Hydrocephalus: A Guide for Patients, Families & Friends By Chuck Toporek & Kellie Robinson 1st Edition February 1999 1-56592-410-X, Order Number: 410X 379 pages, $19.95

Preface

hydrocephalus is a complex and unforgiving condition. The more you know about hydrocephalus, its side effects, and how to live with the condition, the more you will be able to prepare yourself for the road ahead.

"Knowledge is power." These words--spoken by the English philosopher Francis Bacon--hold great meaning when it comes to any medical condition, and in particular, hydrocephalus. There is much to know, and very few places for parents to turn when their child is first diagnosed with hydrocephalus. We hope this book fills that much-needed space to provide you with information, resources, and most importantly, support.

Why we wrote this book

It wasn't until Kellie's second shunt revision in 1991, when she was 24 and just after we were married, that we started to learn more about hydrocephalus. Kellie's neurosurgeon told us what a shunt was and how it worked. Remarkably, he explained it all to us in terms that we could both understand and without talking down to us. This was the first time we actually knew what a shunt looked like because he pulled a sample out of his desk drawer and showed it to us.

This began our quest for knowledge about hydrocephalus. We knew that in order for our relationship to survive, we had to know more about the condition, which in a moment's notice turned our world upside down. However, we were quite amazed at how little information there was out there for non-medical laypersons about hydrocephalus. Everything we encountered was highly technical, written by and for neurosurgeons.

It wasn't until 1995 when The Shunt Book, by James Drake and Christian Sainte-Rose, was released that more information about hydrocephalus came into the mainstream. Although The Shunt Book was useful for finding out more information about the mechanical devices people with hydrocephalus rely on, it lacked the kind of information we craved. We wanted to know what was happening in Kellie's body. We wanted to know what symptoms to be aware of. We wanted to know how to deal with the uncertainty of not knowing when and if her shunt would fail again, where to get support, and how to live with hydrocephalus as normally as possible without being in constant fear. We had a lot of questions and nowhere to turn, except to each other.

Around the same time that The Shunt Book was published, we stumbled across a mailing list on the Internet called HYCEPH-L. Compared to the popularity of the Web, mailing lists are kind of the underworld of the Internet, yet most teem with energy. We subscribed to HYCEPH-L and were amazed by some of the email messages people were sending out to the list. People from around the globe shared their feelings and frustrations of living with hydrocephalus and watching their children or loved ones going through shunt revision after shunt revision. People offered caring messages of support, understanding, and love.

But the most common questions to the list were about how to find more information about hydrocephalus. Some people recommended mainstream medical journals like the New England Journal of Medicine or the journal Neurosurgery. Although these journals offer great insight on the latest treatments and studies about hydrocephalus, they are written for neurosurgeons--using their vocabulary and addressing their concerns.

HYCEPH-L not only brought us closer to others who have hydrocephalus, it was also our first introduction to the Hydrocephalus Association in San Francisco. The fact that there was an organization out there for the condition renewed our hopes of learning more about hydrocephalus.

This book started with our own search for answers, but it could not have come about without the similar search by many others impacted by hydrocephalus. Some of the answers have come from medical doctors and medical texts, some from patient organizations dedicated to finding and sharing information, and much from the shared wisdom of patients and parents living and coping with hydrocephalus.

What this book offers

Our goal was to create a book that contained all the information you need to know about hydrocephalus.

• Medical information. We have included medical background so that you will be informed, able to ask your doctor questions, and participate in care decisions. Where medical terms are used--and they are--we explain to you what they mean; there is also a glossary of terms at the back of the book.
• Practical matters. As every patient and family knows, the medical facts are just one facet of hydrocephalus. We go into some detail on practical matters that can make life less stressful--for example, how to prepare for emergencies or write appeal letters for claims denied under insurance.
• Emotional support and stories. We have tried to let you know that you are not alone. We include many resources for emotional support and patient organizations. Throughout the book you will find stories and suggestions from parents and patients who wanted to share what they learned and what they have been through. The words are their own; some names have been changed to protect the person's privacy.

While researching the material for this book, we were constantly asked to write about the things that doctors don't tell patients. Some doctors feel they are best serving their patients by only giving them information on a need-to-know basis. What some doctors don't understand, however, is that after patients are discharged from the hospital, they may have many questions that still need to be answered.

The audience for this book encompasses a wide range of ages and experience: parents of newborns, parents of children, teens curious about what lies ahead and lifestyle decisions, and adults in charge of their own health and treatment. Other family members, such as spouses of those with hydrocephalus, will also be involved in watching for symptoms (especially neurological side effects such as confusion, mood changes, or lethargy) and seeking treatment. The "you" that this book is for is all of you who need to learn about the condition and make decisions, whether on behalf of your child, your spouse, or yourself.

How this book is organized

We have organized the book in the order that most people need the information.

The first two chapters are about finding out about the condition. Chapter 1, What Is Hydrocephalus? describes hydrocephalus, the areas and structures of the brain, and the flow of cerebrospinal fluid through the brain. Chapter 2, Getting the Diagnosis, discusses the different types of hydrocephalus, causes of the condition, and how hydrocephalus is diagnosed. You also hear firsthand stories from patients and parents about how they reacted to learning about the diagnosis.

The next four chapters are about treating the condition. Chapter 3, Selecting a Neurosurgeon, teaches how to find out more about your neurosurgeon and to choose the best doctor for your situation. Chapter 4, Treating Hydrocephalus, explains shunt systems, where they are placed, differences among shunts, sample shunt surgeries, and nonsurgical treatments. Chapter 5, Hospitalization and Recovery, describes what to expect during a neurosurgery stay, preparing your family, admissions process, common hospital rules, and the recovery process. Chapter 6, Shunt Revisions, looks at some of the reasons why a shunt can fail, what to look for as signs of a possible shunt malfunction, how your neurosurgeon determines the extent of the problem, and what will happen if the shunt needs to be replaced or revised.

The last five chapters talk about living with the condition. Chapter 7, Side Effects, describes potential side effects that may follow shunt surgeries and how they are treated. Chapter 8, Finding Support, talks about the wide range of support available to families dealing with hydrocephalus, and how to start a local support group if none is available. Chapter 9, School, examines issues for school-age children, including absences for hospitalization or recovery, the potential for learning disabilities, and individualized education plans. Chapter 10, Insurance, looks at insurance issues of importance to those with hydrocephalus, such as preexisting conditions, lifetime caps, provider networks, billing problems, and appealing denied claims or services. Chapter 11, The Well-Informed Patient, describes managing hydrocephalus for the long term. It includes knowing your medical history, planning for emergencies, researching new treatments and findings, and being aware of medical legislation that affects you.

Appendixes A-E include a list of pediatric neurosurgeons, contact information for organizations and associations, medical libraries and medical journals, suggested reading, and additional Internet resources. A glossary of medical terms can also be found at the back of the book, along with a bibliography listing the reference sources used for this book.

How to use this book

Consider this book a personal resource guide. This book does not need to be read from cover to cover. Read only the sections that apply to your present situation and needs. Then, when you get a chance or have some time to spare, go back and check out the rest of the book to answer other questions that may not be as critical. If you still crave more information, there are substantial resources at the end of the book.

The personal stories shared throughout this book are written into each chapter to give you more insight as to what others have been through with hydrocephalus and how they have coped. The stories may or may not reflect your present situation. Every person's situation and experience will be different, although many issues are held in common.

Acknowledgments

We have many people to acknowledge for their efforts in helping this book come together.

First and foremost, we would like to acknowledge Emily Fudge, executive director and founder of the Hydrocephalus Association in San Francisco. Emily, you have been behind us all the way since we first knocked on your door a year ago with a draft of the outline for this book. Your unflagging dedication to the treatment and care of people with hydrocephalus truly inspired us. By giving us complete access to your wealth of knowledge, as well as your medical advisory board, you helped mold this book into its present form. You were our guiding light, and we are forever in your debt.

To our technical reviewers, we also owe you many thanks. Knowing that we are not medical professionals, you gave valuable input that not only made the book technically correct, but also helped set the benchmark for future editions and other books on hydrocephalus. Our reviewers included: Dr. Peter Black, Dr. Alexa Canady, Dr. Samuel Ciricillo, Dr. Michael Edwards, Dr. Roger Hudgins, Dr. Sue Lehr, Dr. J. Gordon McComb, Dr. Marijean Miller, Dr. Marion "Jack" Walker, Dr. Rochelle Wolk, Siobhan Geary, R.N., M.S., Emily S. Fudge, Marcy Sheiner, Cynthia Solomon, Greg Tocco, Debbi Fields, Nancy Bradley, Lynn Power, Kathie Kelley, Chris Riccio, and Jeff Browndyke.

Additional thanks to Nancy Keene, author of Childhood Leukemia, Your Child in the Hospital, and Working with Your Doctor, for her part in the review of our book and for her editing suggestions. Sections in this book on sources of support, support groups, taking a tour of the hospital, absences from school, who' s who in the hospital, and befriending the staff are excerpted or adapted from sections in her book, Childhood Leukemia.

We would like to express our appreciation to the members of the hydrocephalus listserv, HYCEPH-L, for opening your lives for all of us, and for bearing with our questions and requests for input for the book. We strongly believe that the stories you've shared with the readers of this book will help countless others to cope with this very unforgiving condition. HYCEPH-L subscribers who contributed their experiences include: Nancy Bradley, Shirley Bricker, Cynthia Burkhead, Ruth Butler, Gina Coats, Don Cook, Geraldine Diehl, Jason M. Dunn, Lynda, Chuck, and Dakoda Eads, Donna M. Ellis, Debbi Fields, Stacy Gaches, Denise Group, Jo Ann Haglund, Mike and Lisa Healy, Joan R. Hendricks, Dara Herman, Paula Jongenburger, Heidi Kanitz, Kathie and Mike Kelley, Gretchen M. Kohl, Karen Langston, Christy R. Little, Chuck Liu, Judy McGhee, Sandra Mallon, Randy Markey, Linda Meehan, Janet Price-Ferrell, Chris Riccio, Carl and Adina Sherer, Brenda Standefer, Christian Stuhr, Greg Tocco, Deanna H. Traxler, Jeannie Washburn, Jim Weaver, Yasushi Yamashita and Shibata Yasuko, Mike and Lisa Zeman, and those who wish to remain anonymous. Also thanks to Kellie's sister Sheri and our good friend Katie Johnson for their support and for contributing stories to our book as well.

Another group of people we would like to thank are the shunt manufacturers who supplied us with photos of their shunts, technical information, instructional videos of surgical procedures, and anything we needed or asked for. The folks who helped us out include Tom Tokos from Codman/Johnson & Johnson, Marie Hatheway from Medtronic PS Medical, Judy Roth and Terry Layton from NeuroCare Group, Courtney Smith from Phoenix Biomedical Corporation, and Katrina Halbig, Stephen Farris, and Jim Bazzinotti, from Elekta/NMT Neurosciences (U.S.).

Next, we would like to extend our gratitude to the people at O'Reilly who helped make this book possible. We cannot say enough about the encouragement and support we received from our editor, Linda Lamb. This book started out with a simple one-paragraph email to Linda, explaining, in a nutshell, what hydrocephalus was and why a book about it was so desperately needed. That simple email lead to numerous conversations and meetings to develop an outline for the book. When we first embarked on this project, Linda asked if we thought we could do this together without killing one another. We're happy to report that we've not only survived writing it, but can gladly say we haven't had a single skirmish.

We would also like to thank Carol Wenmoth, editorial assistant, for readying our book for production and her careful attention to detail, from illustrations to permissions to resource listings.

Thank you to both Linda and Carol for believing in us, mentoring us, and for giving us the support (and schedule deviations) we needed when Kellie's health threw us a curve while writing the book. All that positive energy really paid off.

Also thanks to the many people at O'Reilly whom we haven't met who've played a part in the production, copy editing, and design of our book.

Our deepest appreciation to our parents: Greg and Carol Toporek, and Robert and Carole Robinson, for all their love, support, and encouragement over the years and while we wrote this book.

Thanks to our friends, who were there for us when Kellie had her revisions in 1991, and who've faithfully been there through the good and bad times since: Wes Bethel and Jane Lybecker, Shirley Brooks, Anne and Steve Cole, Cathy Goodman, Joe and Katie Johnson, Mary Kay Hasemann, Bob McNamee, Mike "Morty" Morton, Michelle van der Oord, Bob Schmitt, Max and Tonka (the fuzzy buddies), and Troy Colston (wherever you are).

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