Customer Reviews

Hydrocephalus: A Guide for Patients, Families and Friends

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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.

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!

I find this to be a valuable resource for those diagnosed with hydrocephalus. My (formerly healthy) son became hydrocephalic at age 16, following removal of a brain tumor two years before. A VP shunt was placed. It lasted 4 months before clogging. Then 8 revisions in the next 9 months. Two months later, he had an appendectomy that was unnecessary, because what he REALLY had was an abdominal irritation/infection of the distal shunt catheter- When the catheter was removed from the abdomen, so was ALL the pain he had fought for three weeks, taking Dilaudid IV, and fearing the worst. Antibiotics were given, and three days later, the shunt was reinserted in the abdomen with no more problems, and we came home the next day!
Local family practice doctors misdiagnosed- they were confident it was his appendix, and that the continued post-op pain was gastric-related.
Upon arriving at my son's neurosurgeon's hospital, correct diagnosis and treatment began within 24 hours. His roommate's mother showed me this book. I sent my daughter to the bookstore that day. EVERYTHING I needed to know is in there- plainly described, easily understood, written by someone who has been there- it is a great, easy to read, resource for all ages of patients and anyone who wants to understand this condition. If we had had the book sooner, we would have immediately gone to the neurosurgeon, and all would have been resolved before many painful and needless tests were performed by well-meaning professionals. Neuro hospital staff told me it is impossible for them to tell us everything that can possibly go wrong with a shunt- I knew about shunt infections that originated in the brain, but no one told us that severe right side pain, with a temperature could be shunt-related- especially when it was obvious the shunt was working properly.
I don't want to scare you with my story, but rather an example you can learn from. Learn all you can, because everyone who takes care of you doesn't know about shunts-
I have now purchased 5 more copies of this book- gave one to my son's school for the staff library- (They were very grateful, because they have worked with my son for almost 4 years, and want to help, which means understanding) Two will go to the doctors who misdiagnosed, so maybe someone else won't go through what we did- the others, I will share with family/friends- whoever- This book contains all aspects of care/concern- As an RN, whose speciality is NOT the brain, I applaud the couple for writing this book, and want to spread the word that this is the only book you will need. Written in everyday language, with a dictionary in the back, it tells the truth and gives guidance, information, and support.
Thank you, Chuck and Kellie, and my best wishes to you both. Thank you Amazon.com for offering reduced prices on this and other resources, making them accessible. For those of us with chronically ill children, money is very tight.
Just sign me, a grateful Mom in Michigan

In reading this book, I came to understand what a person with this condition must endure. Both the medical descriptions and the personal experiences of patients helped me to "visualize" what I had been hearing about for the past eleven years, but had not fully grasped. I do not have hydrocephalus, but in reading this book, I now know how I can or cannot help friends and family with the condition.

Most interesting to me were the concrete, straighforward scientific explanations. This book is a must for those of us who are not medically trained but still have a need to research how the brain works and how hydrocephalus affects patients.

Thank you to the authors of this book and to those who contributed to enlightening the puplic about this condition.

I've had Hydrocephalus for 27 years, all my life. Until recently I thought I completly understood my condation. When I picked up this book, I found there was a lot more to it. It helps me to know what is going on inside my brain and helps me to know that I am not the only one. If you don't have Hydrocephalus, or know someone with it, you can't understand what it'sd like and the sheer frustration one who has it goes through. I hope other people pick up this book to gain an understaning of what those who have it go through on a day by day basis.

Ms. Robinson's and Mr. Toporek's book is a tremendous resource for anyone affected by hydrocephalus. It allows a person to understand hydrocephalus and the issues that affect the entire family in layman's terms. While, at the same time, being very thorough and detailed.

It is a definate "how-to-guide" in dealing with hydrocephalus. As the Executive Director of the Hydrocephalus Foundation, as well as, a person with hydrocephalus, I highly recommend "Hydrocephalus : A Guide for Patients, Families, and Friends"

An important book not only for the person with hydrocephalus, but for family and close friends as well. If you're looking for a book that explains hydrocephalus, shunts, shunt complications, symptoms, and everything in between in layman's terms, you've found it. Here is reliable information which you can read and reread as often as you need. It provides you with the knowledge you need to ask neuros the right questions and to understand their answers. As a parent of a child who had a shunt placed in infancy, I can't recommend this book highly enough.

I was born with hydrocephalus which arrested itself without any shunts when I was a small child. However, I have been dealing with poor vision, misaligned eyes, poor coordination, and an unusual gait for my entire life. I thought I had a great deal of understanding about my condition but this book has been a godsend! Questions I have had all my life have been answered and just reading about my condition has given me a peace of mind I have not had up to this point. Chuck and Kellie are to be commended for the service they have given all of us in writing this book. Please read it even if you know of no one with the conditon. You will learn a great deal.

This book has become my new bible. It is loaded with information for hydrocephalus patients of all ages. It covers just about everything you need to know if you have hydrocephalus or have a loved one with this dreadful condition. My four year old son was shunted for hydrocephalus when he was five weeks old, and I have learned more about this condition browsing through this book over the weekend than I have learned from his doctors in the past four years. I strongly urge anyone who has hydrocepalus or knows someone who has it to get this book. It offers terrific medical inormation in layman terms, it offers information regarding insurance, choosing a doctor, education for children with hydro, and much, much more. I have ordered four more copies. One to share with my family, one for the parent lending library at my son's school, one for the NICU at the hospital where my son was diagnosed and one for the neurological floor at the hospital where my son has spent a great deal of time because of his condition. I want the hospital to share this book with all of their hydrocephalus parents and patients. I wish this book would have been available four years ago when my son was diagnosed. This book has definitely helped me understand hydrocepalus better.

As I poured through the book, I couldn't stop thinking "I wish I'd had this wonderful resource when my daughter was diagnosed with Hydrocephalus"! The book is easy to read, concise, full of information and well-organized. It not only answers questions but offers antedotes from patients and family members affected by this medical condition. I would say it is a "must read" for anyone interested in learning more about hydrocephalus. I will tell my daughter's neurosurgeon about the book so that it can be offered as a resource to newly diagnosed patients and families.