Chiari I Malformation

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My Experience With Chiari Malformation

My name is Sheila Reilly. I am married to a wonderful man, and have two amazing children, and two beautiful granddaughters. This is my personal story of a very long, frustrating journey. A journey plagued by physical illness, many years of misdiagnosis, and many doctors not believing me, which caused me to repeatedly question myself. Finally in December of 1998, I discovered the name of the monster that was robbing me of my health. Please click on the "My Chiari Story" link above to read more.

My hopes are to help other people who are touched by Chiari in some way. Whether you have Chiari, or someone you love does, I know by my own experience that this is a confusing, frightening, uncertain time in your life. But, if you or someone you love has already been diagnosed, you have already hurdled one of the biggest obstacles standing in your way. Chiari is a rare condition, only 1 in 6,000 people have it. It is often misdiagnosed as another illness, or if a doctor can find nothing wrong, sadly enough he or she will possibly misdiagnose you with depression. Some doctors are so misinformed about Chiari, they think that it is a benign birth defect that does not cause symptoms. This generally leads to a delay in treatment until you seek advice elsewhere. Please do not give up, there is help out there.

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~Special Thanks To My Imzadi~

Don,

From the first day that I felt the first twinge of symptoms, you loyally stood by my side. Your faith in me never faltered, even when the doctors suggested that there was nothing physically wrong with me, and that depression was causing my symptoms. There were many days when my legs just would not move me, when I was exhausted, when I couldn't think straight, when all I wanted to do was sleep. I called in sick from work, exceeding my sick days and not getting paid. You never complained. You went with me to every doctor's appointment, you listened to me cry, you supported me through every new idea I had. After my surgery, you took such good care of me. You made sure I rested, but made me get up and move around so I wouldn't get too stiff. You helped me bathe, combed my hair, helped me try to get comfortable at night when it was hard to sleep. You have been there for me through all of this, yet I can't imagine how frightening it was for you to see me suffer. I want you to know that you are a rare find, and I will forever remember your love and dedication to me. I would not have been able to do this without you. I'm always strong when you're beside me.

Sheila

Please see the links above for more information about Chiari.