Tuesday, June 18, 2013

Yearly Ortho Visit

Dean had his yearly orthopedist visit today to take x-rays for scoliosis and to monitor his spondylolisthesis (for a refresher on the role of scoliosis in PWS, here's the post from awareness month).

Good news: Dean's clavicle isn't broken (threw you for a curve [pun intended] on that one, huh?) Last night, Bob felt a bump on Dean's collarbone and when we thought about a few events where Dean fell and his almost-disturbingly high pain tolerance, we figured it was possible he fractured it. Fortunately, today's appointment was in the books already, so we had them take an extra x-ray. As the doc said to Dean, "

More good news: Dean's spondylolisthesis (which has nothing to do with PWS - awesome, right? It's when a vertebra, looking at the spine from a side view, is bumped out of alignment) has not progressed. Phew. There's not much that can be done for it short of a spinal fusion if it gets bad, so we'd like to avoid that for as long as possible forever.

Would have been a little better if I hadn't scanned it so it was crooked... doesn't help out in the determining-how-straight-it-is process...

Eh news: Dean still doesn't technically have scoliosis, but his "straight as an arrow" spine is now a spine with a little wave in it. Apparently, to be considered officially scoliosis, a curve must measure 10 degrees or more. This one can't even be measured, and so the orthopedist (Dr. Chester Sharps here in RVA) recommended that we come back *maybe* in a year to re-check. Mmmm, that would be reassuring except that we've been to more than a few FPWR conferences where orthopedic doc and PWS expert Dr. Harold van Bosse made recommendations otherwise. Scoliosis *can* (not always) progress very quickly in PWS, and so we were eager to hear his take. I emailed him a scanned pic of the x-ray and seriously, within 15 minutes he wrote back. Wowsers. He confirmed what Bob and I were thinking, which was that although the curve as it currently stands (pun intended) is not noteworthy, its *onset* is. So he recommended getting re-checked by x-ray in 6 months, and then we'll go from there. I'm sure Dr. Sharps will think we're nuts, but I'm here for my son, not for him. :)

So, it doesn't *mean* anything per se right now, because there's not much we can do except that we are definitely starting back up with hippotherapy for Deano. I had a feeling that once we stopped, we were going to see some changes in his spine. Of note, Dean's posture has also worsened since stopping.

So really, it's a more of a sigh, here's the next frontier of PWS sort-of thing. Scoliosis has been one area in which we've been able to say, 'nope, Dean doesn't have that,' and there's not much left anymore. As another PWS mom posted today for yet another mom who needed encouragement, "this is probably harder on us than it is on them most times." And it's so true. I always just hope that Dean would know in his heart that we love him enough to do whatever it takes, and I *do* still pray that scoliosis does not become a major issue. Or really, that it stays a non-issue. We'll check back in 6 months.


Kevin said...

Did you know that the character Amy on the Big Bang Theory (Mayim Hoya Bialik) did her dissertation with an investigation of hypothalamic activity in patients with Prader-Willi syndrome?

Ali Foley Shenk said...

I did!! I don't remember how I first heard about it, but I think she is also involved with FPWR, the organization that does research for PWS. So cool! :)