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@tbaxter33

Posts: 22
Joined: Aug 02, 2017

Syringomyelia

Posted by @tbaxter33, Fri, Mar 2 10:38am

Anyone familiar with Syringomyelia ?

REPLY

Hello @tbaxter33, I did my own research and am I understanding correctly that syringomyelia is the development of fluid-filled sacs within the spinal cord? https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771. If you don't mind and are comfortable sharing, is this something you have been diagnosed with?

I'd like to invite @fitchizumi, @sallymagint, @jujubbb, @luckygirl, who have recently discussed having syringomyelia on Connect and may be able to share their experiences with you. I would also live to invite back some members who have not be active in awhile in hopes they will return to Connect to share their experiences: @obrien, @christinemullen, @diane63, @deemath.

Hi Justin. Yes, that is the diagnosis. I am just looking to learn if others are symptomatic and what the symptoms are. I have lots of chronic back pain as well as shoulders, arms, neck, etc. In my case, there are two different "syrinx" noted — one in the cervical area and one in the thorasic area.

Hi Justin, I understand that people are born with these in their system. Mine is in my cervical spine C2 to 7, I Belong to an organization in Texas you can read the newsletter ASAP.org Been a member since 1992. My pain started after a Trauma when I was 24. 1964 .I found out the problem in 1992. And MRI showed what I had. I have been on Neurontin since then. I Live with nerve pain my right trunk And extremity. The Neurontin help somewhat but, I can’t take too much of it ,makes me very tired and dizzy. There are groups around the countryhaving meetings. I am never without nerve pain . As I tell my doctor it runs from “stem to sternum.” Get yourself a very good neurologist who has knowledge of Syringomyelia. Years ago before 92 I was told it was in my head! Some neurologist have limited knowledge of Syringomyelia you don’t want them. Do you have Chiari malformation also? Syringomyelia & Chiari Project po box1586. Longview TX 75606-1586 Phone 903-236-7079 Get in touch with these folks also they can be a great help.

As for me, no Chari. Yes, I can relate to the pain. The belief is that mine started with a trauma about 10 years ago after being thrown from a horse. I am finding that most providers don't really know what to do with the condition, and really do not know how to deal with the pain. I have been seen by a very knowledgable physician on the condition in another city. I plan to follow the progression of the growths with regular visits to see him (probably semi-annually). I don't think most understand the intensity of the pain. I am unable to take NSAID medicines (which previously helped a lot) due to kidney issues, so Tylenol is about all that is left and really does nothing for me. I am involved in some trial procedures to help relieve lower back pain and will address the cervical and trunk area next. Maybe it will help, though it provides only relatively short-term relief involving some localized injections. I have had 4 MRI studies in the past 6 months dealing with it. Thank you "fitchizumi" for the informatoin on the project in your area as well as the contact information. Perhaps they have some information on options in my area. Again, thank you.

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