Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
Hi all. I'm a 44 yo with a syrinx from my T2-T-10 which is gradually growing. I had difficulties getting diagnosed and still haven't been properly treated. Ive been dealing with it for over twenty years. I find myself having to explain to doctors what I have. I have a Chiari malformation and Tarlov Cysts too. I just wanted to say hi. Maybe to know someone out there too is struggling but getting by. I find many stories of other people being dismissed and ignored like I've been. I understand what it's like to have your symptoms and pain be trivialized by doctors and specialists, some who have no idea what it is to begin with. If anyone needs some encouragement or reminder that what you're experiencing is real and it'll be okay please let me know.
It is so nice to read about people making it work. I am so sorry to hear that yours is growing, that must be tough. I hope you have a routine to maintain strength and keep the pain at bay.