Neuromuscular Scoliosis

[rdmc]

Just thought I'd pass on this information as it might help someone who is having pain of unknown origin. I started having pain and severe spasm one one side, from my ribs to my hip months ago. At first it was just a hassle, and would resolve quickly if I changed my posture or just took a break by sitting or lying down. Standing for more than 10 or 15 minutes seemed to bring on the pain and spasm. Over time, the pain continued to come on with less physical activity, and it was more severe.

We tried adjusting the pump, even though I was pretty sure it wasn't spasticity. We adjusted it up, we adjusted it down, no relief. I've adapted my lifestyle to deal with the pain, and when it wasn't possible to "get off my feet" I'd have to take some pain med.

So my physiatrist and GP recommended PT but it just wasn't much help. My physiatrist then ordered some x-rays and it seems I have scoliosis in my spine, and it's rather severe, affecting portions of my thoracic and lumbar spine. Normally she said they'd send a someone with this severe a curve to a surgeon, but due to my age, and other considerations (the pump) I'm not a candidate for surgery.

So we're going to try to design some PT stretches that we hope will help keep it in check and try to lessen the progression. All this to say don't just chalk up pain to being MS. Although neuromuscular scoliosis is caused by the MS, it is not specifically the MS that's causing the pain, and you may be a candidate for therapies or even surgery that would give you relief.

What I learned...signs of scoliosis: pain, especially when standing; leaning to one side; one shoulder appearing higher than the other shoulder, and/or one hip being higher than the other.

It took about 6 months of me mentioning this spasm, and specific symptoms, until a doctor decided to get to the cause of the pain. Why? Because when you tell a doctor you're having a painful spasm, they remind you that you have MS Yes I do, but it is not what causes all our symptoms and pain. In the end, even though I might not get relief from pain, at least I'll know what's causing it.

[Kimba22]

Hi rdmc,

Well, I'm glad the cause of your pain was finally figured out, but that stinks!!!

I'm sorry yours is already considered severe and there's nothing they can do about it. (Although the back surgery involved doesn't sound very appealing, either.) I hope PT stretches will lessen any progression of your curve (and also help with the pain).

This can also affect patients in wheelchairs. http://spinecenter.ucla.edu/body.cfm?id=161

Thanks for sharing and best of luck.

[Tia1]

I have scoliosis and this exact pain, Severe spasms under my rib cage and pain in my hip and back. It does suck! At the moment, I'm only taking anti-inflammatory medication with baclofen, and Keppra to help with this pain when it comes.

My doctor has given me a variety of reasons why I may be having this pain. It's amazing to me how much you can live with once you learn its not life threatening.

Oh well! It could be much worse. I will be praying for you.

[rdmc]

Hey Kimba...yep finally figured it out.

It was my pump doc that finally ordered the x-rays. I'm going to use their PT and I guess we're going to try to find some sort of stretch to alleviate the spasm. Before we were assuming it was spasticity and working on hip flexors, and thigh muscles which didn't help. I suspected it wasn't spasticity because I could pick my foot up off the ground, and raise my leg while lying...both of which I can't do when my spasticity is increased. The pain is intense, but it is escapable...it's just one more restriction from the stupid disease. But truth be told, I've done household chores in spurts for years. That was to compensate for fatigue, I now have a little less time on my feet before spasm onset, but still find that you can cook a meal or fold a basket of clothes, in 10 minute segments.

Tia,

Sorry to hear you have this.

We've (my physiatrist and I) tried to come up with a theory as to why it happened. Was it the leaning to my right side for years to maintain balance that caused the curvature in my spine? Or is it from muscle atrophy that I seem to have on one side of my body? The atrophied muscles tend to allow the strong muscles to pull my body toward the strong muscles direction, resulting in a curve. I know this happens in my neck...atrophied muscles (which are quite visible in my neck) allow my head to sort of flop to the right. I can consciously keep it up, but if I lapse into a relaxation mode, there goes my head, leaning on my right shoulder. Also have it in my tongue left side is atrophied and it tends to lay in my mouth on the right side.

Of course all the theorizing in the world doesn't get rid of it, so hopefully we'll be able to come up with some sort of PT that will stretch out the spasm when it hits. I'll let you know if we find something that works.

Thanks for the prayer, I appreciate that.

[Seasha]

rdmc - yes, it really stinks! I'm sorry this is affecting you so severely. I have scoliosis too, but was told is started happening in my childhood, so it's there is stay. I also have lordosis, a curvature in my lower back (called swayback) so yea, I understand about pain and spasms! And my gait has severely affected all this too.

What has helped my spasms is stretching, taking a gentle yoga class, doing it at home too and going to my chiropractic Doctor, who does gentle manipulations and well as massage from time to time.

I sometimes take a muscle relaxer (flexeril) when it the pain is above 10! Surgery has been recommended, but that is the last resort.

I hope your PT is able to lessen the progression! Maybe a gently yoga class would help you too? I'll be thinking of you

[rdmc]

Thanks Seasha,

I'm glad I'm going to my physiatrist's PT to start. I have a pump, and have had to have 2 revisions in the past few years because the pump (one time) and the cathether (a different time) moved out of place and I had to had a redo surgery to get everything back where it belonged.

There are certain restrictions I follow when it comes to exercising or stretching, but I sure check with my physiatrist about yoga.

In doing some quick reading about scoliosis I found that it starts most often in childhood. That must be a hard thing for the kids, in general, but especially those who need the braces (they looked extremely uncomfortable) and surgery.

[Fishytrout]

I urge ANYONE having pain to find a Pain Specialist. I was remiss in doing so and even though having horrific pain in my upper back I didn't go, because I was convinced they wouldn't BELIEVE my pain (like so many doctors did with my MS issues). Recently I had a "Nerve Block" of 3 separate thoracic nerves. OH MY GOSH!!! The relief is so mind blowing, that I want to shout it to EVERYONE to please PLEASE find a Pain Specialist!!

[mdok]

neuromuscular scoliosis

I was diagnosed with RRMS Feb. 2003. I started chiropractic treatment in 2011 or 2012, not due to MS. In early 2013, XRay showed I had developed a functional scoliosis. I had spasms in the right rib area in my thoracic spine. If I stood too much, the pain there increased dramatically. I started PT Oct. 2013, with core strengthening, balance and other exercises and stretches. I was on oral Baclofen and Tizanadine muscle relaxants. Jan. 2014, I had an intrathecal Baclofen pump installed,which helped the spasms in my back and my spasticity greatly. I continue PT to improve balance, core strength, and generally improve my walking etc. I am off the Tizanadine, and have decreased my oral Baclofen and Baclofen buy pump since 2014, My scoliosis is due to my MS. I have the side bending, rotation of vertebrae, hip and shoulder height differences and occasional leg length differences. I will continue PT to improve what we can, and to maintain the function I have now.

[rdmc]

I was diagnosed with RRMS Feb. 2003. I started chiropractic treatment in 2011 or 2012, not due to MS. In early 2013, XRay showed I had developed a functional scoliosis. I had spasms in the right rib area in my thoracic spine. If I stood too much, the pain there increased dramatically. I started PT Oct. 2013, with core strengthening, balance and other exercises and stretches. I was on oral Baclofen and Tizanadine muscle relaxants. Jan. 2014, I had an intrathecal Baclofen pump installed,which helped the spasms in my back and my spasticity greatly. I continue PT to improve balance, core strength, and generally improve my walking etc. I am off the Tizanadine, and have decreased my oral Baclofen and Baclofen buy pump since 2014, My scoliosis is due to my MS. I have the side bending, rotation of vertebrae, hip and shoulder height differences and occasional leg length differences. I will continue PT to improve what we can, and to maintain the function I have now.

Hi Mdok,

I missed your post when you made it back in February.

Sounds like you're in the same boat. They say my MS is what led to the scoliosis. My bending is to the right side, with my right shoulder forced down, and hip height is uneven.

I have a baclofen pump, and it has helped my spasticity immensely. I've had it for almost 6 years, that's 5 years before I started with the scoliosis problem. I couldn't get the baclofen pump to help with the scoliosis pain. We tried upping the dose and downing the dose, but it didn't help the pain from the curvature. For now I'm going to PT 2 x a week and that does seem to help keep the pain some.

I'm finally getting a brace in a couple weeks, or getting fitted for one, not sure how it works. This should help me stand up straighter, and help relieve some of the pain associated with the leaning.

The brace is called the Peak Scoliosis Brace...google it and you'll find videos explaining how it works. Pretty ingenious design, I'll let you know if it works.

Hang in there.

[Kimba22]

I'm finally getting a brace in a couple weeks, or getting fitted for one, not sure how it works. This should help me stand up straighter, and help relieve some of the pain associated with the leaning.

The brace is called the Peak Scoliosis Brace...google it and you'll find videos explaining how it works. Pretty ingenious design, I'll let you know if it works.

Hang in there.

Good luck with the brace! Hope it works for you.