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

http://www.designer-iii.com

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)

Table of Contents

Cover

Copyright Page

Spinal CSF Leak Foundation Logo

Contents

Medical Disclaimer

World Health Organization on Chronic Pain

About This Book

Foreword

Karen not knowing she was writting this book

Karen’s Posthumous Introduction

Introduction to

Karen’s Journal ~ 1969-2010

Random Chronic Pain Thoughts

Karen’s Journal ~ 2012

Karen’s Journal ~ 2013

12 Tips for 12 Years Sick

Leaking at My Incision Site

Back Home Again

My Last Day

Life After Karen

By Darla L. Dodds, Licensed Professional Counselor of Hand in Hand Christian Counseling, LLC, Franklin, PA.

Karen’s Father Has a Heart Attack

Leaker Hotel Rates

Meeting Duke Dean Andrews

Called to Suffer book cover

“...And the Silence of the Dead...”

The Death of Opossum

Is There a Genetic Connection?

Karen Is Front Page News!

Garth Crosses Over the Rainbow Bridge

Karen Changes the CSF World

More on the Genetic Connection

Safety Announcement

Meeting Maegan and Dawn

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?

Mayh Runs for Karen 2017

Intracranial Hypotension Symposium 2017

Pain Warriors

Appendices

FDA’s MedWatch Adverse Event Reporting Program

Overview of Spinal CSF Leaks

I Loved a Leaker Merchandise

Amy’s Kitchen

Medicare ICD-10 Billing Codes

Interactive Global Map of CSF Leaks10

Biography of Robert “Hubby” Paddock



http://SpinalCSFLeak.org

spinal leak logo


Contents

  1. Medical Disclaimer

  2. About This Book

  3. Foreword

  4. Karen’s Posthumous Introduction

    1. The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?

    2. Running for Karen

  5. Introduction to the Medical History of the Late Karen Shettler Paddock

    1. Glossary of Terms in Karen’s Writing

  6. Karen’s Journal ~ 1969-2010

    1. Systemic Tendinitis Starts

  7. Karen’s Journal ~ 2011

    1. Random Chronic Pain Thoughts

    2. Lung Issues Start

    3. Nick Goes to Rainbow Bridge

    4. Can’t Walk Due to Tendinitis

  8. Karen’s Journal ~ 2012

    1. I Found Dr. Gray

      1. First Meeting with Dr. Gray

      2. Second Trip to See Dr. Gray

    2. Rebound Intracranial Hypertension Starts

    3. Struggling with Depression

    4. Living with an Epidural-like Headache for 23 Years No Opportunity to Make Deep Friendships

    5. Duke ER

      1. Benadryl

      2. I’m Blind

      3. Back in North Carolina

  9. Karen’s Journal ~ 2013

    1. What Is Wrong with My Hip

    2. 12 Tips for 12 Years Sick

    3. Arrive in L. A.

      1. LAX TSA

      2. Back Home

      3. Leaking at My Incision Site

      4. Emergency Return Trip to L.A.

      5. Cedar Sinai ER

    4. My Last Picture

    5. Back Home Again

    6. My Last Day

  10. Life After Karen

    1. How My Death Unfolded for Hubby

      1. Goodbye

      2. All of Karen’s ‘Stuff’

    2. I Want a “Do Over”

    3. Mental Health First Aid

    4. A Little Bit More

    5. Karen’s Mother Dies

    6. Karen’s Father Has a Heart Attack

  11. Leaker Hotel Rates

  12. Meeting Duke Dean Andrews

    1. “...And the Silence of the Dead...”

    2. Is There a Genetic Connection?

    3. Karen Is Front Page News!

    4. Donating Karen’s Body to Be Studied

    5. KDKA-TV Interview

      1. The Death of Opossum

    6. Garth Crosses Over the Rainbow Bridge

  13. Karen Changes the CSF World

    1. Suicidal Behavior and Ideation and Antiepileptic Drugs7

    2. More on the Genetic Connection

    3. The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?

    4. FDA Announces Safety Labeling Changes for Fluoroquinolones

      1. Safety Announcement23

    5. FDA Labeling Changes for Fluoroquinolne Antibiotics29

    6. Bayer, Maker of Cipro and Avalox Is Warning Doctors Not to Use Them!

    7. Meeting Award Wining Movie Producer Tina Petrova to Film Karen’s Story35

    8. Myah Hibiske Runs for Karen

    9. Medical Electronics Imaging to Aid Sufferers of Cerebral Spinal Fluid Leaks38

    10. Blake Resolution Designates “Spinal CSF Leak Awareness Week” 41

    11. Pain Nation with Ken McKim - S2E2: Karen Paddock’s Story

    12. Do Fluoroquinolones Cause Cerbrospinal Fluid Leaks?

    13. Intracranial Hypotension Symposium 201748

  14. Appendices

    1. FDA’s MedWatch Adverse Event Reporting Program

    2. Overview of Spinal CSF Leaks

      1. Symptoms

    3. I Loved a Leaker Merchandise

    4. Amy’s Kitchen

    5. Medicare ICD-10 Billing Codes

    6. Interactive Global Map of CSF Leaks10

    7. Memorial Fund

    8. Biography of Robert “Hubby” Paddock

  15. End Notes

     




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


Karen Blue Wolf


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


“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


Janelle Hermes Hibiske


“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.”