Gambaro - The truth about carpal tunnel syndrome: finding answers, getting well

The Truth About
Carpal Tunnel Syndrome

Library of Congress Cataloging-in-Publication Data

Gambaro, Jill, 1959

The truth about carpal tunnel syndrome : finding answers, getting well / Jill Gambaro.

pages cm

Includes bibliographical references and index.

ISBN 978-1-4422-2579-4 (cloth : alk. paper) -- ISBN 978-1-4422-2580-0 (electronic)

1. Carpal tunnel syndrome. 2. Carpal tunnel syndrome--Treatment. 3. Overuse injuries--Miscellanea. I. Title.

RC422.C26G36 2014

616.85'6--dc23

2013051337

TM The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences Permanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

To anyone who has ever tried to express themselves with their hands.

This book was difficult to write, not least because of my disabilities. Many I interviewed were cautious about what they said and wanted to approve any quotes I attributed to them. Many disagreed with others comments. Some, including doctors, lawyers, risk managers, and insurance researchers, wouldnt even talk to me. Several people suggested that I coauthor the book with an MD, but I knew that wouldnt allow me to write the book I felt was needed. Not everyone will agree with what I say. At least Ive sparked a conversationlikely a very heated one.

Not everyone agreed with the need for a book from the patients perspective. Those of us who contract repetitive strain injuries (RSIs) must learn to live with them. We have to find a way to understand them that allows us to begin to undo the damage thats been done. Frankly, we care less about definitive science than about our quality of life. When you are a patient suffering with a medical mystery, you face not only the devastation of a catastrophic illness but also the tough road of fighting for a quality of care that does not exist, no matter what the professionals tell you. Those who treat RSIs either tell you with absolute confidence that they can fix the problem or say that theres no medical evidence to support your symptoms. Both stances are true as well as false.

It is very frustrating, when you are not a scientist and have not been trained in medicine, to be expected to make life-altering decisions. I couldnt find a doctor to advise me about whether or not to have back surgery. No one wanted to assume the liability.

I am not a doctor; Im a writer and filmmaker. I have no training in health care. There are others more qualified to write about the science of RSIs, but they risk their jobs by doing so. No one can fire me; Ive already lost my job. Nothing I say in this book should be taken as medical advice. Nothing I say in this book should be taken for the whole truth. No one knows the whole truth about RSIs right now, which is why so many still contract them.

Everything about RSIs is complex: their physiology, politics, and legal, economic, and sociological issues. The real stakeholderspatients, employers, and doctorsarent the ones in charge. Plenty claim to understand what causes them. Plenty show evidence backing up their point of view. Their certainty is necessary for them to proceed along their line of scientific inquiry, and we need their definitiveness, even if it isnt the whole truth. As I write this, Im sitting in a coffee shop across from a woman wearing a wrist brace. Last night I went to a dinner party and met an Olympic athlete who had unsuccessful carpal tunnel surgery. When I went to my local Social Security office to tell them I was writing the book, the stoic clerks allowed wry smiles to slip onto their faces. Every one of us is a stakeholder in RSIs.

I have written this book in an attempt to bridge the gap between patients and doctors, researchers and clinicians, workers and employers, politicians and policy makers, scientists and lawyers. Im striving to change average peoples understanding of RSIs so that they dont rely on the government, their doctors, or their employers. Theres a disconnect between what the medical establishment is willing to endorse and what a patient is willing to live with. This is the real crux of health-care reform.

I have not been cured of my RSIs; I have only learned to manage them. I have to remain vigilant about the types of tasks I do and how often, how much exercise I get, and how much sitting and standing and walking I do. Constantly. Im always looking for ways to be able to do more. If I stop exercising or sit too long or type too much, I get a flare-up. Pain comes crashing down on me again, along with fear and anxiety.

We may not all be world-renowned concert pianists or surgeons, but we all rely heavily on the use of our hands. You can work without your legs or your sight but not without your hands. They are a very intimate part of us, and to lose use of them affects our ability to express ourselves and to care for our loved ones and ourselves.

Many thanks to all the brave people who did agree to be quoted in these pagesspecifically, to Dr. George Piligian, Dr. James D. Collins, Dr. Marian Garfinkel, Greg Dempster, Bonnie Prestridge, and Jonathan Bailin, who helped shape the book and reviewed much of the material. Also, thanks to the Los Angeles Repetitive Strain Injury Support Group and to all the RSI sufferers Ive met over the years. Your stories helped me go on. Finally, thank you to my personal team, all of whom acted as my sounding board and support system: my publisher, Suzanne Staszak-Silva; my agent, Rich Henshaw; and Susanna Bond, Elaine Dodd, Carver Irish, Nancy Bliven, Taniya Hossain, Joe Goshert, Alex Goshert-Hossain, and Jennifer Martin. Lastly, thanks to Fidel, who curled up beside me during much of the writing.

I used Dragon voice-recognition software for Mac to write the book. Its less accurate than Dragon for PC that I used successfully for years. I still had to edit by hand with the Mac version. I would have been able to do a good deal of the editing using voice recognition with Dragon for PC.

It all started with a strange sensation in my left palmnot what I would call pain, just a tingling. It was as if I had slept on my hand or a bee had somehow became trapped inside, its venom pulling my thumb and pinky together. But when I looked at my hand, it looked perfectly normal. I kept stretching it open and rubbing my palm, trying to figure out what was causing the strange sensation. Had I somehow compressed my hand under the pillow during the night? Unlike when a limb has fallen asleep, this didnt go away. After a few days, I mentioned it to a friend who is a medical illustrator. She said, Thats not your hand. Thats your neck.

I grew up in an Italian neighborhood on the east side of Detroit. Three generations of Gambaros lived there, not to mention countless aunts, uncles, and cousins. Everyone knew me before I knew them: the old man in the dime store whod let me slide if I was a few pennies short, the burly butcher who always gave me a few slices of salami to nibble on while I waited, the nice ladies at the bakery who slipped me a few powdered-sugar puffs called angel wings whenever my mom sent me in for bread. Youre Marios granddaughter, arent you?