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Re:I'm new a this

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Hi Sonya,

Don't worry about whether you are using terms or numbers to describe your

condition. One thing I always like to tell new people is that the length of the

herniation of the cerebellar tonsils isn't as important as the extent to which

CSF (cerebral spinal fluid) is being blocked. Since you were diagnosed with a

significant syrinx, that suggests that your flow is blocked, but more studies or

a flow study MRI might be ordered.

I like to refer new people to some of my favorite websites for reliable

information about Chiari and related conditions. If the moderators don't want

to include the links, send me an email and I'll send them to you privately. Of

course, there is CCI http://www.chiariconnectioninternational.com/ and I like

ASAP http://www.asap.org/ That site is especially good for referring to

physicians who want to learn more because it has a link to professional

information. The Conquer Chiari website has lots of information about research

http://www.conquerchiari.org/index.htm and WACMA has links to doctors lists and

other helpful information http://www.pressenter.com/~wacma/

I think most of us hadn't heard of Chiari before we were diagnosed with it!

Kim in Columbia MO

CM/SM; PFD 2004 & 2008, both by Dr. Oró

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