Wednesday, May 15, 2013

PWS Awareness Day #15: Scoliosis

Scoliosis, or a curvature of the spine, occurs in about 46% of the PWS population. Some curves begin even before the age of 1. Scoliosis is thought to occur in the PWS population because of low muscle tone (there it is again), but there might be other reasons as well. Depending on the severity of the curve and age of the child, options for treatment are bracing, casting (a series of casts applied under general anesthesia), and as a very last resort (because of the high incidence of complications in the PWS population), spinal surgery. General strengthening in physical therapy and also hippotherapy (horseback riding) can help to keep a spine strong and some have reported a halt in curve progression or even improvement with these therapies. Severe scoliosis can have a variety of consequences, including putting pressure on the heart and lungs, and obviously restriction of movement and discomfort.

Yearly x-rays are recommended for people with PWS to assess a baseline and progression of scoliosis. This can begin when the child can sit upright.

We have not yet had this with Dean, but it could pop up at any time. Interestingly, Dean has something called spondylolisthesis, which is a vertebra that gets bumped out of place. And it has nothing to do with PWS (to which I replied, "really? Could we not have bonus issues?").

Here is a picture of J wearing her brace for scoliosis.


James Reynolds said...

Thanks for the information; I've been researching adult scoliosis treatments online for my friend who has a mild case of this disorder that causes him a little bit of discomfort. Do you know of any physical therapy to help alleviate this, or would surgery be the only option?

Ali Foley Shenk said...

Hi James!
My understanding regarding surgery is that it's a last resort. I have scoliosis myself and I have heard various things from orthopedists, chiropractors, and physical therapists about what does and doesn't help - and the recommendations seem to contradict each other. I don't think anyone would recommend surgery for mild scoliosis, though. I see a chiropractor on a regular basis and that basically eliminates the discomfort that I have from it. I also do some stretches to help the muscles on one side (that are tight from my spine being curved in that direction) not get so tight. I'm not a doctor, but that's my advice!
Ali :)