Neuromuscular Scoliosis and progression

Hi,

I found this forum back when I was trying to find out what my options might be.  After seeing 2 neurosurgeons and a pain

management doctor, I just wanted to  come back and say I

have found temporary relief from pain, and although that's

like a bandaid on a wound, it has helped me "mentally"

to realize I don't have to constantly live with the excruciating pain.

I have MS for 20 years.  It was discovered that in the last few years I have developed neuromuscular scoliosis.  I had had

a previous x-ray for another reason a few years ago and everything in my back was "perfect."  So this came on quickly,

both in development and progression.

I progressed from 40 degree  to 55 degree curve in a year.

I have an implanted Baclofen pump which means I have a

catheter which is considered intrathecal...it drips Baclofen

onto my spine 24/7 and has been wonderful in easy my 

spasticity in my legs.  When the curve was discovered because

of my "lean" to one side, the pain was pretty significant and

it just went from bad to worse.  I was good for about 5-10 minutes on my feet, then the pain was too much.

My pump neurosurgeon and a deformity neurosurgeon both

explained the surgery and discouraged it, but would leave it up

to me.  I'm 65, and from the MS, I have significant weakness

in my legs and core.  When I saw the movements required

for recovery (like the log roll) I knew I could not recovery from

the surgery because I couldn't so the movements necessary

to recovery.  Log roll instructions say "swing your legs" onto

of other recovery exercises that I could not do so we all decided

against the surgery, so the pain management doctor was

the next step.

The deformity neurosurgeon thought that ablation of the nerves

in the area might be the right treatment once they did facet joint infections to locate the nerves, but the pain doc wanted to do epidural steroid/lidocaine.  I went with her suggestion and after one shot the results were very significant.  The pain was lessened by about 70 percent.  Curvature was still there, of course, but it seemed a little better also.

the doctor's I've seen to answer.  Since this is neuromuscular

and the MS will continue to cause atrophy in the muscles which will lead to more curvature, what's the end game?  Will I just

curve more and more, and end up in a chair or in bed?

Anybody have an answer to the question about neuro diseases

that keep on progressing and consequently the scoliosis would

keep on progressing?   

0 likes, 0 replies