Syringomyelia

Until you pointed this section out to me DJ I had never heard that what I have going on is a former of this. I have since learned so much more by use of the Internet. My own doctor had to look it up also. In just a few short weeks I will be going up the spinal clinic in Rochester MN. Getting a bit apprehensive about it now. Ha lf of my days are spent in a daze now , with all of the nerves drugs they have me on. If I do too much , such as even take the garbage can to the end of the driveway, I spend 3 days with cramps and pain in my legs along with no sleep.

I hope the clinic that I am going to next month is up on all of this. We don't know how long that I have had this, so we really don't know how much damage has already been done. I'm hoping for the best.

Thanks Annev308, and all others . I'm just not sure if having the cyst removed will do any good. What help it would be, will it help the adhesive arachnoiditis? I guess it will be questions that I need to get answers for before any surgeries.

TJ, they don't remove the cyst. Instead, they remove the adhesions and then the CSF flow normalizes and the cyst collapses. Syrinxes are not cysts in the way I think of a cyst, which is a fibrous capsule filled with fluid or maybe fat, but basically it's encapsulated so you can just pop it out of there. Syrinxes are kind of cavities that form in the center of the cord and fill with CSF. For some of us (or at least me) they formed because the flow of CSF in my dura was wrecked by scar tissue and adhesive arachnoiditis. Oncs that was all cleared out and the CSF was able to get around the cysts collapsed and swoop! I had lots of good return.

Well, Mayo is good. FWIW, I think it's a wonderful resource and you're fortunate to be close enough to have access. I was going to go to Mayo, because all the fancy physiatrists and neurologists I saw were baffled and kind of useless and super enthusiastic about pain meds and lyrica/neurontin, and then my PT said that what was going on for me (sensation changes and function loss) matched something she had done a report on in grad school and suggested googling it and sending my imaging to the three authors with the publications that made the most sense to me. Which I did, and two of the three referred me to the third, with whom I have had great outcomes.

I hope so much that this is rapidly and successfully resolved for you - and that laminectomy may turn out to be handy if you have to have surgery - getting into the dura often requires laminectomies and/or laminectomies, which ouch, so maybe you'll get to skip that part.

I'm excited too. Thank you all for your encouragement and support. It really helps to have you all in my corner. Tim