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Conquer Chiari: A Patient's Guide To The Chiari Malformation
Facing Chiari can be an overwhelming experience. Most people have never heard of Chiari, so when they or a loved one are diagnosed, they are thrown into a confusing world of tests and medical jargon without knowing what to do or expect. In the midst of this whirlwind, patients are faced with having to make important decisions with profound consequences. Based on hundreds of published medical studies combined with the author's personal experience, A Patient's Guide takes readers through the different stages of dealing with Chiari, and provides the information and tools necessary for people to take charge of their health care and make informed, intelligent decisions.
- GenresHealthNonfiction
320 pages, Paperback
First published March 7, 2008
24 people are currently reading
116 people want to read
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Displaying 1 - 13 of 13 reviews
March 26, 2012
My husband was recently diagnosed and this has been a helpful resource as we prepare for the unknown.
January 9, 2013
This was the first book I purchased after I was diagnosed with Chiari Malformation in January 2009. It was beyond helpful as I first began my journey down this path of illness and continues to be a reference for me throughout the years. The book's author, Rick Labuda is a leader in the Chiari community and has dedicated his life to educating patients, physicians, and the general public, and raising funds for research through his nonprofit organization, Conquer Chiari. More information about the author and his organization can be found at www.conquerchiari.org.
January 11, 2010
This is an ongoing reference book for me, as I was just recently diagnosed with this brain disorder. So far it has been soooo informative and pretty easy to read. The author shares little snippets of practical tips, their own experience and 2 cents, and more.
I plan to share it with my family, so that they better understand the disorder, and also my primary care dr.
I also highly recommend The Chiari Book by Dr. John Oro...a very informative, quick, easy read about the disorder.
I plan to share it with my family, so that they better understand the disorder, and also my primary care dr.
I also highly recommend The Chiari Book by Dr. John Oro...a very informative, quick, easy read about the disorder.
February 6, 2012
As a Chiarian,this book has been a crucial part of my life.The author doesn't intend to walk in the patient's shoes,but rather takes it upon himself to show every aspect of Chiari & how it effects everyone differently ,in easy wording for the patient & his family to understand with clear explanations of any medical jargon.Greatly recomemnded for patients & thier families...And as is written on the first page We Will Win !
Want to read
November 3, 2008I don't know that Chiari can be conquered! But, hoping that this book holds more promise
October 29, 2020
I have read a few books on Chiari malformation, and a huge amount online. This book is easily the most informative of the books, and - unlike most knowledgeable writing on the condition and its complications - is actually readable by someone other than a neurosurgeon.
When I was first diagnosed with this congenital condition, along with kyphoscoliosis, syringomyelia and several related conditions and complications at the age of 52years old, none of the various hospital consultants would tell me anything worth knowing about any of them. I tried researching online, but found myself wading sluggishly through ever more complex medical jargon, and looking it up just led me to more of the same. So I was totally lost, and it is something GPs rarely know anything about. Thank goodness I bought this book, when I finally had an account lucid enough for my health to begin making sense to me - and it gave me my life and equilibrium back.
'Conquer Chiari' will answer all your questions about the condition and its complications - along with a lot more that you don't think of until you begin to have the beginnings of a base knowledge to work from. The book explains the condition and potential prognoses, along with a lot of useful advice. But I must warn you: if you are someone who doesn't really want to know the full truth about your, including treatment options, then you may want to skip vital parts of most chapters, because it really does give you the nitty gritty, including if surgery is advised.
If you have been diagnosed with Chiari malformation, it would help your regular doctor to help you if they also read this book, especially as some symptoms may either make no sense or be wrongly dismissed. So I would very much recommend 'Conquer Chiari' and its accompanying web site, but be prepared for a blunt read in places. That said, even if you find the condition and everything you need to learn about it overwhelming, it will greatly help you cope with living with Chiari malformation and its less than desirable entourage of complications and companion conditions.
When I was first diagnosed with this congenital condition, along with kyphoscoliosis, syringomyelia and several related conditions and complications at the age of 52years old, none of the various hospital consultants would tell me anything worth knowing about any of them. I tried researching online, but found myself wading sluggishly through ever more complex medical jargon, and looking it up just led me to more of the same. So I was totally lost, and it is something GPs rarely know anything about. Thank goodness I bought this book, when I finally had an account lucid enough for my health to begin making sense to me - and it gave me my life and equilibrium back.
'Conquer Chiari' will answer all your questions about the condition and its complications - along with a lot more that you don't think of until you begin to have the beginnings of a base knowledge to work from. The book explains the condition and potential prognoses, along with a lot of useful advice. But I must warn you: if you are someone who doesn't really want to know the full truth about your, including treatment options, then you may want to skip vital parts of most chapters, because it really does give you the nitty gritty, including if surgery is advised.
If you have been diagnosed with Chiari malformation, it would help your regular doctor to help you if they also read this book, especially as some symptoms may either make no sense or be wrongly dismissed. So I would very much recommend 'Conquer Chiari' and its accompanying web site, but be prepared for a blunt read in places. That said, even if you find the condition and everything you need to learn about it overwhelming, it will greatly help you cope with living with Chiari malformation and its less than desirable entourage of complications and companion conditions.
December 18, 2017
I have Chiari, and this book was a tremendous help as I was deciding whether to have the posterior fossa decompression surgery. It's easy to read, and has just enough information without being overwhelming. Okay, I did have to put it down after my first read of the section about the surgery. But when I picked it up again, it was a great help.
January 4, 2015
I think this book is great, especially for anyone just diagnosed and needing/wanting to learn more about having Chiari and what it can entail. There is a lot of information out there and a lot of anecdotal evidence and Labuda seems to try to summarize and synthesize a lot of it. That said, there's not a great deal of scientific research and Labuda recognizes that as well.
The book is easy to read and understand, though sometimes I felt like it was a little too deferential to the physician. Most people I know with Chiari have spent months and often years working with doctors to get a diagnosis. Labuda suggests playing to your doctor's personality, but I don't think that's appropriate. The patient has an emotional and physical stake in this. For the doctor, it's a job. I think that you should ask every question you want regardless of whether the doctor is getting antsy. I think that if knowing some of the statistics will make you feel better or make a better decision, then you have every right to ask the doctor for those statistics.
The book tends to be about $17 on amazon, which, I believe, is the only place to buy it. My library network didn't have it; however, I was able to borrow for free from the Christopher and Dana Reeve Foundation. Shipping included.
The book is easy to read and understand, though sometimes I felt like it was a little too deferential to the physician. Most people I know with Chiari have spent months and often years working with doctors to get a diagnosis. Labuda suggests playing to your doctor's personality, but I don't think that's appropriate. The patient has an emotional and physical stake in this. For the doctor, it's a job. I think that you should ask every question you want regardless of whether the doctor is getting antsy. I think that if knowing some of the statistics will make you feel better or make a better decision, then you have every right to ask the doctor for those statistics.
The book tends to be about $17 on amazon, which, I believe, is the only place to buy it. My library network didn't have it; however, I was able to borrow for free from the Christopher and Dana Reeve Foundation. Shipping included.
March 7, 2019
Good Information
I would recommend this book to anyone who has Chiari Malformation or a loved one with it. The book covers some good information that everyone involved should know and his personal experience helps to demonstrate how each case is unique.
I would recommend this book to anyone who has Chiari Malformation or a loved one with it. The book covers some good information that everyone involved should know and his personal experience helps to demonstrate how each case is unique.
December 31, 2017
A little outdated since research in this field is continually expanding our understanding of it, but for the most part a very good starting point for someone trying to figure out what this diagnosis actually means and how to approach it. A warning to fellow Chiari warriors: There are so few true Chiari experts out there. Join FB groups, watch YouTube videos, and research, research, research. Don't trust any NS's opinion and always get checked for EDS, tethered cord, POTS, and mast cell problems before decompression surgery. Most doctors (neurosurgeons and neurologists included) are dangerously under-educated about Chiari and unfortunately, this is a diagnosis where the patient REALLY needs to advocate for themselves. This book is a great starting place, but definitely continue your research beyond this resource.
February 19, 2014
This book was a life-saver after I was diagnosed. Even looking around online, the information available was so jumbled. This book laid out the causes, symptoms, and possible management in a way that was easy to understand. Even my father read a little bit of it. I would definitely recommend this book to anyone affected by Chiari - no matter if that person is a patient or a family member.
April 30, 2014
Very informative book. Very thorough.
January 28, 2016
It is often difficult for me to explain what having Chiari means for me. This book was a great resource for my husband.
Displaying 1 - 13 of 13 reviews