anyone here have syringomyelia only? In Ontario

[hismuffin]

looking for others with Syringomyelia only (NO chiari) in Ontario.

[Skydie]

It is now 2017 and not sure if you have had any luck but I have a syrinx in my spine and one in my neck. No malformation on the brain as well. I am about an hour drive just outside of Toronto. My syringomyelia is getting so bad. I am now on disability and want my life back. But the pain by the end of the day, sometimes all day every day. It's making me crazy. My family doctor was completely puzzled and didn't know what it was and put me on a fentenyal patch, which I am now off of after 3 years thank god! Just take muscle relaxers but it's getting out of control. I have a new doc that's a little better trying to get me referrals but it's taking him so long to find anyone or get answers. I am terrified! I have had back problems since I was a kid so I know how to deal with pain. So I know it's getting bad because I want to scream every night! Did you find any help? Need some guidance!Thanks Heidi

[selmaS]

Hi and welcome to the Chiari forum Heidi......this member may no longer be active, to get their attention send them a PM (private message) this should trigger an e-mail to be sent.....

[Jo2215]

Hi,
I was just diagnosed with a syrinx, no Chiari, in August.  I'm presently just trying to find a doctor who can address this finding and counsel me on where to go from here.  It's not easy to find doctors who are knowledgeable on the subject. Sorry I can't be of more help.