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    Chiari Malformation Patient's Sourcebook
    Chiari Malformation Patient's Sourcebook
    Chiari Malformation Patient's Sourcebook
    Ebook109 pages57 minutes

    Chiari Malformation Patient's Sourcebook

    By Jennifer Wetzel

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    About this ebook

    Your definitive guide to Chiari malformation! In this groundbreaking book, the authors cut the medical jargon and present a comprehensive guide to what you can expect as a Chiari patient. From acupuncture to surgery, MRIs to vestibular testing, this book contains everything you need to know from diagnosis to treatment. How to find a neurosurgeon, what you can expect from surgery and recovery, what the different diagnostic tests are like and how YOU can take control and live a full life after diagnosis.

    LanguageEnglish
    PublisherAndale LLC
    Release dateApr 8, 2014
    ISBN9781311093332
    Chiari Malformation Patient's Sourcebook

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      Book preview

      Chiari Malformation Patient's Sourcebook - Jennifer Wetzel

      Chiari Malformation Patient’s Sourcebook

      Jennifer Wetzel, MA, May Chodron RN (Ed.), Brian Hawking, MD (Ed.)

      Smashwords Edition

      ****

      Copyright 2014 Jennifer Wetzel, MA, May Chodron RN (Ed.), Brian Hawking, MD (Ed.)

      Cover photo: Valua Vitaly | Fotolia.com

      Smashwords Edition, License Notes

      This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

      Contents

      Introduction

      Causes

      Anatomy of the Brain

      Classification

      Symptoms

      Diagnostic tests

      Treatment Options

      How to find a Chiari surgeon

      Prognosis

      Related Disorders

      Glossary

      Chiari Malformation Organizations

      Internet Resources

      Introduction

      "I had a ridiculous, around-the clock migraine. I spent my days dizzy, in and out of blurriness and confused with a constant pressure in my head & neck. For years I took migraine pills, convinced I had the world’s worst migraines. If only I had heard of Chiari malformation sooner, all those years of pain could have gone away…" Anne, Loveland CO.

      Chiari malformation (CM), also called Arnold-Chiari, ACM I & II, hindbrain herniation or tonsillar ectopia, is a serious, structural condition that affects the base of the brain and skull. The area involved is where the spine joins the skull -- an area called the cranio-vertebral junction. The condition is named after Hans Chiari, an Austrian pathologist who reported the first incidence of Chiari malformation in 1891.

      When the bottom part of the cerebellum -- the region of the brain that plays an important role in motor control -- expands out of the skull through the opening between the skull and the spine (the opening is technically called the foramen magnum), it forms what is called a hernia. A hernia is where an organ bulges out of the area it is supposed to be contained in. A hernia can happen to any organ, but when it affects the cerebellum it is called a Chiari malformation.

      This bulge can cause serious issues, including many distressing symptoms such as severe headaches, balance problems, sleep disruptions, depression and incontinence. In addition, it can also cause a disruption in the flow of cerebrospinal fluid. This fluid normally acts as a cushion, protecting the brain and spine. Chiari malformation can also cause a compression in parts of the spinal cord.

      The condition was once estimated to occur in one in a thousand births, although most of the cases are asymptomatic-- which means you technically have a CM but you don’t have any symptoms like a headache or balance problems. However, due to the evolution of diagnostic imaging it is now thought to be a more common than originally thought. CMs are often detected by chance when a patient undergoes an MRI for an unrelated condition, such as head trauma after an accident. CMs are more common in women than in men, but it isn’t understood why.

      Exact figures of how many people are actually affected by this disorder are unknown. Complicating the estimation is the fact that many children who are born with CM will not show symptoms until their teenage years or early adulthood and many will never show symptoms at all. In other words, there could be many, many thousands of people with Chiari malformations who are blissfully unaware of their condition. This isn’t necessarily a bad thing; even if you’ve been diagnosed with CM it doesn’t necessarily mean you need treatment for it. In fact, for many people it never causes any problems, other than the psychological distress of knowing that there’s something wrong with your brain.

      "I was diagnosed with Chiari in 2001, after I was in a minor car accident and got whiplash. After I got the all-clear from an MRI (the whiplash just caused some muscle problems), I was horrified when my physician told me I had Chiari malformation. The thought that part of my brain was bulging out of my skull was so distressing at first that I felt I was in a constant state of panic – despite my doctor’s reassurances that it might never cause any problems. Here I am more than a decade later, and I’ve never had a single symptom. The stress from the diagnosis went away after a few months, mostly after I did some research and found out it’s a pretty common finding. I’ve almost forgotten about the diagnosis now!" – Julie, Miami FL.

      If you have been diagnosed with Chiari malformation, or you have a relative who has been diagnosed, it’s sometimes a very distressing diagnosis. There’s something about having a problem with your brain that can make the bravest person quiver in their shoes. Add that to the fact that surgery is the only treatment for a symptomatic Chiari malformation (in other words, one that’s causing symptoms), and you have what can seem like a daunting diagnosis. The thought of brain surgery is enough to induce stress in the calmest of people. There is good news; your CM may not need surgery if your symptoms are manageable. And if you do need surgery, you may not need actual surgery on your brain – you may be a candidate for surgery on just the skull itself (this procedure leaves the brain completely intact).

      Why is surgery the only option for treatment?

      You can think of

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