Hydrocephalus: A Guide for Patients, Families & Fr: A Guide for Patients, Families and Friends (Patient-Centered Guides) [Paperback]

"Hydrocephalus: A Guide for Patients, Families, and Friends," is the culmination of years of our own research to learn more about this condition. According to the latest statistics from the U.S. Centers for Disease Control and Prevention, hydrocephalus affects approximately 1 in 1000 newborns in the United States each year. Additionally, hydrocephalus can be acquired later in life (either childhood or adulthood) for a variety of reasons, including meningitis, cysts or tumors of the brain, or head trauma. Considering its high incidence rate, there are very few resources in print for families to find out more about hydrocephalus.

One of our goals when writing "Hydrocephalus: A Guide for Patients, Families, and Friends," was to present the material in laymen's terms so it could be easily understood. We have combined useful information for patients and parents with real-life stories from people who live with hydrocephalus. Their experiences, when combined with the information we've provided, helps to shed some light on how to deal with certain situations. Most importantly, the stories are a means of support for the many people who feel they are alone with this condition.

We include information on how hydrocephalus is diagnosed and treated, and covers topics on hospitalization, types of shunts, shunt revisions, and the various side effects of hydro. Also included is information on how and where to find support, dealing with insurance companies, and things you can do to be more informed about the condition. Since the majority of people who are affected by hydrocephalus are children, we have included a chapter on schooling, which also covers individualized education programs (IEPs). The book also includes a glossary and resource listings in the appendices.

"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.