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Old 06-06-2008, 10:06 AM
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Diagnosed with Chiari Malformation

So I just got back from the center and I have Chiari Type I.
He said the average Chiari patient has a growth of about 4mm, and mine is 14mm, which he had never seen before?!
So they are sending me to a professor at Harvard Medical School for experiments because apparently it is very rare for one that large?
The surgery to fix it has only been done about 400 times worldwide so I'm kind of nervous.
Does anyone know of anybody that has had this? Or anything?
I was not expecting this news today, I can tell you that!

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Old 06-06-2008, 10:52 AM
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oh wow.

i had never heard of that before, so i just looked it up - sounds weird, like you have a bad case of the least-bad type, which is... confusing. so were you having symptoms?

good luck, and tell more when you know more.
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Old 06-06-2008, 11:13 AM
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Yeah I know, its weird how its only Type I, but it is considered "extremely severe" because of the depth and length and I don't have the compression under my skull. My fluids are still flowing somehow.

They told me I was born with it, but they think my car accident in January stirred it up and made it begin 'functioning'.
I was struck in the head in the accident, so all of my problems are linking to this. They said theyre not 100% POSITIVE that those symptoms are because of the accident, but thats their only logical explanation.

Apparently they don't know much about the one I have. Thats why theyre sending me to Harvard for testing and study.

I'll know more Sunday, because I have to have an MRI on my neck to see if anything's seeped lower than they thought. Thanks a bunch though, really.
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Old 06-06-2008, 11:24 AM
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"This treatment is well recognized and accepted with many studies published (involving a total of hundreds of patients) in well-respected peer-reviewed medical journals showing that about 80% of patients obtain improvement." -Wiki

Good thing! And since it's a class I the chances are better? Crossed fingers.
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Old 06-06-2008, 01:17 PM
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Yikes! I really hope it works for you. It sounds like they know what they're on about. It'd be nice if your post-crash symptoms could be surgically removed!
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