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My Last Picture
This is the last picture ever taken of me, by my cousin in L.A., Joie Shettler.
“On the pier at Manhattan Beach. It was a nice day and even though it was painful for her (physically) she seemed to enjoy it.” ~ Joie
Back Home Again
Thursday, July 4, 2013 at 5:44pm EDT
My cold is better but my head and back are very bad.
Thursday, July 4, 2013 at 7:48pm EDT
I feel the worst that I have ever felt. I had 4 glorious headache free days after the blind blood patch. I caught a head cold a few days after my second surgery. I emailed him about that. His only suggestion was to not hold a sneeze in, which I already knew. I believe the coughing and sneezing from the cold blew out something from the surgery or blood patch. … My cold is better but my head and back are very bad. Your question … about contrast leaking out of holes they put in your dura hiding nearby holes is an excellent question. I wonder if this is why he found ‘no leaks’ on me when I KNOW that I am leaking.
Thursday, July 4, 2013 at 8:15pm EDT
Since I don’t know how far down from T11/T12 my 13 cc of blood went, I don’t know if it covered the drain and DSM site. I feel so horrible that I don’t know what to do.
Friday, July 5, 2013 at 9:45am EDT
Thanks for asking how I am. I caught a chest cold a few days after surgery. The doctor’s only suggestion was to not hold a sneeze in, which I already knew. My cold is better, but I think the coughing and sneezing blew out something from the surgery or blood patch.
[Sadly, it did. This made *ALL OF THIS* a waste! #$@&%*!]
My head is the worst that I have ever felt. I had 4 glorious headache free days after the blind blood patch. I believe the coughing and sneezing from the cold blew out something from the surgery or blood patch, and this is why I am nearly incapacitated with this headache and other neurological symptoms now. … he wants me to wait … before doing anything so I came home.
My cousin in L. A. is a WONDERFUL person! She and her husband are very busy! Not once did they give us vibes that we were intruding. I needed home health for almost two weeks in their house. They were very supportive! She wouldn’t allow me to do (almost) anything in the house. She gave us a house key so we could go to the doctor while they worked. We used her clothes washer and dryer. We babysat their 7 and 10 year old. She didn’t entertain us or provide transportation as they have their own lives. That’s totally understandable. Bob spent a lot of his time out there working for his employer back home. We contributed toward groceries, and Bob did some house cleaning and cooking. All of this is okay because she saved us thousands on a hotel bill. I got to know them better, too. I NEVER expected this from them! Now that I know their tastes, we’ll send a surprise thank-you gift.
Friday, July 5, 2013 at 9:47am EDT
I can’t do much of anything, yet.
Friday, July 5, 2013 at 11:13am EDT
But I know this is LP, terrible LP. It’s not going to get better without a blood patch. I know my body. Waiting for a blood patch is silly when I know what helps. I can’t take pain medication for my back now because the medication makes my head hurt worse.
Friday, July 5, 2013 at 11:32am EDT
If it were easy, I would. All the doctors around here have a 6+ month wait. When a new doctor sees my medications they think I am a drug attic and that sours the relationship.
[She rarely took any as it made her headache *worse*. She was never an ‘attic’ nor addict.]
Friday, July 5, 2013 at 11:36am EDT
I have a couple pain meds but they are not all that helpful and I don’t take them regularly. New doctors get antsy when they see the list.
Friday, July 5, 2013 at 11:59am EDT
Our state has a drug data base that records each time I have a pain relieving prescription filled. Dr’s can check this to see if their patients are being honest, or I would leave it off the list.
Friday, July 5, 2013 at 4:20pm EDT
I had a hard time getting my family doctor to order that MRI [in 2012]. Even if it showed something, Dr. S could say that because surgery was only two weeks ago, the findings could have been there before surgery and not enough time has past to know if surgery will make things better.
Friday, July 5, 2013 at 4:22pm EDT
My MRI was normal I must be crazy because my tests are all normal.
Friday, July 5, 2013 at 6:42pm EDT
People can surprise us. My cousin that we stayed with in L.A. has always been on the fringes of my life. She WOW’ed me with support. I didn’t expect her to support me. I don’t think that I can ever repay her! …
Sunday, July 7, 2013 at 8:46am EDT
I came home on the 4th. Sorry, I forgot to tell you. My memory is bad. I feel awful. I think this chest cold that I developed a few days after surgery undid something the doctor did.
Monday, July 8, 2013 at 6:26pm EDT
I am in awe that my cousin and her husband were so kind and helpful. I did practically nothing in return…they would not allow me. I can never repay them for what they did for me! … I heard from Dr. Schievink, the doctor in L.A . He’s trying to get the name of a local anesthesiologist for a blood patch. A blood patch is where they take blood from your arm, and inject it into your spine.
Monday, July 8, 2013 at 7:22pm EDT
Dr. Schievink is trying to get me the name of a local anetheologist for a blood patch. I am nearly incapacitated with this headache and ear and eye symptoms. I am socially isolated at home. I have only one local person that I call a friend. She understands because she has her own health issues. No one stops to visit me. I get so lonely. We live in a rural area.
Monday, July 8, 2013 at 7:27pm EDT
I believe the chest cold that I developed a few days after surgery blew out something. I was not supposed to cough and sneeze that soon. I am nearly incapacitated from the headache and associated ear and eye symptoms.
Monday, July 8, 2013 at 7:54pm EDT
I am home. I believe the chest cold that I developed a few days after surgery blew out something. I was not supposed to cough and sneeze that soon. I am nearly incapacitated from the headache with the associated ear and eye symptoms.
Monday, July 8, 2013 at 9:41pm EDT
A gift card to the restaurant “In and Out Burger.” We don’t have that restaurant here in PA, so I ordered a gift card from their website. It should be here later this week. I will put it in a personalized Thank-You card.
[For letting Karen and I stay at Karen’s cousin house.]
Monday, July 8, 2013 at 10:55pm EDT
Because I feel so awful.
[Was asked why she was up this late.]
Tuesday, July 9, 2013 at 2:02pm EDT
Did you sleep last night? I did for about 6 hours. I can get a blood patch at UPMC in Pittsburgh. They won’t let me schedule until they receive the prescription from the L.A. doctor. The L.A. doctor said that it would be sent today.
Tuesday, July 9, 2013 at 6:09pm EDT
Dr. Schievink said that I can get a blood patch at UPMC in Pittsburgh. They won’t let me schedule until they receive the prescription from the L.A. doctor. Dr. Schievink said that it would be sent today. Scheduling in Pittsburgh said they would call after they received the prescription. I did not hear anything today. Pray that the time change is why. I will call scheduling in Pittsburgh tomorrow to see if they got it. If not, I will call Dr. Schievink’s office.
Tuesday, July 9, 2013 at 6:56pm EDT
Thanks for asking about my back. I had complications from the first surgery. I had to go back to Los Angeles for a second surgery to fix the complications. A few days after that surgery, I developed a chest cold. I was not supposed to be coughing and sneezing so soon after surgery. I think I tore something open from the surgery, or tore open another hole in my dura from my low intracranial pressure symptoms.
Massive headache, loss of hearing, pressure in ears, blurry vision, dizziness, and nausea. These symptoms all improve lying down, a big tip off that they are related to intracranial pressure. When they added artificial spinal fluid at Duke and Cedars, all these symptoms went away, the second big tip off that the symptoms come from intracranial pressure. I am working on scheduling a blood patch in Pittsburgh in an attempt to avoid another trip to Los Angeles for more surgery.
Tuesday, July 9, 2013 at 7:22pm EDT
Unless someone else has our health problems, they don’t understand what we go through. We can tell them, but they truly don’t understand unless they experience it for themselves. I can’t truly understand what you go through, just as you can’t truly understand what I go through…
Tuesday, July 9, 2013 at 7:42pm EDT
I saw a psychologist for a while before I was diagnosed. She made me feel like the problem was all in my head. At that time, I exercised regularly which took away one of her primary tools.
She frustrated me further by insisting that I do things that I physically cannot do. She said things like “I practice sick behavior for attention.” I have an accurate diagnosis now, but the scars from therapy are still there.
Tuesday, July 9, 2013 at 7:48pm EDT
I would not mind seeing one again [psychologist] IF they were knowledgeable about chronic cerebral spinal fluid leaks. Very few medical doctors are knowledgeable about that so that’s why I went to Los Angeles. Finding a counselor would be just as, if not harder, than finding a medical doctor. The standard therapy like “get out and socialize”, meditation, visualization can be but are not always helpful with chronic cerebral spinal fluid leaks.
Tuesday, July 9, 2013 at 10:43pm EDT
Dr. Gray recommended a doctor at UPMC in Pittsburgh last fall, but I did not follow up. I called there today, and they told me that it would be the physician’s assistant that does it. So yes, that makes me a little nervous. Dr. Schievink called and spoke with the doctor Dr. Gray recommend and told him the specifics of my case. Dr. Schievink’s office was supposed to fax the order for a blood patch today. The folks in Pittsburgh told me they would call after they received the prescription. They did not call today, but then again CA is 3 hours behind us. I will follow up tomorrow to see if they received it. If not, I will call Dr. Schievink’s office. … You could have symptomatic Tarlov csyts. They can be asymptomatic, too. Say you have Tarlov cysts, just because you have pain does not mean the cyst is the source of pain. The cysts may or may not be the source of your pain. The cysts themselves could be asymptomatic and your pain coming from a different source.
Tuesday, July 9, 2013 at 10:46pm EDT
I emailed Dr. Gray about what was going on now. She said she would see me, but I’m thinking maybe Dr. Schievink’s version of a blood patch may be better. … I don’t want to travel 10 hours to NC if I can get treated with a 1 and 1/2 hour drive to Pittsburgh.
[Not wanting to travel turned out to be fatal mistake.]
Tuesday, July 9, 2013 at 11:00pm EDT
[LA Resident] did a full volume patch. I know you had an issue with those, but he was conservative based on Dr. Schievink’s orders. He did one at T11/T12. He would have injected 20cc of blood, but I could only stand 13cc. After lying for 4 hours, I still had LP. The following day, I had neither HP nor LP. The next couple days I had slight HP. I’m thinking that it was not the extra volume in my epidural space that made me feel better because it took a day for my pressure to rise. The relief would be immediate if it was a volume issue. Because I did not have extremely HP to blow the patch, I believe the coughing from my chest cold blew it.
Wednesday, July 10, 2013 at 8:13pm EDT
I followed up with Dr. Schievink’s office today about have a blood patch in Pittsburgh. … The folks in Pittsburgh tell me that I should be able to schedule a blood patch tomorrow. We’ll try this before flying back to L.A. All the coughing undid something. Many of the symptoms that I’ve told you about are back. I’m on another involuntary crash diet from extreme nausea.
[She was down to 165 pounds when she died.]
I tried a few prescription medications, activated charcoal, and ginger. None worked. The only thing that helps is lying down. ARG I do not like lying around. I want to move! Moving is good mentally. I think my history with systemic tendonitis issues could be related. Maybe I have an underlying undiagnosed connective tissue disorder that weakened my tendons and dura.
Wednesday, July 10, 2013 at 11:56pm EDT
I’d like to stay home but we will do whatever it takes. It is expensive. When symptoms become bad enough, I don’t have a choice but travel to the best doctors. We were in L.A. from 5/26 to 7/04 minus the 3 days we were home between flights. We spent most of April and the first part of May in North Carolina. After being a frequent flier (gotta add a little humor) in physical therapy with various tendonitis issues, I learned what worked best for self management. Tendonitis in the early stages has a pain that is distinct from all other pain. I had tendonitis in multiple sites in my upper and lower body. Tendonitis in my lower body is more devastating. I had bilateral peroneal, bilateral posterior and anterior tendonitis all at once. Since had to walk and could not give them adequate rest, they healed as tendonosis, a degenerative condition. I had custom ankle foot orthotics in my shoes to take the stress off those tendons. When my tendons flare, I’ll wear the braces indoors and outdoors. I don’t wear them full time any more than necessary, or my ankle muscles get weak and I lose range of motion. The braces are a catch 22. They have a hinge but have no side-to-side motion that wrecks havoc on my knees and hips. That’s the story behind the ankle/foot orthotics that you saw in my shoes.
Friday, July 12, 2013 at 6:58pm EDT
[Talking of insurance.] The decision makers need to spend a week in our shoes. I bet they would have empathy for us and change their decisions. … It’s easier to get disability through your employer, if you worked for one of those because they are not covered by the (E)mployee (R)etirement (I)ncome (S)ecurity (A)ct. Pretty much all other disability insurance through your employer is governed by that. ERISA is anti-clamiant and pro-insurance company. Nearly everyone is denied, and the ones that are initially granted are constantly harassed with paperwork!
Saturday, July 13, 2013 at 1:46pm EDT
I feel down most days. I spend all day every weekday by myself. No one comes to visit, and I rarely get a phone call unless it is from my Mom. My life has been like this for years. Low pressure prevents me from getting out and meeting people, becoming friends and doing things together.
Saturday, July 13, 2013 at 2:13pm EDT
I know what you mean about being treated like we are nuts. I don’t see my PCP very often, or I’m sure they would feel the same way about me. I’ve dealt with this severe daily headache for 24 years. VERY FEW people believe that severe pain can last that long.
Saturday, July 13, 2013 at 2:19pm EDT
Part of me thinks patching may work. The other part of me thinks Dr. Gray’s patches never held long-term
[For reasons like travel, me having to go to work, and some yet unknown reason that needs to be studied, which is what I hope the autopsy finds, etc.]
For the rest of the day after the blind patch at Cedars I had LP. The second day I had neither LP or HP. The 3rd and 4th days I had slight HP that I took Diamox for. The 5th day I was back in LP. I think my coughing blew the patch rather than HP because HP was only slight. I have no physical support at home after surgery or patching, other than my husband. I don’t have local friends and my family thinks that I am nuts. If I say too much to others, I sound like I’m a complainer. If I say very little, they think that I can’t be as sick as I am. I can’t win.
Sunday, July 14, 2013 at 7:14pm EDT
I go to Pittsburgh on Friday for another blood patch. They take blood out of my arm and inject it into my spine. I had this procedure done in L.A. but the coughing and sneezing from the cold blew the patch. My cold is better. I had my stitches out last week. I move around as much as I can. Having two major surgeries last month and catching a cold took all my energy.
Sunday, July 14, 2013 at 8:08pm EDT
The best time to call me is weekdays between 8am and 4:30pm. I prefer to talk when my hubby is not here. If he hears me, we don’t argue over what he heard. It’s more like he doesn’t understand how females communicate.
I can identify with what you say about ‘friends’ close to you making comments that sound like they don’t get it like “You look good today.” They don’t see how you crashed before you went out and how you will crash when you go back home. … I think people don’t ask how we are doing because they think only of themselves. I always try to ask people how they are doing so I don’t focus so much on myself. If someone always finds fault in you, (if you can help it) don’t speak with them as often. I’ve said the same thing, if people could be in our shoes for a few days, maybe they would get it. … I don’t know how to make new friends when I can’t make plans. I don’t know for sure how I will feel on a given day.
When I was in L.A. My cousin’s husband told their children not to judge people. I thought that was great. On the other hand, they had such positive attitudes that I was not comfortable discussing my fears over my illness with them. They were not like that on purpose. Like anybody else that has not been through what we have, they didn’t know any better.
Sunday, July 14, 2013 at 8:42pm EDT
I get a blood patch on Friday in Pittsburgh. I had the stitches taken out. My back pain now feels like muscular pain from not moving. I force myself to move, but with two major surgeries last month, fighting off my chest cold and this headache with the neurological symptoms that go with it, I am exhausted. I have my fingers and toes crossed that this blood patch will provide long-term relief. I am happy that you got to go out with the girls this weekend. Setting aside time to do your own thing is refreshing!
Sunday, July 14, 2013 at 9:16pm EDT
I cannot put into words what 24/7 severe physical pain does to a person… ‘It’s very socially isolating!!’
Now add the daily neurological symptoms, eye issues, hearing issues, face burning, dizziness, and nausea. These symptoms change throughout the day.
I go to Pittsburgh on Friday for another blood patch. They take blood out of my arm and inject it into my spine. I had this procedure done in L.A. but the coughing and sneezing from the cold blew the patch. My cold is better.
I had my stitches out last week. I move around as much as I can. Having two major surgeries last month and catching a cold took all my energy. I get exhausted very easily.
Monday, July 15, 2013 at 11:53pm EDT
Today was 4 weeks post op from my second surgery. Two major surgeries last month and that cold left me exhausted. I should be starting PT now, but I won’t do that for a while after a blood patch.
Tuesday, July 16, 2013 at 12:00pm EDT
… I found, “Targeted CT Guided Epidural Blood Patch for Treatment of Spontaneous Intracranial Hypotension due to Calcified Intradural Thoracic Disc Herniation” … I hope that this is a good sign. I am getting a blind blood patch.
Tuesday, July 16, 2013 at 3:58pm EDT
I saw your message on the board about being quiet because you’re anxious, very depressed, etc. That’s why I am being quiet, too. I had two surgeries by Dr. Schievink and feel no better. Other than Bob I have no support here at home. I spend all day alone everyday. Is this ever going to end? On Friday at UPMC, I am getting a blind blood patch. [UPMC doctor] is who is supposed to do it. I found on PubMed that he is a co-author of “Targeted CT Guided Epidural Blood Patch for Treatment of Spontaneous Intracranial Hypotension due to Calcified Intradural Thoracic Disc Herniation” published in March this year. He wants to see my imaging studies from Cedars. He does not want the report. None of the other articles he published are related to leaks.
Tuesday, July 16, 2013 at 4:34pm EDT
If you talk to anyone around you, they think you’re crazy or they act like you are bothering them. My hubby leaves the house at 6:30am and gets home at 5:30pm five days a week. One thing that concerns me is Cedars had me lie with my head lower than my body for an hour followed by three hours flat on my back. The nurse said that I would not lie with my head lower than my body. I would lie 3 hours flat on my back, though. I want the face down time.
Thursday, July 18, 2013 at 11:05am EDT
I feel awful. Pressure in ears, hearing loss, blurry vision, nausea, dizziness. All are worse when upright. I don’t know if my blood patch tomorrow will be CT guided.
Thursday, July 18, 2013 at 2:29pm EDT
Doctors tend to self treat their own mental illness. They don’t want a colleague to treat them. They are afraid of losing their licenses, if they admit they are sick.
Thursday, July 18, 2013 at 2:34pm EDT
That’s the kind of doctor that I like to see. One that admits their own weaknesses.
Thursday, July 18, 2013 at 7:28pm EDT
I am getting a blood patch done locally here in PA tomorrow.
Thursday, July 18, 2013 at 7:56pm EDT
If my memory is correct and it may not be, did you say several months ago that the POINTE [A place for those with mental health issues to get together in Oil City PA.] was going to start having classes on relaxation? Did that start? [See Aug. 5 and 9 below.]
Friday, July 19, 2013 at 9:36pm EDT
[UPMC Doctor] injected 30cc of blood at L2/L3 under fluoroscopy about 1:30 today. HP began about 7:30 tonight. I took one half of a 250 Diamox which relieved it. The doctor thought that I was complex case. They will do directed blood patches there if they know the site of the leak. They do not do glue patches. Normally they have you lie 2-3 hours flat on your back after a patch. I requested the first hour that I be face down with my head lower than my feet like I was at Cedars for the first hour. Which they allowed. The nurse told me to lie down as much as possible for the next 4-5 days, no strenuous activity and to ease slowly back into things.
Friday, July 19, 2013 at 9:41pm EDT
One thing different that they did here which I liked was during the injection tilt the table so my head was lower than my feet when I said that I was feeling the pain/pressure going down my left leg. Tilting the table removed that pressure/pain and allowed them to inject more blood. Cedars nor Duke tilted the table during the patch.
Friday, July 19, 2013 at 9:46pm EDT
I did not have HP until about 6 hours after the patch. The Diamox helped. That’s how I know this is HP now.
Friday, July 19, 2013 at 9:50pm EDT
All that adrenaline could change your chemistry and the way you respond to medication. We are all different, and react differently to medication.
Friday, July 19, 2013 at 9:57pm EDT
Thanks. The doctor thought that I was complex case. They will do directed blood patches there if they know the site of the leak. They do not do glue patches. Normally they have you lie 2-3 hours flat on your back after a patch. I requested the first hour that I be face down with my head lower than my feet like I was at Cedars for the first hour. Which they allowed. The nurse told me to lie down as much as possible for the next 4-5 days, no strenuous activity and to ease slowly back into things.
Friday, July 19, 2013 at 10:02pm EDT
Will he mistake leaks as Chiari? Who knows whether you have leaks causing your Chiari, true chiari without leaks, or true chiari with leaks. Did I confuse you?
Friday, July 19, 2013 at 10:03pm EDT
They do not do surgeries there [UMPC], so I may need to go back L.A. if this doesn’t work. Thanks for your prayers. I need all that I can get. Only other leakers understand.
Friday, July 19, 2013 at 10:09pm EDT
I had the blood patch today. It immediately relieved the headache, blurry vision, ear issues, nausea, dizziness as the procedure usually does. I am supposed to lie down as much as I can for at least the next week then slowly ease back into things. No bending, lifting and twisting. The last three things I haven’t been allowed to do since surgery, anyway.
Friday, July 19, 2013 at 10:20pm EDT
My newer washer uses less water but pulls and stretches the clothes more. What does that save? Replacing clothes sooner can’t be good for the environment either.
Friday, July 19, 2013 at 10:24pm EDT
My washer only fills a tiny amount for the rinse cycle. It doesn’t matter how large the load of clothes is. All sizes of loads get the same small amount of water.
Sunday, July 21, 2013 at 2:07pm EDT
I woke up this morning with an excruciating headache which is usually indicative of rebound too high intracranial pressure. Too high or pressure should feel better when I’m upright. Medication to lower the pressure had no effect neither does my position up or down. I’m not sure what this means.
Monday, July 22, 2013 at 1:03pm EDT
I had a FV blood patch at L2-L3 in Pittsburgh Friday. HP began about 8 hours later. Right now 1-2 Diamox 250mg during the day control it, but I am not being very active. ... At bedtime One Diamox 500ER works better than the 250s but I still wake up with a headache. I emailed Dr. Schievink about this a little bit ago. Last fall, when I was successfully sealed for 4 months, the amount of Diamox that I take now controlled HP when I was inactive, but when I increased my activity I needed more. HP got so bad that 3000mg of Diamox and 100mg of HTCZ did not control it. Dr. Gray had to put a 20 gauge hole in my dura and still need Diamox at a lower dose. I am taking it as easy as I can. I spend a lot of time lying down. Do you get the pain in your low back when the headache comes on, or is it there at other times? How does Dr. Schievink do a trial run for the Port-a-Cath.
Monday, July 22, 2013 at 1:09pm EDT
I had a FV blood patch at L2-L3 in Pittsburgh Friday. HP began about 8 hours later. Right know 1-2 Diamox 250mg during the day control it, but I am not being very active. ... At bedtime One Diamox 500ER works better than the 250s but I still wake up with a headache. I emailed Dr. Schievink about this a little bit ago. Last fall when I was successfully sealed for 4 months, the amount of Diamox that I take now controlled HP when I was inactive but when I increased my activity I needed more. HP got so bad that 3000mg of Diamox and 100mg of HTCZ did not control it. Dr. Gray had to put a 20 gauge hole in my dura and still need Diamox at a lower dose.
Monday, July 22, 2013 at 6:10pm EDT
My vision and hearing are fine. They were not fine prior patch. Very low pressure makes it hard for me to hear, and gives me blurry vision.
Previous experience taught me that HP does not affect my ears. HP doesn’t cause blurry vision. I get black areas of vision that progress to moments of complete blindness if pressure goes too high.
Monday, July 22, 2013 at 6:17pm EDT
In December, my pressure got too high despite 3000mg of Diamox and 100mg HCTZ, Dr. Gray put in a hole with a 20 gauge needle. In February, I thought I had too high of pressure and was on 3000mg of Diamox again. When Dr. Gray did a pressure check, my pressure was too low, so I have been fooled into believing that I had HP when it was LP.
Monday, July 22, 2013 at 9:05pm EDT
I put on my binder and my head got worse, so it is HP. I am not being active. I am up to 1000mg of Diamox per day. Apparently, that’s not enough. Last fall it took me 5 weeks to make it to 3000mg. It’s been 3 days and 1000 is already not enough. This makes me nervous.
Monday, July 22, 2013 at 9:17pm EDT
For me, HP being this bad so soon is bad. I am not being active. I am up to 1000mg of Diamox per day. Apparently, that’s not enough. Last fall it took me 5 weeks to make it to 3000mg and that did not control the HP. Dr. Gray had to put a hole in my dura. It’s been 3 days and 1000 is already not enough. This makes me nervous.
Monday, July 22, 2013 at 10:11pm EDT
I had my blood patch Friday. I had several headache-free hours after that. Then a rebound intracranial hypertension headache began. On Saturday, I started Diamox 1000mg daily to lower my intracranial pressure. I had a headache part of yesterday and all day today. I was not sure if it was a low or high pressure headache. To tell the difference, I put on my binder. My headache got worse, so it’s rebound intracranial hypertension even with 1000mg of Diamox. Last fall when my dura was successfully sealed, it took five weeks to reach the maximum daily dose of 3000mg of Diamox which still did not control my rebound intracranial hypertension. It’s been 3 days and 1000 is already not enough. Increasing the dose this fast makes me nervous… I had many symptoms when 3000mg of Diamox did not control my rebound intracranial hypertension. The most serious one was inflamed optic nerves. If you have intracranial hypotension or too low intracranial pressure for a long period of time like I have, your brain compensates by making extra cerebral spinal fluid. Patch any holes, your brain still makes extra CSF which causes rebound intracranial hypertension. Usually that is controlled with medication until your body learns that it doesn’t need to make as much. As a last resort, they put a shunt in your head.
Tuesday, July 23, 2013 at 9:34am EDT
I went too far in the other direction from intracranial hypotension to hypertension. Unfortunately, I have a history of that. The hypertension can and does blow blood and glue patches and blow additional holes putting me back into intracranial hypotension.
Wednesday, July 24, 2013 at 6:09pm EDT
It’s been a long battle. I didn’t know for 23 years why I had a headache every time I was upright that went away when I lied down.
I finally received an accurate diagnosis at Duke University in North Carolina last year, chronic cerebral spinal fluid leaks. Keeping the leaks sealed is a real challenge. So far, nothing has kept them sealed for long term, or new leaks pop up when an older leak is sealed.
Wednesday, July 24, 2013 at 9:58pm EDT
The longest that I was successfully patched for was 4 months. Last October through mid-February.
Wednesday, July 24, 2013 at 10:16pm EDT
I took a 250 Diamox two hours ago, and another one, one hour ago. my face no longer burns. I’m concerned about how quickly I am titrating the dose to control HP. I am up to 2000mg daily, and I only had the blood patch Friday. Last fall it took me 5 weeks to reach 3000mg daily, and that did NOT control HP. I had to go to Duke and have a 20 gauge hole put in my dura.
Thursday, July 25, 2013 at 2:49pm EDT
I am miserable with HP. I know it’s HP. I put my binder on VERY gently so I didn’t stress my dura too much. My headache got worse.
Thursday, July 25, 2013 at 3:39pm EDT
The blood patch put me into rebound intracranial hypERtension. I went too far in the opposite direction from too low to too high of pressure. This is an expected complication, and can last for up to a year even with medication, salt restriction, and lowering my activity level.
It’s still very painful and just as disabling as low pressure.
I can’t do more than walk to my mailbox. No walking in the yard. No walking in stores. No grocery shopping, etc.
Last winter I was sealed for 4 months and the rebound intracranial hypERtension blew additional holes in my dura.
Some people simply have poor quality duras that are prone to developing holes and disabling headaches no matter what. I think I am one of these people.
Thursday, July 25, 2013 at 5:50pm EDT
I am back on Die in a Box [A prophetic reference to Diamox]. 1000 mg wasn’t enough. I’m not sure 1500mg is either.
Thursday, July 25, 2013 at 5:51pm EDT
I am positive that I was in LP prior to this last blind blood patch in Pittsburgh. I am in high pressure, now.
Thursday, July 25, 2013 at 6:29pm EDT
I haven’t forgotten about coming back to the Y. I’ll be back one of these years whenever my health allows.
[Karen loved swimming at the YMCA. She never returned. ]
Thursday, July 25, 2013 at 6:44pm EDT
It will happen. Things are fraught with complications. Chronic CSF leaks, multiple surgeries to fix these. Rebound intracranial intracranial hypERtension blowing more holes in my dura putting me back into intracranial hypOtension. I had two surgeries alone last month in Los Angeles for this. Yes, I live in PA but that is where the leader in the field of chronic CSF leaks works.
Thursday, July 25, 2013 at 7:04pm EDT
Before I had to stop coming to the Y, I think I spoke with you about intracranial hypotension. You mentioned something about having a blood patch for a bad lumbar puncture that immediately took away the pain. Blood patches work great, if given early. If there is months or years of delay between symptoms and treatment, your body tries to increase the pressure on it’s own by making extra spinal fluid. Patch the holes in your dura, your body continues to make extra spinal fluid putting you in intracranial hypERtension and blowing more holes in my dura. There is medication to help control this, but it’s not perfect.
Thursday, July 25, 2013 at 7:05pm EDT
The pain for intracranial hypotension or hypertension is out of this world. Strong pain relievers do not work on either.
Thursday, July 25, 2013 at 7:08pm EDT
… [Doctor] said to increase Diamox but didn’t say what to. I figured he didn’t know. I tried 1500mg yesterday. I am still in LP today. I tried to LOOSELY put on the binder and that made it worse. I don’t want to put on the binder tightly and blow more holes.
Thursday, July 25, 2013 at 7:11pm EDT
I can be up for short times. One of the side effects of Diamox is a headache.
Thursday, July 25, 2013 at 7:13pm EDT
My back pain isn’t bad it’s my neck and head. My head is about a 7-8. Upright and lying down.
Thursday, July 25, 2013 at 8:09pm EDT
I need to titrate up Diamox way faster than I like. I am at 1500mg already. I am going to try to transition myself over to the time released.
Thursday, July 25, 2013 at 8:28pm EDT
It wasn’t an easy 4 months. At 5 weeks, I maxed out on 3000mg of Diamox and HP was not controlled. My optic nerves began to swell. Dr Gray had to put a 20 gauge hole in my dura.
Thursday, July 25, 2013 at 8:47pm EDT
Because I leaked for so long, I don’t have healthy friends that I can rely on for help, either.
Thursday, July 25, 2013 at 9:45pm EDT
I don’t know how I hold on either. Believe me I have many down days… The patch that I had at Cedars 13cc at T11/T12 gave me slight HP for 4 days but the coughing from the cold blew it. I am afraid that I am on my way to such high rebound HP now. But the LP was so bad that my vision was so bad that I could not drive, and I felt that I lost nearly half my hearing. At Pittsburgh, they did 30cc at L2/L3. I wish that I would have insisted on 13cc at T11/T12.
Thursday, July 25, 2013 at 9:47pm EDT
I am definitely in HP. I tried to LOOSELY put on my binder. It made things so much worse. The patch that I had at Cedars 13cc at T11/T12 gave me slight HP for 4 days but the coughing from the cold blew it. I am afraid that I am on my way to such high rebound HP now. But the LP was so bad that my vision was so bad that I could not drive, and I felt that I lost nearly half my hearing. Those are back now. At Pittsburgh, they did 30cc at L2/L3. I wish that I would have insisted on 13cc at T11/T12.
Thursday, July 25, 2013 at 10:37pm EDT
But the lumbar drain and 18 gauge needle for the DSM were at L2/L3, so I thought that was a good idea at the time.
Saturday, July 27, 2013 at 6:32pm EDT
Either Diamox, or my too high intracranial pressure, or both, give me brain fog and I don’t always make sense, if I am not extra careful.
Saturday, July 27, 2013 at 7:16pm EDT
Either Diamox, or my too rebound high intracranial pressure, or both, give me brain fog. All the post surgical instructions of no bending, twisting, and lifting will remain in effect as long as I have rebound too high intracranial pressure. They estimate that can last for up to a year. Last winter, I began leaking after being sealed for 4 months.
Saturday, July 27, 2013 at 8:25pm EDT
I feel the patch helped. I am very afraid of moving the wrong way and blowing out something. I was patched for 4 months over the winter. I’ve been patched for a week this time.
Saturday, July 27, 2013 at 8:39pm EDT
For people that avoid others when they are sick, karma will be around.
Sunday, July 28, 2013 at 4:31pm EDT
I am not sitting too much because I don’t want to put a lot of pressure on the surgical site at L4/L5. … I feel the BP helped more than the surgery.
[Due to the chest cold?]
Monday, July 29, 2013 at 1:31pm EDT
I feel a bit of HP. All my muscles are becoming sore and tight from not moving enough. I wasn’t moving much prior to surgery because LP was so bad. I couldn’t move much after surgery, and I shouldn’t move much after the BP. … We need to talk more often. Talking with someone that understands is like a breath of fresh air.
Monday, July 29, 2013 at 7:12pm EDT
My husband does it all. I feel bad for him. He works all day, and comes home to work more. It makes me feel awful.
Tuesday, July 30, 2013 at 2:46pm EDT
My blood patch will be two weeks ago Friday. I take 2000mg of Diamox and feel like I need an increase again.
I am scared.
Last Fall it took me 5 weeks to reach 3000mg of Diamox which was not enough to control my HP. I had to make an urgent trip to Duke for Dr. Gray to put a 20 gauge hole in my dura. I am on track to max out at 3000mg of Diamox way before 5 weeks this time.
The side effects of Diamox include headache and tinnitus. My tinnitus is pretty bad right now. I wonder how much of my tinnitus comes from Diamox. How much does Diamox contribute to the headache? I know my eyes being pushed out out my head is clearly HP, and I can tell when it’s time for more Diamox.
Wed, Jul 31, 2013 at 3:16pm EDT
[I asked her if she contacted the doctor via email, her response:]
Subject: Re: Sent doctor message?
No. The pressure doesn’t feel as high today. I hope that I did not spring a leak.
Friday, August 2, 2013 at 1:25pm EDT
I’m confused with mine. Sometimes I think I feel worse when I take no Diamox and other times I think I feel better with it. This has been since Tuesday when I had very HP and I think something blew.
Friday, August 2, 2013 at 5:39pm EDT
Caffeine had a minor positive effect yesterday. I haven’t tried it today.
Friday, August 2, 2013 at 6:26pm EDT
My day isn’t all that nice. My rebound high intracranial pressure went very high and blew some of the patch on Tuesday night/Wednesday morning.
Friday, August 2, 2013 at 9:45pm EDT
Rebound HP blew the patch. I am in LP.
I am depressed from this.
2000mg of Diamox per day was not enough. …
I’ve been feeling bad too, which is why I haven’t written much.
Friday, August 2, 2013 at 10:49pm EDT
Right. If the doctors would only listen to us. We know our own bodies. I wonder if I have underlying HP that blows leaks. All the scans at Cedars were normal. I would think that they would show something but they didn’t. Maybe my family is right and I am crazy and make this stuff up for attention.
Saturday, August 3, 2013 at 12:18am EDT
[Someone writes to Karen:]
… I guess I am confused as to why you are surprised with HP. Isn’t the dural reduction surgery for a chronic leaker, whose leak can’t be found and it is a surgery where you know the leak will continue, but you decrease CSF volume space so you get more upright time each day. It doesn’t cure leak or let you resume a completely normal life. It is just to give you a little better quality of life.
So if you have less CSF space to fill volume wise and you do a blood patch to seal off the leak. You are still producing the same amount of CSF, it just has less space to go. So it makes perfect sense to me that you would have HP that is more extreme than before. Don’t see how there could be any other outcome. I don’t see why you would go the route of sealing off the small leak when you have less volume to fill and a history of HP with successful patching. Seems to me once you reduce the dural size/volume space you are facing even bigger problems if you ever do seal off the leak completely. I thought it was one or the other (dural reduction, or try and seal leak, not both).
I know we all choose our own paths with this crappy condition and everyone’s path leads them a little differently; there is also a lot of trial and error involved on the parts of the physicians and patients.
Didn’t Dr. Gray suggest a FVBP. Didn’t you end up where Dr. Gray suggested. Do you have plans for what you are going to do next?
Saturday, August 3, 2013 at 12:31am EDT
I sincerely hope that you do not blow out any patches from your bad week.
Thank you for your long well thought out message. What you’re saying about dural reduction and sealing off leaks is accurate. I had complications from surgery. The first surgery with Dr. Schievink in June left me with a huge CSF leak that required additional surgery two weeks later. Just days after the second surgery, I caught a cold. I was not supposed to cough and sneeze that soon. I blew something open. Only this time, I do not have the big CSF lump on my back. This is the reason for the blood patches.
I’ll probably get another blood patch in Pittsburgh. Dr. Scheivink wants me to pretreat with Diamox.
Saturday, August 3, 2013 at 11:31am EDT
I’ve had many patches of the ones that stuck (many did not) HP blew them out even on high doses of Diamox, HCTZ or Topamax. Every time my pressure was checked it was normal. At what point do I give up on treating this thing? I’m not getting anywhere. Patches help temporarily. I can’t imagine Dr. Schievink wanting to do anything else since I just had surgery in June.
Saturday, August 3, 2013 at 2:48pm EDT
… She said before she had her leak, she doubted the claims of people with chronic illness. She doubted that they could be as sick as they claimed. Several others responded and said they felt the same way before their leak. We get such obstacles thrown into our path of living a normal life. I wish people could see how much will power it took us to deal with the obstacles instead of condemning us.
Sunday, August 4, 2013 at 2:12am EDT
My rebound intracranial hypertension blew the blood patch. I am back in intracranial hypotension. Dr. Schievink will order another blood patch in Pittsburgh next week. I have a high pain tolerance. I try to remain positive. However, the pain level with these headaches is consistently so high that it stretches my ability to cope… Spinal headaches are resistant to Schedule 2 pain medications. I read that, and tried several myself. They don’t work.
Monday, August 5, 2013 at 8:22am EDT
When my intracranial pressure is controlled like it was at Cedars with the 2-3 day infusion, and at Duke I feel great! We know the pain and neurological symptoms are pressure related.
Monday, August 5, 2013 at 9:22am EDT
Ahh..not having hope…what a familiar feeling, unfortunately.
LP is back as bad as it ever was. Eye and ear problems, a horrendous headache...well you know that drill Sorry that you don’t have hope.
All these failed blood patches, no supportive family other than my husband, not having success with Dr. Gray or Schievink makes me feel like throwing in the towel.
Dr. Schievink wants me to get another BP but premedicate with a high dose of Diamox prior to the blood patch. I know how sick taking a small dose of Diamox is when I am leaking. I can’t imagine how sick a large dose will make me.
Monday, August 5, 2013 at 10:00am EDT
[I don’t understand why some get fixed…viola…and other’s don’t.]
I don’t either. I feel like it is all me. Like I make this crap up for attention or something. This time it was extremely HP that blew the patch.
Monday, August 5, 2013 at 10:18am EDT
I am physically alone everyday. That makes me lonely. No one local understands.
Monday, August 5, 2013 at 10:25am EDT
Depression is nothing to be ashamed of. I have not found any good medication for my depression.
Monday, August 5, 2013 at 11:05am EDT
I got sick 24 years ago. At that time I was 20 years old. A waitress and loved it! I tried my hardest for a couple years to continue work but was unable to.
Monday, August 5, 2013 at 11:13am EDT
I think the physical pain causes depression. In my opinion, doctors treat depression which may or may not help the physical pain. When treating depression doesn’t help the physical pain they give up on us. Chiari can be treated. Then there’s the issue of CSF leaks.
Monday, August 5, 2013 at 11:20am EDT
Chiari can be treated with surgery. Sorry, I don’t know of any medications to avoid for depression and anxiety. Everyone is affected differently by different medications.
Monday, August 5, 2013 at 11:46am EDT
On the CSF forum, many people get fixed and don’t come back to post. With a few exceptions, only people that experience continued significant problems continue to post. The Chiari forums would be the same way. Only those that continue to have significant problems after treatment stick around.
Monday, August 5, 2013 at 11:53am EDT
The people that get help from Chiari surgery, for the most part, do not stick around on the forums. Only people surgery did not help stay around.
Monday, August 5, 2013 at 12:35pm EDT
I am so down from yet another BP failing. It failed from HP which makes me think dural reduction surgery was waste. Making my dura smaller makes HP worse. My vision isn’t clear, my hearing isn’t as good as normal, the headache is horrendous, I can’t eat, and all the other symptoms LP gives me. I don’t know what’s happening with me anymore.
Monday, August 5, 2013 at 5:49pm EDT
I feel awful. I am so down from yet another BP failing. It failed from HP which makes me think dural reduction surgery was waste. [Due to the cold.] Making my dura smaller makes HP worse. My vision isn’t clear, my hearing isn’t as good as normal, the headache is horrendous, I can’t eat, and all the other symptoms LP gives me. I don’t know what’s happening with me anymore. Dr. Schievink wants me to get another BP but premedicate with a high dose of Diamox prior to the blood patch. I know how sick taking a small dose of Diamox is when I am leaking. I can’t imagine how sick a large dose will make me. I’ll have the BP in Pittsburgh.
Monday, August 5, 2013 at 7:06pm EDT
I don’t have a date, yet. My rebound spinal fluid pressure got too high and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication. Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.
Monday, August 5, 2013 at 7:07pm EDT
I don’t have a date, yet.
My rebound intracranial pressure got too high and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication.
Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.
Monday, August 5, 2013 at 7:14pm EDT
I don’t know when I will be back to the Y.
My rebound intracranial pressure got too high again and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication. Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.
I needed the blood patches because of complications from the two surgeries.
How are things with you and the Y?
Tell everyone there that I said hello.
Karen
[Someone at the YMCA told me today that Karen is still being missed there, months after her death. In 2016 she is still thought of there.]
Monday, August 5, 2013 at 8:27pm EDT
I originally planned to come to the open house at the POINTE tomorrow. Unfortunately, my rebound too high intracranial pressure blew the patches which put me back in too low of intracranial pressure. The pain and neurological symptoms from too high or too low intracranial symptoms is horrendous. No pain medication helps. Going to try a blood patch in Pittsburgh before going back to Los Angeles. I don’t know when that will be scheduled. Is there supposed to be a DBSA meeting tomorrow night?
Monday, August 5, 2013 at 11:16pm EDT
It was the rebound high intracranial pressure that blew it.
Blood patches have the same restrictions as after surgery. No bending, twisting, and lifting (makes it hard to do my activities of daily living).
Normal healing times do not apply for surgery or blood patches for chronic CSF leaks.
The restrictions stay in place for as long as rebound high pressure lasts which is up to a year after the last successful patching.
Monday, August 5, 2013 at 11:49pm EDT
For my first blood patch at UPMC Presbyterian in Pittsburgh, I saw the most experienced neuroradiologist in CSF leaks. … He was not familiar with a couple tests that I had, digital subtraction myelogram, or an MRI with myelography. He was not familiar with the surgery that I had, either. They do blood patches under fluoroscopy.
They do not do fibrin glue patches that Duke and Cedars do. I’ll get blood patches in Pittsburgh under the direction of the doctor at Cedars, but for anything else I will go to Duke or Cedars. This is my health so I want to go to who has the best equipment and experience! Rebound high intracranial pressure blew the last blood patch.
I knew I was in trouble when I was on a very high dose of Diamox, and walking 30 feet in my house increased the pressure and pain to an intolerable level! The plan for this blood patch is to pre-medicate with a high dose of Diamox prior to the patch. Knowing how sick a tiny amount of Diamox makes me when my intracranial pressure is low,
I don’t looking forward to this. Brains do not like the sudden shifts between high and low pressure!!!!!!!
Tuesday, August 6, 2013 at 2:33pm EDT
This illness causes stress and tension in relationships with others. It’s frustrating!!!
Tuesday, August 6, 2013 at 2:47pm EDT
Lack of help after surgery is a problem…No one helped me other than my hubby and he works 50+ hours a week.
Tuesday, August 6, 2013 at 6:00pm EDT
[I come home from work. I go to get Garth’s leash out of the drawer that it is kept in. Nick’s leash is on top of Garth’s. This should not be here. I thought that I should ask Karen about this, but never did. A regret that I will have the rest of my days. ]
Tuesday, August 6, 2013 at 9:03pm EDT
I feel terrible. LP is very bad! My head and face burn. The headache is bad lying down, but much worse upright. I spend most of my time in bed. We have bricks under the feet of the bed to help CSF stay in my head, and I still have a headache! When I am upright, my vision and hearing get funny. I am dizzy if I move my head in the wrong way. I am nauseated. It’s worse when I am upright. The only thing that helps is lying down. In the past, I tried a couple medications, activated charcoal, and ginger. None of those work on my nausea. When I am sealed, Diamox and HP kill my appetite. This is not a healthy way to lose weight.
Tuesday, August 6, 2013 at 9:04pm EDT
My heart has racing spells. I think that has to do with LP and nerves.
Tuesday, August 6, 2013 at 9:29pm EDT
I think my body makes too much CSF. HP gets out of control and blows patches. I couldn’t even walk 30 feet without HP the day the patch blew.
Tuesday, August 6, 2013 at 9:37pm EDT
I’m 5’11 and down to the mid 160s pounds. That sounds like a healthy weight but I lost 35 pounds since last October when I got too sick to exercise. I feel most of my lost weight is muscle. I continue to lose weight.
Tuesday, August 6, 2013 at 9:38pm EDT
I didn’t look over weight at 200 pounds because I was solid muscle from exercising everyday.
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