← Return to Living with Syringomyelia

Discussion

Living with Syringomyelia

Spine Health | Last Active: Sep 19 10:18am | Replies (71)
Comment receiving replies
@woundedbear64

I've been living with syringomyelia since being diagnosed and having my first shunt placed in 1992 in Chicago.
I moved to International Falls, MN. In 2003 and had weight loss surgery, I had lost almost 200 pound in under a year, in doing so my spine sprung like a spring and caused another syrinx to start growing in my thoracic area. I had the Mayo clinic in Rochester, MN. Put a shunt in that area of my spine. Within a short amount of time, that shunt started to clog off and on, but I dealt with it until very recently.
I noticed changes taking place, so I probably need that clogged shunt replaced, and I'm concerned I may need another shunt placed in my lumbar area.
I'm fighting to stay on my feet, I had a person I met online with syringomyelia, she became very special to me, she ended up in a wheel chair, and then passed do to complications of syringomyelia.
Does anyone else have syringomyelia and how are you dealing with it?

Jump to this post

Replies to "I've been living with syringomyelia since being diagnosed and having my first shunt placed in 1992..."
John, Volunteer Mentor | @johnbishop | Jun 16, 2023

Hello @woundedbear64, There is another discussion that you might find helpful here:

--- Living with Syringomyelia: https://connect.mayoclinic.org/discussion/living-with-syringomyelia/

Have you discussed your concerns your doctor to see if they might have some suggestions for you?

VIEW AND REPLY
woundedbear64 | @woundedbear64 | Jun 24, 2023

That's wonderful, I have been living with syringomyelia since 1992, I had my first shunt put in my cervical spine in Chicago.
In 2005 I started going to the Mayo clinic, I had another shunt put in that same year, in my thoracic spine, unfortunately that shunt started clogging right away. That surgery was done by Dr Duddly Davis. I now have Dr Marsh, so if I need another shunt, or need the clogged one replaced, he'll be doing the surgery.
I'm a big guy, 6'5" 260lbs syringomyelia humbled me quite effectively. I lost a friend do to complications of syringomyelia, so I know it effects people differently.
Syringomyelia caused a Charcot joint in my right elbow, and it's twisting my left leg around, among other things, but I refuse to give into this disorder.
But I'm glad that you're doing well.

VIEW AND REPLY