AVM Survivors Network

Help with spasms!

I have an AVM inside my spinal cord (level c6/cv7). When it bled in November of last year, it left me paralyzed from the chest down. I am now having SEVERE spasms which cause my legs to stiffen and stick straight out. It also happens in my abdomen and back, often pushing me backwards in my chair or bed. It makes it very hard for me to move. My doctor has given me a very high dose of baclofen, but the spasms continue to worsen. He wants to implant a baclofen pump in my side but i am not up for that-especially since it would inject the baclofen into my spinal cord, which could disturb the AVM. Has anyone experienced these spasms and/or baclofen and could weigh in on this (cause, possible solutions)???

Hello, Elizabeth, there was an earlier dicussion about this:

Here are some other spinal AVMers from other sites who have reported muscle spasms:

If your AVM is still active and untreated, and this is a new symptom, there is the possibility that the AVM is progressing. A couple of months ago, I recommended that you seek other opinions about its operability. If you can get a consult with Spetzler, that would be best. Wishing you some relief soon!

1 Like

Hi Elizabeth,
I too am on Baclofen, though on a very sm (tolerable) dosage per my neurologist. While I'm uncertain how much relief it actually offers my symptoms, yesterday I'd lapsed in taking it and my left side felt extra tight and was in more pain.
Are you in the care of a physiatrist? (a dr. who specializes in neuro rehab)
I echo dancermom's suggestion of a 2nd opinion w/leading AVM experts.
Best wishes to you.

Hi every one
My bro has severe spasms bc of his sugery. I wonder if you found any new treatment for spasm?