Guest guest Posted August 30, 2010 Report Share Posted August 30, 2010 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 Quote Link to comment Share on other sites More sharing options...
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