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Title: Hydrocephalus: A Guide for Patients, Families and Friends by Chuck Toporek, Kellie Robinson ISBN: 1-56592-410-X Publisher: Patient-Centered Guides Pub. Date: 15 February, 1999 Format: Paperback Volumes: 1 List Price(USD): $19.95 |
Average Customer Rating: 5 (9 reviews)
Rating: 5
Summary: After Fifty Years I Have Some Answers!
Comment: 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.
Rating: 5
Summary: Truthful, concise, informative- a "Must-Have" resource
Comment: 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
Rating: 5
Summary: Great Book
Comment: 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.
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