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Posted by Carol on May 12, 2000 at 11:10:38:

In Reply to: Re: TO CEE posted by CEE on May 09, 2000 at 14:50:45:

: : Hi I have been reading thru here and noticed you have a syrinx,if you haven't already please visit the site and also Springs/Chalet/2135/ there you will find stories from many of us with SM or ACM and believe me we know the pain even the smallest syrinx can cause,maybe we could give you some support there,we have a disscussion board and also we visit a chatroom at MGH if you'd like to join us please visit the last site an we'll guide you there,The listserv at the wedsite is very good to if you haven't already found it,Just thought I;d let you know in case.

: Thanks Carol,I certainly will check out those sites. Do you or someon you know have a syrinx. Have a good day. Cee
Hi Cee Yes I have syrinx at C4-7,considered small but after 4 neruos I finally found one that knew something about this an he said that yes all my problems are coming from the syrinx an it was diffucult intractable pain,hard to treat,I'm seeing a pain doctor,taking 8 Norco a day an low dosage of nerurontin an trying to work up on it,I tried it before an couldn't handle it but the doc had put me on 900mg a day an the pain doc said that was too high to start out on so will see,anyway I have suffered so bad last 2 years,really since 95 but last 2 years unbearable,I had to finally give up work an trying to get SSD now,have a hearing next week,my pain is left sided from my ear to foot,bad in neck,shoulder an leg,every doc I seen before this one said it was too small to be causeing so much pain,but the last one said anything inside your spinal cord no matter how big or small isn't suppose to be there an messes up the spinal fliud flow an can cause all this,I have numbness in arm an leg on left side too,he said the cyst fills with fluid an presses on the differant nerves that cause the pain an numbness,In my case I'm not candidant for surgery because the cyst is small an he said it may cause me more trouble than I have already,if thats possible,I guess it is since he said it could even leave me paralized,I'm having yearly MRI's to watch it an ensure theres not a tumor there,maybe hiding out behind the cyst because we don't know how I got my syrinx,Hope you found the site ok an read the stories from us,Carol

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