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

Chuck Toporek , Kellie Robinson
5.0 out of 5 stars  See all reviews (7 customer reviews)

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Book Description

19 Feb 1999 156592410X 978-1565924109 1

Hydrocephalus, often referred to as "water on the brain," is a potentially life-threatening condition that affects one in a thousand babies born in the U.S. Hydrocephalus is now generally treated with surgical placement of a shunt system that drains excess fluid around the brain to another part of the body where it can be absorbed.

As the child grows, shunt revision surgeries are often necessary. Adults with hydrocephalus can be prone to shunt failures or other changes that necessitate subsequent surgeries. Lifestyle choices or pregnancy can strongly impact fluid pressure and health.

Authors Chuck Toporek and Kellie Robinson have lived with hydrocephalus for years and have interviewed neurosurgeons, patient advocates, and families living with the condition.

Hydrocephalus: A Guide for Patients, Families & Friends informs patient and family so that you can:

  • Select a skilled neurosurgeon
  • Understand what treatments are being proposed
  • Participate more fully in your care
  • Know what you can expect during and after surgery
  • Know symptoms needing attention
  • Know where to turn for support
  • Keep records helpful for future diagnostic or surgical work

Families who read this book will encounter medical facts clearly explained, advice to ease their daily life, and tools for patient advocacy.


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Product details

  • Paperback: 379 pages
  • Publisher: Patient Centered Guides; 1 edition (19 Feb 1999)
  • Language: English
  • ISBN-10: 156592410X
  • ISBN-13: 978-1565924109
  • Product Dimensions: 15.2 x 2 x 22.9 cm
  • Average Customer Review: 5.0 out of 5 stars  See all reviews (7 customer reviews)
  • Amazon Bestsellers Rank: 992,722 in Books (See Top 100 in Books)
  • See Complete Table of Contents

More About the Author

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Product Description

From the Author

A guide for families to learn more about hydrocephalus.

"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.

About the Author

Chuck Toporek cut his teeth on a Mac II system when he got his first job in publishing in 1988, and has been using them ever since. Chuck is a senior editor in charge of the Mac OS X/Apple Developer Connection (ADC) series for O'Reilly & Associates, Inc. He is also the author/editor of the Mac OS X Panther Pocket Guide, co-author of Mac OS X in a Nutshell, and author of the upcoming title, Inside .Mac.

Kellie Robinson, who was diagnosed with hydrocephalus in 1971, is a freelance writer and has worked in broadcasting. Kellie also writes a column for adults with hydrocephalus for the Hydrocephalus Association's quarterly newsletter. Chuck Toporek has worked as an editor in medical and scientific publishing since 1988 and is currently the managing editor of Web Review magazine. Together, the authors combined their skills and personal experiences to research and write the first guide for patients with hydrocephalus.


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Customer Reviews

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Most Helpful Customer Reviews
2 of 2 people found the following review helpful
5.0 out of 5 stars A must have book 9 April 2008
By Zoe
Format:Paperback
This is a must have book for anyone dealing with hydrocephalus - whether you're a parent, patient, family or friend this book is just about the only book available that covers this medical condition in an easy to read & understand format.

I don't need to write a long review - suffice to say this book was invaluable to me after my son was born and subsequently diagnosed with hydrocephalus.

If you care for someone - or know someone - with this condition then you HAVE to have this book on your bookshelf.
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2 of 2 people found the following review helpful
By A Customer
Format:Paperback
Kellie and Chuck have pursued and completed a wonderful project for patients and families who deal with hydrocephalus. Written not by medical professionals (though editing and consulting have been appropriately included) but by common folks whose lives have been impacted by hydro. The sames questions, concerns, fears, and symptoms that occur to everyone impacted by hydrocephalus are addressed in easy to understand (and relate to) terms. Of particular interest are the personal accounts that pepper all sections of the book. You can almost see yourself in the various quotes and questions gathered from patients and family. You definitely will see there are others in your position. The important topic of support is also well addressed. In conclusion, this is a breakthrough writing for hydro patients and families. To my knowledge, this may be the first book on hydro written for patients and families, not medical practitioners. In libraries and bookstores there are dozens of books on cancer, heart disease, and other more common diseases. This is understandable, but I have found none on hydrocephalus and I needed a resource. Kellie and Chuck's book on hydro was the first I have found and it is available on Amazon. I highly recommend it to individuals, family, and friends who are impacted by hydrocephalus. Don't leave for the doctor's office without it!
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2 of 2 people found the following review helpful
5.0 out of 5 stars This book is Gold, a real Treasure 10 April 1999
By A Customer
Format:Paperback
I picked up this book one morning and did not stop reading until that evening when I was finished. It was so easy to read and so informative that I could not put it down. Since then it has helped me with many decisions in dealing with my daughters medical situation. This book explains hydrocephalus completely and clearly while giving suggestions about many aspects of receiving the best medical care possible including how to talk to your neurosurgeons, what symptoms to watch for and how your medical system affects the kind of care you can expect. The sections on hospitalizations, shunt revisions and side effects offered information that I had not received anywhere else. I also made many new connections with others dealing with this condition through the appendixes in this book. Buy this book and be informed! I am now passing it around to all my family members and friends so that they can finally understand what hydrocephalus is all about. I will continue to treasure this resource in the years to come as a reference and means of support when it is most needed.
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