that reduce pressure. My brain makes so much spinal fluid that wasn’t enough. I started one of the medications today at a pretty high dose, but I am still vomiting, among other symptoms, from the pressure. High pressure has it’s own symptoms, including a different, but just as severe headache, eyesight changes, and others. Living with a spinal headache for nearly 24 years certainly changes my perspective.
Thursday, May 2, 2013 at 11:02am EDT
The covering of my brain and spinal cord that is supposed to be water proof to hold the fluid is poor quality. Not sure anything can really be done about that.
Thursday, May 2, 2013 at 4:49pm EDT
It’s the feelings of isolation from not being able to exercise as much as I like that get me down. My back is very stiff and I walk a little different, I think that that turns off a lot of people. My stiff spine/neck makes it appear like I am being very direct and serious when I talk, even if I am not. I know what you mean about convincing yourself that people will be better off without you. Anything below my pressure being 16, I have a LP headache, but when my pressure gets down to an 11 or less, the pain does not go away upright or lying down, and my vision becomes affected. This last trip to Dr. Gray, my pressure was 10, I don’t know what I will do if that happens again. I rarely have sinus problems. If I do, it’s a head cold. I have allergies, but they have never given me a headache.
Thursday, May 2, 2013 at 6:36pm EDT
I have slight HP. It’s HP because putting on my binder makes it worse. Dr. Gray said that the extreme HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten extreme HP immediately after her procedure, and not 6-18 hours later. I think the extreme HP went away because I blew a patch in my sleep.
Thursday, May 2, 2013 at 6:39pm EDT
We are going home tomorrow.
Thursday, May 2, 2013 at 6:51pm EDT
I am thinking about going to LA. If this doesn’t work, that’s the next step. She injected a total of 30 cc of blood and glue into my epidural space. Even if I am leaking, that much volume would displace CSF in my dura and raise my pressure. I think glue stays in there about a month. I plan to have all my stuff ready for Dr. S before then. If we went to LA at the same time, we could share a room. Hotel rooms hold 3-4 people, so our hubbies and us could share a hotel room to lower costs. Prices in LA are insanely expensive.
[Actually, we found them to not be as bad as we expected, other than the $4.59 gas prices. I walked a lot and Karen took taxi.]
Thursday, May 2, 2013 at 8:47pm EDT
I have slight HP. It’s HP because putting on my binder makes it worse. Dr. Gray said that my VERY HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten very HP immediately, and not 6-18 hours after the procedure.
Thursday, May 2, 2013 at 9:11pm EDT
Depression and anxiety is what I was diagnosed with for all these years... You’re not going crazy.
Thursday, May 2, 2013 at 9:16pm EDT
It’s not the healthiest thing to do, but I’ve learned to put on a happy face to fool people. Now it took me about 15 years to learn that. My hubby did not go into the procedure room with me.
[I don’t like needles. There are also sterilization issues.]
Friday, May 3, 2013 at 6:36pm EDT
It’s not in my head, because the fluid drained out. We came home today. The low pressure symptoms have all returned. I know the testing at Duke will not show certain problems with the dura (covering that holds in the spinal fluid). I am thinking that I have something like that. I am not sure, but Los Angeles may be next.
Friday, May 3, 2013 at 6:43pm EDT
I came home today. The low pressure symptoms have all returned. I just don’t know what to do anymore. I saw Dr. Gray 5 times this month alone. My OP’s were lower than they had ever been. I am SO DEPRESSED! Something is wrong with me.
12 Tips for 12 Years Sick
Friday, May 3, 2013
Until someone has it they will never understand what it is like to have burning, stabbing, dull, pinching, pulsating, gnawing severe pain every minute of every day…me my health problems are BORING. All we can do … is back away from toxic people. They just don’t have coping skills to deal with chronic illness. If it can happen to YOU it can happen to THEM and that’s scary. I think illness in anyone forces people to look at their own mortality. So it’s not you it’s them. But that article I posted “12 Tips for 12 Years Sick” mentioned something about learning to be the kind of friend that does not always talk about their health problems.
I then realized that it is crucial never to use the word headaches while discussing our condition. Practically everybody has experienced one and related to us on those terms. Thus they do not sympathized, nor understand what we feel. Even my gp had no sympathy for almost a year, until he saw it was affecting my senses and balance.
To people like that I stress that it is a neurological condition, that feels more like the aftermath of being hit with a baseball bat whenever I get up.
I lost my friends over this also. They just didn’t understand and the drs not giving me a diagnosis for years didn’t help matters. i hope youre day gets better.
I think we all experience it. nobody knows how to deal with someone when the going gets tough. they tend to suck back into their own lil world where nothing is wrong. they see us like this for so long and think there’s no way it can go that long without being fixed.
I’ve also written about this before, but there’s no denying it: friendships and chronic health problems often don’t mix. Some of my friends have disappeared; others have stayed around, but our relationship has been changed by my illness.
As for friends who haven’t stuck around, our friendship may have faded away for any number of reasons. I’ve decided it’s about them not me. Illness may raise their own fears about health and mortality. They may not have the patience to stick with a friend who’s become so unreliable (I often have to cancel at the last moment – my friends who’ve stuck around are fine with that).
Just as being always negative is bad, so is always being positive.
Friday, May 3, 2013 at 10:34pm EDT
[They know] my problem, but like most everyone else, they don’t realize or believe how debilitating CSF problems are.
Seems most everyone that I tell may not say it directly, but they think that I am crazy for going so far for medical care. Then when that care doesn’t fix me, their belief that I am crazy is confirmed.
Bob has an aversion to caffeine, so all we have in the house is a little bit of caffeinated tea, which didn’t help last week when I drank one cup of it. [Near the end she was taking 200mg tablets of caffeine.] Some people simply have a stretchy dura.
I would think that if my CSF was quickly absorbed, HP would not have occurred nearly 24 hours after she injected 30cc of blood and glue. I discovered through my own research that CT myelograms are not good at finding high-flow leaks. The myelogram portion of the test is first.
By the time the CT portion is done, the contrast has equalized in the dura and wherever it’s leaking. I wonder if that is my problem. Digital subtraction myelograms like Cedars has, are much better at locating high-flow leaks, but they too miss some. Thank you for your supportive and kind words. They mean a lot to me. I feel so much like giving up. No one locally understands.
Saturday, May 4, 2013 at 1:00pm EDT
I am home from Duke, and so disappointed.
I saw Dr. Gray 5 times this month. The times she checked my pressure it was at record lows for me. She added artificial CSF and did blood and glue patches. I had instant relief of my pain and other symptoms for about 2 days after each procedure. I am now back to where I started. I had a different reaction to the procedure she did on Tuesday. She injected a total of 30cc volume combination of blood and glue patches in 9 locations. The first 24 hours after, I felt great. Second 24 hours had very HP. Kept almost nothing down for 24 hours. I took one 250 Diamox every 3-4 hours with a sip of water.
I had to sit up to sleep. The third 24 hours, almost no HP, and took only 1 Diamox in the morning. Yesterday, and today, horrible LP is back with all the associated horrendous symptoms. … She did, however, mention something in when I was in recovery about dural reduction surgery. I didn’t feel well enough to question that.
I know my body doesn’t have a problem making CSF because in December, she put a hole in my dura to relieve HP symptoms. I got no headache after that procedure.
Saturday, May 4, 2013 at 4:41pm EDT
Unless I have a crappy dura, which I may, I’ll have a good idea where the leak is after all 5 reports are available for April and I correlate them. It takes about a month until the reports are on Healthview. They are updating Healthview, I don’t know if that will make it take longer. Any site she repatched last Tuesday that she patched earlier this month can be eliminated as a possible leak location. There’s no way that I blew out patches and went back to LP within a day or two after the first 4 procedures with no HP. My OP’s were around 10 this month. They’ve never been this low before. If these 4 procedures patched some small leaks, my OP would have went up SOME, even if it was still low. That didn’t happen. The procedure Tuesday was the only one that put me into HP. For the first 24 hours after the procedure, I felt good so HP can’t be blamed on the volume of space 30cc took. HP occurred 24 hours later and got so bad that I kept almost nothing down, even with Zofran. I took one 250 Diamox every 3 hours with a sip of water. I took 2, 250 Diamox at bed. My patches blew in my sleep. I had to sleep sitting up.
Saturday, May 4, 2013 at 7:27pm EDT
I haven’t taken Diamox since then, and my pressure is very low. Dr. Gray has checked my pressure enough that I know my head has the imploding feeling only happens when my pressure is 10 or less.
I don’t that I took enough Diamox on Wednesday and the patches blew from HP, or HP blew a hole somewhere else.
Monday, May 6, 2013 at 7:11am EDT
The unimaginable pain level with no way to stop the pain is what will do me in.
A local doctor prescribes morphine and oxycodone. My last refill of both was 6 months ago, so it’s not like I take it often. The medication doesn’t work.
Asking for a particular pain medication like fioricet is seen as drug seeking behavior… Each time Dr. Gray added Elliot B, I had instant pain relief for 24 hours.
Monday, May 6, 2013 at 12:49pm EDT
I heard from Dr. Gray. She wants me to wait for a while, but I am getting worse. We spent 4 of the last 5 weeks in Durham. The first 4 procedures she did, I either never left low pressure, or left low pressure for about 24 hours IF she added artificial CSF... The 5th procedure was different. She randomly patched locations. I felt good for 24 hours, had horrible high pressure the next 24 hours despite taking pressure reducing medication every 3 hours. I had to sleep sitting up because the pressure was so bad. I know that I blew a patch during the night. I went back to low pressure, and remain there. I think that I blew a high-flow leak within 10 days after she had me stop the pressure reducing medication in February. CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars in LA is capable. I think that I reacted different to the 5th procedure because she accidentally patched the high-flow leak.
Monday, May 6, 2013 at 2:20pm EDT
No one has discussed a shunt with me. I KNOW that I have issues with HP and Diamox not controlling it because she put a hole in my dura last December because 3000mg of Diamox and 100 HCTZ could not control my pressure. I think that I blew a high-flow leak within 10 days after she had me stop Diamox in February.
CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars is. I think that I reacted different to the 5th procedure because she accidently patched the high-flow leak but the pressure blew it open.
The hospice workers [for Karen’s mother] wear masks and gowns when they come for the MRSA. Her oxygen levels go way to low when she does any walking. That will never improve because of the pulmonary fibrosis. She’s so weak that she can hardly get up, and has nearly fallen several times. When the time comes, I don’t know how to deal with this when my upright time is so limited!!!!!!!!
Monday, May 6, 2013 at 8:15pm EDT
Things have gotten worse. My 81 year old Dad has a lump that they think is a hernia and needs surgery. I give up.
Monday, May 6, 2013 at 8:43pm EDT
It’s mostly my head and neck that hurts, but in between my shoulder blades has been intensely itchy for the past several weeks. I believe this is where the leak is. That’s where she concentrated her patches the last time that gave me HP.
Monday, May 6, 2013 at 8:51pm EDT
I don’t know how I will last. My pressure is so low that I am afraid of having permanent damage the longer this goes on.
Monday, May 6, 2013 at 9:59pm EDT
So thoughtful of you to ask! [About being Christian.] I don’t go to church, but I do believe in a higher being. All religions throughout history can’t be correct, but I believe a higher being exists.
Tuesday, May 7, 2013 at 2:49am EDT
Last fall, she patched several areas. HP got so bad she had to put a hole in my dura in December. 3000mg of Diamox daily could not control the pressure. The first 4 times that I saw her this month, I had instant headache relief for about a day after she added Elliot B, then went back to LP. The 5th time she patched me, she did not do a lumbar puncture so no Elliot B. HP got so bad 24 hours after the procedure that one 250mg Diamox every three hours, and two 250mg Diamox at bedtime could not control it. I had to sleep sitting up. I blew my patches during the night. And remain back in LP.
Tuesday, May 7, 2013 at 2:50am EDT
I did not need Diamox the first 4 procedures either. I simply went back to LP. I believe that she patched the wrong areas these times.
[They did not show up on any tests, so it was an educated guess at best where to patch.]
Tuesday, May 7, 2013 at 2:59am EDT
She thinks she knows where the leaks are. She did a new CT myelogram, but said it looked very similar to the one from last fall. She used glue. The fifth time she patched me, she randomly patched areas. I believe she accidentally found a high-flow CSF leak that time. CT myelograms are not good at localizing high-flow leaks. Digital subtraction myelograms are better.
Tuesday, May 7, 2013 at 5:17pm EDT
A high flow leak is a fast leak. During a CT myelogram, the CT is done after the myelogram. That delay allows the contrast to equalize in your dura and wherever it is leaking to. After the contrast equalizes, they can’t localize where the leak comes from.
Tuesday, May 7, 2013 at 8:53pm EDT
I’ll call tomorrow to schedule a date. I plan to keep the date off the forums, but will let you know privately.
[Karen was always worried about our house being empty. I can assure you it is well watched!]
Tuesday, May 7, 2013 at 9:03pm EDT
I am scared, and that’s an understatement!!!!
Tuesday, May 7, 2013 at 9:07pm EDT
Take that first scary step. This is our lives!! I have so many fears about this trip!!!!
Tuesday, May 7, 2013 at 9:41pm EDT
I get the head in a vise thing with LP. Ringing and tingling were worse with HP, but Diamox has those side effects, too.
Wednesday, May 8, 2013 at 10:26pm EDT
I understand how someone in severe Chronic Pain feels so bad that they consider suicide. I do not condone those people.
[I do not understand, perhaps she meant ‘condemn’ rather than ‘condone’?? She supported people’s right to die.]
Thursday, May 9, 2013 at 5:50pm EDT
I see Dr. Schievink on the 28th, the day after Memorial Day. I talked with Mom. She fell twice last night. Once she didn’t go the whole way down. The other time she did. Dad had to pick her up. I told her that Dad picking her up will make his hernia worse. He got his hernia from lifting her, but that is another story. She needs in-home assistance, or to go into a home. Neither of which she liked…
Thursday, May 9, 2013 at 5:55pm EDT
I personally believe suicide not a cowardly act but a very brave thing to do. None of us know for sure what happens when we die.
[This has me bawling my eyes out. As the grieving husband, I cannot possibly agree with this. She also told me verbally at some point that it is the brave, not the cowardly that commit suicide. Sadly, I did not recognize it as a warning sign. Make sure that you do!
Someone suggested to me to check out the book, Suicide: What Really Happens in the Afterlife? by John Klimo and Pamela Heath. I have not yet read it. Perhaps, if Karen had known of this book and read it, she would still be here?]
Thursday, May 9, 2013 at 6:38pm EDT
Sometimes I wonder if I should go. Dr. S didn’t see anything on my Duke myelogram, but my very low OP and my changing symptoms tell me something is wrong.
Thursday, May 9, 2013 at 7:28pm EDT
Dr. Gray had me stop Diamox in late February. Within 10 day of that, I believe that I blew another leak. The first 4 times in April she patched me, I went back to LP after the Elliot B leaked out. The 5th time she patched me she did not do a lumbar puncture so no Elliot B to pump up my pressure. She randomly patched locations and my pressure went very high for a day then I blew out…
Thursday, May 9, 2013 at 7:35pm EDT
I wish I listened to my body too. [About how much Diamox to take.] Dr. S said my Duke myelogram did not show a leak. That concerns me…
Thursday, May 9, 2013 at 10:00pm EDT
Bob brings his work with him. I still worry about the time he is not physically present. We spent 4 of the last 5 weeks at Duke. My husband got more work done than he would have at work, but his employer likes him physically present, too. I worry that since Dr. S did not find anything on the Duke myelogram that he won’t find anything.
Thursday, May 9, 2013 at 10:51pm EDT
I am scared about the whole process. I sent him an email with a summary of what happened concentrating on last month at Duke. Dr. Gray did blood and glue patches. I believe she patched the wrong areas the first 4 times. The 5th time she randomly patched areas, and HP went out of control 24 hours later. HP was so bad that I had to sleep sitting up. I think that I blew the patch in my sleep. She doesn’t think this could happen. I KNOW it happened. It’s possible that another area of my dura blew out instead, but I think the freshly patched area would be the weakest link. I have a history of HP going out of control while taking 3000mg of Diamox. That happened to me in December and Dr. Gray had to put a hole in my dura. The bottom line is that my pressure was 14.5 when I began seeing Dr. Gray. Now it is 10 and my symptoms are worse. She helped me a lot for several months last fall. I blew holes within 10 days after she had me stop Diamox in February.
Thursday, May 9, 2013 at 11:35pm EDT
I keep a positive attitude toward Dr. Gray. She helped a lot of people. I believe that she can help me again in the future.
Friday, May 10, 2013 at 12:09am EDT
If you have psuedo-chiari caused by a CSF leak. Fix the leak. Your brain will float in CSF again and psuedo-chiari goes away on its own.
Friday, May 10, 2013 at 12:11am EDT
Babies are so sweet and a joy to be around.
Friday, May 10, 2013 at 12:20am EDT
They are such a joy. Watching them explore everything for the first time is utterly amazing.
Friday, May 10, 2013 at 12:43am EDT
[Being asked, “Do you have children?”] Unfortunately, no. I have leaked for 24 years. I am 43. That kind of pain prevented much of a life.
Friday, May 10, 2013 at 2:40pm EDT
All my Duke records for April were on my Healthview account last night. Dr. Gray mentioned the last time that I saw her something about dural reduction surgery. That’s not in my records. If I need that, then my dura stretched so much since February when my pressure was over 16 that I can no longer fill my dura above a 10. I don’t believe it has, but I’ll mention it to Dr. S.
Saturday, May 11, 2013 at 3:12pm EDT
Other than my period starting, I feel the same. Head imploding, blurry vision, nausea, dizziness, and horrendous pain. I feel better lying down than upright. This is definitely LP pain. My LP is very low because the headache is not going away lying down. I’ve had LP for 24 years. My LP began going lower in February, and that’s when the LP headaches while lying down started. Until recently, I had no headache lying down, unless it was HP. HP and LP headaches lying down are different. Mom is falling, diarrhea, and that kind of thing. … I don’t know what I will do if I have to cancel or reschedule seeing Dr. S. Nothing stops the pain. I haven’t found anything that works on my nausea other than several hours of lying down. Breakfast is the only meal that I can eat. My body is the most out of shape physically, than I have been in few years.
Saturday, May 11, 2013 at 3:37pm EDT
We’ll be flying. There will be no sight seeing because I am unable to.
Head imploding, blurry vision, nausea, dizziness, I feel my brain hitting the inside of my skull, and horrendous pain.
My spinal fluid pressure has been going lower in instead of up with an increase in symptoms.
The doctor there is in neurosurgeon, I’ll be admitted to the hospital for tests, and treatment will depend on that. My Mom is in hospice.
Saturday, May 11, 2013 at 3:52pm EDT
People suggest things to me like, “Have you tried Advil?” or “My cousin’s, Mother’s brother’s Father took this herb and it took away the headache that they had for 2 years.”
Saturday, May 11, 2013 at 4:09pm EDT
I read in Dale Carnegie’s, “How to Win Friends and Influence People” that people spend 90 percent of their time thinking of themselves. People don’t think how their actions will affect others. I must admit, that I consider how my actions affect others more than I used to, because of this illness. Some people think that my illness can’t be as bad as it is. They think that I use my illness as an excuse to get out of doing something. I forgive you for being in a bitter state. We all have those days, or in my case years.
Saturday, May 11, 2013 at 4:18pm EDT
You’re not weird for feeling ashamed. People DO look at us differently and judge us, if they know we are sick. I don’t tell people either for that reason.
Saturday, May 11, 2013 at 4:31pm EDT
I was the youngest. My parent’s always focused on the negative like that. How much does our upbringing affect our illnesses?
Saturday, May 11, 2013 at 4:36pm EDT
How we were treated in our very early years [up to age seven] has a major impact on who we are today. I think our parents did the best that they knew how to, as we do today.
Saturday, May 11, 2013 at 4:47pm EDT
If [doctors] had support staff with communication skills as good as … and an organized system for prescription refills, … could see more patients. Let the support staff handle the parts of the job that do not directly generate income for [the hospital].
Monday, May 13, 2013 at 9:50am EDT
I don’t think that she over patched, but I have no way of knowing. My leak sites used to be in my low back. I don’t know where they are now.
Monday, May 13, 2013 at 9:53am EDT
The whole thing has me so unnerved. That and my Mom being in hospice. My head is imploding, vision issues, dizziness, nausea, horrible headache, and weird things that I know I am forgetting.
Monday, May 13, 2013 at 2:10pm EDT
I am frustrated, too. I am sicker than ever!! When I saw on the forum that Duke is getting new equipment, I thought to myself is this only an equipment upgrade or is something wrong with the old equipment? Something wrong might explain why my new myelogram is no different than my old???? Something is wrong, my pressure going down and symptoms increasing doesn’t happen for no reason at all.
[It was an upgrade.]
Monday, May 13, 2013 at 2:25pm EDT
I don’t know how I will make it… Every time the phone rings it is scary with all my parent issues. If my pressure wasn’t going down, I would think some of my symptoms were emotional. The pain is horrendous and my nerves are shot.
Monday, May 13, 2013 at 2:33pm EDT
I am sure it is LP. My head is imploding, eyes are being sucked in, and many other symptoms. My appointment is the 28th.
Tuesday, May 14, 2013 at 5:31pm EDT
Things are crazy around here with my Mom having hospice care at home. Her MRSA. She keeps falling among other things. Dad and his hernia, which I believe it got from lifting her.
My intracranial pressure is not staying up, and that makes it so had to be in the upright position. I don’t know what I will do if I have to change my appointment because of Mom or Dad.
[Wasted worry. Mom and Dad lived longer than Karen. Sept./15/2013.]
Tuesday, May 14, 2013 at 8:08pm EDT
I feel my brain sinking into my shoulders. I was fairly stable over the years, until recently.
My head is imploding. My vision is blurry and/or double if I am up too much. I am dizzy. The pain is horrendous. I am sure that I am missing symptoms.
Every time the phone rings it’s usually bad news with my parents. Mom is in hospice and Dad has a hernia. My Mom has advanced pulmonary fibrosis, or scaring of the lungs and MRSA in her lungs. She is on oxygen 24/7. She’s had strokes and heart attacks in the past. She has inoperable heart blockages. I’m afraid that if Dad has surgery, he will get MRSA in his incision. I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don’t know what I will do if I have to change or cancel my appointment with Dr. Schievink.
My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure.
Tuesday, May 14, 2013 at 10:26pm EDT
… I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don’t know what I will do if I have to change or cancel my appointment with Dr. Schievink. My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure. [Wasted worry. ]
Wednesday, May 15, 2013 at 8:05pm EDT
I feel your anxiety. I am SO scared between this and my parent issues. I think that I am going insane!
Wednesday, May 15, 2013 at 8:10pm EDT
Thank you for your encouraging words. Everyday I think about giving up. This is a daily struggle.
Wednesday, May 15, 2013 at 8:12pm EDT
Struggling with this for 24 years, I don’t think that I will ever get my life back. Not much is known about this illness for short term leakers, let alone long term leakers.
Wednesday, May 15, 2013 at 8:13pm EDT
It’s a weird condition that very little is known about. We are the research. I try to remain positive, but it is so hard. I am better than I used to be.
Wednesday, May 15, 2013 at 8:17pm EDT
I meant better with being positive. I am not better physically. I am worse.
Wednesday, May 15, 2013 at 8:19pm EDT
My symptoms are horrendous head pain, head imploding, nausea, vision issues, dizziness are all present daily. Caffeine, and the binder help, but do not totally relieve the symptoms.
My eyes are light sensitive. Every time I move my head, I am slightly dizzy, my eyes go funny, and my brain feel like it is hitting the inside of my skull. After lying down all night, I can eat a full meal at breakfast. Not so with lunch or dinner. Zofran and Promethazine do not help.
Your brain might be compensating by making extra CSF, rather than leaking less. I am an emotional train wreck, too. I need to get off here now. I will be back on tomorrow.
Wednesday, May 15, 2013 at 11:23pm EDT
Dr. Gray adds Elliot B prior to her myeologram, so that should help to find leaks. I am not thrilled with the idea of surgery, but I haven’t had long term success with patches. … I have no idea how many cysts that I have. For me, I cry because I feel so helpless. I do what I can for myself. Others simply don’t get it. I look fine, therefore, I do not get help around the house, even if I need it. My parents have a new horror story almost every day. I worry so much that their health issues will interfere with my trip to L.A. I firmly believe that LP negatively affects our physical, as well as mental health. I get upset with myself for crying, which only makes me more upset. LP makes me feel lethargic, dizzy, nauseated, and gives me trouble with my vision. Breakfast is the only full meal that I can eat. I can eat a few snacks throughout the day. Much more than that makes me want to throw up. Medication for nausea doesn’t help. Dr. Gray sent me an email today asking me how it was going. I told her how I felt and that I was going to see Dr. Schievink.
Thursday, May 16, 2013 at 6:41pm EDT
I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don’t have friends that can help. They are long gone. The couple local friends that I have, have their own Chronic Pain/health issues that prevent them from helping.
Thursday, May 16, 2013 at 7:36pm EDT
I am drinking as much as I can.
[On a hot day it seemed like she would drink a gallon or two of water.]
Dr. Gray thinks that I need dural reduction surgery. I am not sure that I agree with that. She had to put a hole in my dura in December because my pressure, or in my case volume was too high. The 5th time she patched me last month, I felt good for 24 hours, developed HP the next 24 hours which Diamox every three hours did not control. I had to sleep sitting up. I went back to LP during that night. Dr. Schievink doesn’t see anything on the Duke myelogram that I had last month. I know he does other tests, but not seeing anything on Dr. Gray’s myelogram concerns me. I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don’t have friends that can help. They are long gone. The couple local friends that I have, have their own Chronic Pain/health issues that prevent them from helping.
Thursday, May 16, 2013 at 7:39pm EDT
Not focusing on myself so much with my health issues helps me.
I may not be able to do things physically, but I like to stay up to date on what happens in others lives.
Thursday, May 16, 2013 at 9:17pm EDT
Sorry that I have not gotten back with you.
Things are crazy here getting ready to go to Cedars from Pennsylvania and with my parents health issues. I can’t remember if I told you but my Mom is in hospice.
I imagine it is traumatic for older folks when they need in-house help or a nursing home. The independent part of their lives is gone forever. The ‘care’ received in most nursing homes isn’t great. The staff may be well-intentioned but the staff to resident ratios are way too high to give good care.
This stresses out the workers, and that stress makes them treat patients badly. I am not saying all workers are like that, but I think most are.
Thank you for thinking and praying about me every day. I appreciate it.
Thursday, May 16, 2013 at 9:30pm EDT
I googled lumbar catheter placement. It’s a lumbar drain. I hope that I don’t get a leak from that. I don’t know if he will do surgery or patches. I posted a message on the Dr. Schievink forum talking about my appointments at Cedars. To say that I am scared is an understatement! These procedures are all weighing the risks or complications verses benefits.
Thursday, May 16, 2013 at 10:47pm EDT
Since I decided to see Dr. Schievink, I have been mostly quiet on that forum.
I am more active on the forum for Dr. Schievink’s patients.
Sometimes words in text come across differently than the same thing said in person. In person, you can read body language and voice inflections.
That said, the three subjects, money, religion and politics usually cause friction in a conversation. I am going to bed in a few minutes. Tomorrow, I will get the local testing that Dr. Schievink wants.
Thursday, May 16, 2013 at 10:50pm EDT
I get it. Healthy people think things are easy to fix. Things don’t work like that…
[How do we get the healthy people to understand?]
Friday, May 17, 2013 at 7:09pm EDT
I feel like I am about to explode from the stress of my parents, and my own health…How much can a person take? I heard from … Dr. Schievink’s scheduler. My appointment to see him on Tuesday, the full spine myelogram later that day, and the infusion the next day, in addition to dural reduction surgery on the 31st are all scheduled. I had my pre-op tests today. My PCP has no openings until next Thursday. I need him to fill out the paperwork for my appointment the following Tuesday. That weekend is Memorial Day. I am frightened that the paperwork won’t be done on time. If it’s not, than Dr. S won’t do anything and all the money spent going to him is wasted.
[Paperwork did make it in time, didn’t like it at all that it was last minute.]
Friday, May 17, 2013 at 7:16pm EDT
I will stress it with him at my appointment. Dr. Gray suggested dural reduction surgery to me. I assume told him? Frankly on http://www.cfsleak.org had dural reduction and it helped her.
Saturday, May 18, 2013 at 10:58am EDT
I am not sure if I wanted dural reduction surgery. I am not sure that, that’s what I need. I hope his tests show something that can be fixed without that kind of surgery.
Saturday, May 18, 2013 at 11:00am EDT
I need to talk with him about how I reacted differently the fifth time Dr. Gray patched me last month, but I quickly blew out from HP. I believe that is a clue to where I am leaking.
Tuesday, May 21, 2013 at 4:03pm EDT
[Anyone know anything about this, like a link to the video?]
I didn’t watch it, but I heard that the show Royal Pains on USA network ended last season with the main character having a spinal fluid leak. This is exciting, considering that leaks are under recognized in the medical community, let alone rarely appear in entertainment. He had a blood patch and immediately felt better, but went to a wedding that night. Anyway, I don’t know if they’ll carry it over to next season, June 12th, but it ended with him having neurological complications from the spinal fluid leak. Great for awareness of this condition!
Wednesday, May 22, 2013 at 6:05pm EDT
I am very scared, but I am more scared of doing nothing I worry that he won’t find the leak since he did not see anything on my Duke myelograms. I don’t know how long I will be in the hospital.
Thursday, May 23, 2013 at 2:32pm EDT
When we get back home, my husband will not be here 5 days a week for 12 hours because he will go back to work. One or two nights a week, he spends all night with his Mom. He takes is work with him when we go on trips, but when he is home, they want him physically present.
Thursday, May 23, 2013 at 2:33pm EDT
My hubby won’t be around much to help when we get back home. They want him present at work.
Thursday, May 23, 2013 at 2:56pm EDT
I don’t watch TV so I have no idea what is on. Sometimes I believe that I am not making this up. Other times, I am not so sure. No one physically around me understands if I say anything about how I feel. I put on a happy face. They have no idea how hard my activities of daily living can be. I have neck pain and stiffness with HP and LP. It’s worse with LP. What can I search for on YouTube to see the funny and touching videos?
Thursday, May 23, 2013 at 10:15pm EDT
If I had surgery in L.A., I’d probably be home about a week later. Do you know of any organizations that could help me after I get back home. I won’t need 24 hour care, just help with things like shopping, cleaning, etc.
Arrive in L. A.
Monday, May 27, 2013 at 2:04pm EDT
I am at the hotel in L.A. Being upright past my limit on travel day (yesterday) and drinking less than usual so I did not have to go to the bathroom as often flying across the country gave me killer head pain last night, along with worse than usual blurry vision, pressure in ears, dizziness and nausea. When I got to the hotel, I lied down and kept drinking as much as I could keep down. I was afraid that I would go to the ER here for the nausea but managed not to. I drank a total of 48 ounces of water over a period of 5 hours before I had to urinate. The plane ride was okay, other than the first class seats did not recline very much which meant I had to stay upright. I couldn’t have done coach.
We flew Airtran from Pittsburgh to Atlanta, Atlanta to L.A.
[It was the least cost flight. In all her pain she always remained frugal.]
Going home, especially if I have surgery, I’ll get a non-stop flight. Since I don’t know when I will go home, we bought a one way ticket here. We’ll by another one way ticket to go back home.
The Super Shuttle driver that brought us to the hotel from the airport gave us the most terrifying ride that we ever had. Fast stops, slamming brakes on, changing lanes without checking the blind spot, and backing onto the road without looking. another passenger said that he could leave them off right there. The driver took that literally and slammed his brakes on in the middle of the 4 lane highway causing the cars behind us to skid. Our driver took up both lanes going in our direction when he stopped. The passenger that wanted off told him to pull into the driveway to let him off. If I have surgery, I can’t ride with someone that drives like this back to the hotel or airport. I’d rip the incision open. This is L.A., and people may drive different than at home, but come on.
[We were told later, this was NOT normal for a shuttle driver.]
I see Dr. Schievink tomorrow. After the appointment, I have a full spine MRI with myelography. Wednesday, I’ll be admitted to the hospital for infusion therapy. Surgery is scheduled for Friday, if he does it. I talked with Mom today. She’s running a fever again, her oxygen level is low. She is very confused. I told her 25 times or so that she will be in bed tomorrow before I am done with the tests. L.A. is three hours behind home. She couldn’t understand what I meant. She’ll probably call tomorrow and not understand why I am still having tests.. She has advanced pulmonary fibrosis and MRSA. I internalize a lot of my stress, anxiety, feelings about this illness, etc., because others don’t understand. …
The doctor at the pain clinic required me to [see a psychologist at the pain clinic]. I leaked for almost 24 years and counting. The therapist thought that I practice sick behavior for attention. Talking with her about things that I want to do, but physically can’t, just left me more frustrated. She didn’t believe that I physically couldn’t. She fired me when I told her that I was going to Duke. She tried everything that she could to get me to change my mind about Duke. When I refused to, she fired me. How come? Was she afraid that she would be proved wrong? Any good therapist would keep an open mind to learning about difficult cases. Dr. Gray proved that it is intracranial hypotension. At home I spend most of my time alone struggling to do what I need to do. I drag others physically around me down with my problems. They want to do their own thing, and not deal with someone always sick. I will talk with a trained professional again, ONLY if they know about CSF leaks or are open to learning about CSF leaks and the effects they have. I have no idea how to know this before seeing someone, which is why I haven’t. … Sorry for writing a book. Karen
[Do these psychologists exist? Ironically, you are now reading her book.]
Monday, May 27, 2013 at 6:36pm EDT
I am saddened that you are nauseous and pain medication is not working well. hope that you feel better soon. I read that originally you planned to go home today?
How did you get from the airport to the hotel? How will you get back to the airport? I ask because we had a bad experience with Super Shuttle.
The Super Shuttle driver that brought us to the hotel from the airport gave us the most terrifying ride that we ever had. Fast stops, slamming brakes on, changing lanes without checking the blind spot, and backing onto the road without looking. another passenger said that he could leave them off right there. The driver took that literally and slammed his brakes on in the middle of the 4 lane highway causing the cars behind us to skid. Our driver took up both lanes going in our direction when he stopped. The passenger that wanted off told him to pull into the driveway to let him off. If I have surgery, I can’t ride with someone that drives like this back to the hotel or airport. I’d rip the incision open. This is L.A., and people may drive different than at home, but come on.
[After this, we took a Taxi everyplace. I later found it was actually cheaper to take a limousine than a taxi.]
Monday, May 27, 2013 at 9:13pm EDT
Will your air plane seat going home be a lie flat seat? I will need a straight through flight from LA to Pittsburgh. The only airlines that offer that is United and US Air.
I’m terrified that I’ll get a seat that doesn’t recline very much. I bought one way first class tickets on AirTran coming here. It’s a discount airline so I can’t complain much, but I expected the seats to recline more.
Tuesday, May 28, 2013 at 1:02pm EDT
Being up past my limit always makes me sick. I’ll take care of myself as good as I can. I see the doctor today. Unless he changes his mind, I’ll be admitted to the hospital tomorrow. He’ll infuse artificial spinal fluid to get an idea where my pressure should be.
Tuesday, May 28, 2013 at 10:36pm EDT
I saw the doctor, and had a full spine MRI with myelography today. The plan is to admit me in the morning. Infuse artificial CSF to find where my pressure should be. Before possible surgery on Friday he wants another myelogram to see if he can locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules surgery for out of town patients because it’s easier to take surgery out of the schedule if I do not need it than to add it. I have to be at the hospital tomorrow morning at 10am for more blood tests. The infusion is scheduled to start at 1pm. If he does surgery Friday, I’ll be in the hospital for approximately 4 days afterwards, and stay at the hotel for about 3 days after that.
Tuesday, May 28, 2013 at 10:52pm EDT
The taxi drivers today were much better. I saw Dr. Schievink, and had a full spine MRI with myelography. The plan is to admit me in the morning. Do infusion therapy. Before possible surgery on Friday he was going to do another myelogram to see if he could locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules all that for out of town patients because it’s easier to take it out of the schedule if it turns out that I do not need surgery than add it. I was supposed to get my blood typed today but there was not time. My appointment with Dr. Schievink was 12:45. I got out of his office at 2:50. I went to the lab for the blood test but two patients were ahead of me. I didn’t have time to wait. I had to be at the imaging center at 3:30. I didn’t get out of the imaging center until almost 6pm. The lab closed at 5:30. We’ll go early in the morning for that test. I hope that doesn’t screw up the lumbar catheter placement that’s scheduled for tomorrow. I have to be at the hospital tomorrow morning at 10am for more blood tests. Lumbar catheter placement is scheduled at 1pm. If he does surgery Friday, I’ll be in the hospital for approximately 4 days afterwords, and stay at the hotel for about 3 days after that.
Tuesday, May 28, 2013 at 11:09pm EDT
The MRI was almost 2 hours. About 2/3rds of the way through the test the tech injected contrast into my arm. I’d rather he find leaks on the tests than do dural reduction surgery. Infusion therapy is where I am an inpatient and he infuses artificial CSF over a period of a couple days to find where my pressure should be. I am very scared. His nurse did not know what Elliot B was. … The running around hasn’t been too bad. We are at the Elan. Renting a car and paying to park would be so much more expensive than a taxi. A taxi including the tip is 7-8 dollars one way to the hospital. The hospital is only a few blocks away. Bob walks when I am not with him.
[The good thing is I lost some weight. I thought about buying a bicycle until I saw a hit-and-run take out a fellow on a bicycle right across the street from me.]
Tuesday, May 28, 2013 at 11:26pm EDT
Someone said Cedars had free WiFi. When I am under the effect of drugs, I won’t be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will.
[I set up an encrypted tunnel so that we could use these ‘free’/’open’ WiFi’s without worrying about having our identity or something stolen. Always something to be aware of.]
Tuesday, May 28, 2013 at 11:28pm EDT
I don’t have all my teeth. I had my wisdom teeth and 5 others removed when I was in high school before I got braces. I don’t know for sure how long I will be here. [I really don’t know why she said that at this point, there was no context for it at all. Medication?]
Wednesday, May 29, 2013 at 2:03am EDT
When I am under the effect of drugs, I won’t be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will.
Wednesday, May 29, 2013 at 7:45pm EDT
I don’t know if they are doing surgery for sure. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I’m afraid that my pressure won’t be high enough to show leaks, if the resident doesn’t hook it up until very late tonight.
Wednesday, May 29, 2013 at 7:51pm EDT
I read that when pressure is very low from the leaks, the leaks won’t show up. When you increase pressure, the leaks show.
Wednesday, May 29, 2013 at 7:52pm EDT
They put in the lumbar drain. I am waiting for the resident to hook up the infusion pump. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I’m afraid that my pressure won’t be high enough to show leaks, if the resident doesn’t hook it up until very late tonight.
Wednesday, May 29, 2013 at 8:52pm EDT
I am still waiting for the resident to start the infusion. My headache is unchanged because I am in still in LP. I’ll be able to sleep with the drain. I hope the drain does not create another leak site.
Wednesday, May 29, 2013 at 9:12pm EDT
One of the other doctors told me that they would increase the amount of fluid every 12 hours. If my headache changes from a LP headache to a HP headache to let them know. They would reduce the amount of fluid. I afraid of the drain site causing a leak. They used a 14 gauge needle because the catheter has to fit through the needle.
Wednesday, May 29, 2013 at 10:02pm EDT
I have pain but not any more than I am used to. I am allowed to have the good drugs if I want them but I don’t like the way they make me feel. If I use medical language that you do not understand, please correct me. The infusion is a diagnostic procedure. They just started the infusion. Even if he figures something out. Surgery is not clear cut. It depends on the quality of my dura, what type of cyst is leaking, where the leak is located, and how many leaks there are. Can’t assume just one leak. It’s not a quick easy fix because of rebound high pressure. Rebound high pressure has it’s own very painful 24/7 symptoms with the risk of blowing holes in you dura. I blew holes over the winter after the doctor at Duke patched me.
Wednesday, May 29, 2013 at 10:10pm EDT
I am in room 8110, one of the suites. I didn’t request it. I hope that my insurance… pays for it. The doctor just started the infusion at 2.5 cc per hour. At midnight, they will change it to 5cc per hour. I am supposed to get a myelogram tomorrow. I have not heard about the MRI with myelography from yesterday.
Wednesday, May 29, 2013 at 10:16pm EDT
I don’t know when they will let me know for sure about surgery. I could use good news…
Thursday, May 30, 2013 at 1:44pm EDT
My headache eased until about midnight, then got worse. They upped the infusion from 2.5ml to 5ml around midnight. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they put it up to 7.5. They backed it down to 5ml. I get hormonal headaches at that time of the month that overlay my postural headache. I think that I have that now. UGH.
Thursday, May 30, 2013 at 1:46pm EDT
I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.
Thursday, May 30, 2013 at 1:53pm EDT
My headache eased until about midnight, then got worse. They upped the infusion from 2.5ml to 5ml around midnight. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they put it up to 7.5. They backed it down to 5ml. I get hormonal headaches at that time of the month that overlay my postural headache. I think that I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.
Thursday, May 30, 2013 at 2:03pm EDT
Please let me know if you don’t understand what I am saying. They hooked up the CSF infusion last night and that eased my headache until midnight. They upped the infusion rate at midnight, too. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they upped the rate a second time. They lowered the rate. To complicate matters I get hormonal headaches at that time of the month that overlay my daily headache. I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my mid back, but wants to rule out that the spot is not a shadow. I hate my hormones!!!!!!!!
Thursday, May 30, 2013 at 2:26pm EDT
Sending me flowers is much appreciated! They brighten my room!
[Have you brightened anyone’s day with a random act of kindness recently?]