Rating: 
Summary: A guide for families to learn more about hydrocephalus.
Review: "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.
Rating: 
Summary: A great resource!
Review: 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.
Rating:
Summary: Truthful, concise, informative- a "Must-Have" resource
Review: 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:
Summary: This book is Gold, a real Treasure
Review: 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.
Rating:
Summary: This book is Gold, a real Treasure
Review: 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.
Rating:
Summary: After Fifty Years I Have Some Answers!
Review: 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:
Summary: After Fifty Years I Have Some Answers!
Review: 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:
Summary: Truthful, concise, informative- a "Must-Have" resource
Review: 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.
Rating:
Summary: Great Book
Review: 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.
Rating:
Summary: I can begin to understand this condition.
Review: 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.
|
