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Syringomyelia and Chiari

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I am still waiting for the Chiari Institute to call me. It's only been two weeks

since they recieved all of my information. I have noticed that there are a lot

of comments about Chiari and Tethered Cord Syndrome. I don't however, read a lot

about people with significant Syringomyelia. I now know some terms that I didn't

know before. I know that I have severe bouts of Myoclonus. I get them

everywhere, for seemingly no reason. I do get them at night as I'm going to bed,

as others have mentioned. I also get them during the day, particularly when I

take pain meds. I also have the burning in my back...it's like wearing one of

the blankets they put on you when you get an exray....only there is a burning

underneath it. I learned that this is called Dysesthetic pain. I like finding

out that what I feel has a name...many names in fact. Now if I could find

someone who also experiences creaking or grinding noises inside of their head

and tell me what that's called, I won't feel crazy and I will have a name for a

sympotom that I have had since I was a young child of 5 or 6.

Waiting patiently...

Sonya

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