Multiple sclerosis and scoliosis

[slipsliding]

Hi,
I'm new but I've received so much help and information from MS forums, it just seemed wise to search out a scoliosis forum.

I've had MS for 20 years. I'm still mobile thanks to an implanted intrathecal baclofen pump. That helps with spasticity and has allowed me to walk ( not far, and I don't act like the woman in the MS drug commercial.). I've known about pain caused by spasticity, contractures, neuralgia, etc. But about 6 month ago, I started to experience a cramp like pain that would grab me on one side in my ribs and hip...it would stop me in my tracks. the only way it eased was to sit or lay down and put heat on the area. but the pain was consistent in that it would hit when I started to do any activity like cooking, washing clothes, loading the dishwasher.

Well when you have MS and complain of a cramp, the docs look at you as if to say, "Remember, you have MS.". so I tried PT, turning my baclofen pump up, turning my baclofen pump down, ad nauseum. Nothing eased the debilitating cramping.

Long story short, last month my Physiatrist (not psychiatrist although I may need one of those soon) decided to run X-ray scoliosis series. the results is a 40 degree curve starting at T10 and ending at L3. I don't know scoliosis language yet so I'm not sure what kind of curve, etc.

Theories of why scoliosis now range from muscle weakness on one side of my body caused by MS (lots of atrophy in muscles on that side from tongue, face to calf and ankle, and the other theory is I've leaned so much to one side for balance...which is true...the spine has curved that way.

Surgery is out due to the hardware and catheter for the pump which is inserted at T9, and the fact that there is so much other MS issues going on, It just wouldn't be prudent. I'm also getting up there age wise, I'm 63. .

so here's the question I'd like to put to the forum, the Physiatrist and the PT staff think a brace might help alleviate some of the pain. From what I can gather the brace is made by Aspen and is specifically for scoliosis. they've put a call into the Rep. Have any of you used an Aspen scoliosis brace?

Sorry for writing a "novel"... I'll try to keep my posts shorter in the future.

[titaniumed]

Welcome to the forum!

I have not worn an Aspen scoliosis brace, but it looks pretty good. For pain, its worth a try.

I have not seen any posters here with baclofen pumps......How long has it been in, and how do you like it? Just wondering?

Hang in there

Ed

[slipsliding]

Welcome to the forum!



I have not seen any posters here with baclofen pumps......How long has it been in, and how do you like it? Just wondering?



Ed

Hi Ed,

I've had the pump since February 2011. Having it implanted was the best decision I've ever made in my MS journey.

The spasticity in my legs was so bad, I was hardly able to walk and I had maxed out the oral dosage of bacloen. I couldn't lift my feet
off the ground more than an inch, and I shuffled more than walked. I had a contracture in my ankle, and had no range of motion in that ankle,
nor in my hips. Because of the hip spasticity, I could not put one foot in front of the other, my steps were very small. Once the pump was in,
the foot still angled, but I had ROM in that ankle, and in my hips. I went from shuffling to a full, normal gait.

Baclofen itself is very sedating when taken orally. But with a pump, the delivery system delivers the med straight to my spine
so I didn't experience the drowsiness that the oral baclofen caused. I went from taking 80 milograms (80,000 micrograms) of
baclofen orally, and now I use 250 micrograms (.25 milograms) per day via the pump. And as my spasticity worsens, it's just a matter of going into
the Physiatrist's office and having them "bump the pump", i.e. adjust the dosage upward...done remotely using a device held over the
location of the pump.

Not to be taken lightly though, and I'm sure those on this forum know any surgery dealing with your spine carries risks.
I've had two revisions, one because the catheter moved out of the thecal sac and the other because
the pump itself moved out of place. So in the time I've had it, my neurosurgeon has had to do three surgeries, and I'm facing
a fourth when the pump gets replaced in another year (their battery life is 6-7 years.) However, if I had to have a surgery a
year just to experience the relief that the pump gives, it would be worth it. Everybody's different, but for me the pump was
my "miracle" device.

[jackieg412]

I am sorry to hear of your problem with MS. I haven't worn the brace but it may be worth a try. It may help with pain.