It’s been a while since we’ve had any new concerns about Jon to worry about, but after our latest appointment with his orthopedic surgeon, now we do. The latest x-rays reveal that Jon has scoliosis, a lateral curvature of the spine.
Skeletal distortion is not uncommon in people with cerebral palsy: because of damage in the nervous system, their muscles are often “turned on” constantly. (As a mental exercise, tense some of your muscles, then imagine that it’s a permanent condition. But it needn’t be so complete: perhaps it is just a section of muscle, or a fraction of the fibres in one particular area.) This constant muscular pressure can be intense enough, over time, to gradually distort bones. Jon already shows some skeletal distortion, primarily in his feet and legs. But there is something slighly unnerving about seeing this distortion in the spinal column, in black and white on the x-ray.
How exactly is Jon’s CP affecting his spine? If we run our hands along Jon’s spine it’s easily felt that there’s a bulge of muscle running down the spine on the left, but not on the right. The bulge is a regularly-innervated lateral band of muscle; the other side’s muscles reflect where those particular neurons got damaged at birth, so can’t be used to articulate those back muscles. And so they can never develop.
Gradually over time, a small section of strong muscle has pulled and twisted the lower vertebrae. According to the doctor, the scoliosis has been developing longer than its sudden appearance suggests. Those muscles have been tugging subtly behind the scenes for a while, too subtly to be seen in the past by physical observation. No doubt its dramatic entrance to the big time is due to the sudden adolescent growth spurts and the increased weight of his torso that has to be supported (as you grow two-dimensionally, your proportion of weight grows three-dimensionally).
So what’s to be done? Exercise is always good, and Jon certainly needs more than he’s been getting. We and our school physiotherapist are trying to get a number of things happening when he’s at school. But it won’t undo the curvature already present, and won’t realistically stop any increasing distortion. Braces have little effect on kids with CP, since the huge pressure on the vertebral column is internally generated and won’t be stopped by a mere brace. Jon’s spine curvature isn’t severe enough for surgery. So basically there isn’t really anything we can do other than watch and wait until his teenage growth spurt finishes. Only then will we be able to determine whether his scoliosis has grown severe enough to necessitate an operation or any other kind of intervention.
Just one more worry in the all-you-can-eat buffet of concerns that is Jon’s life.
No comment yet
Elizabeth says:
October 19, 2009 at 5:02 am (UTC 0)
As if he, and you guys, didn’t have enough to cope with! That just plain sucks and I wish there was something more to say or do. *hugs*
aiabx says:
October 19, 2009 at 8:58 am (UTC 0)
Tell Jon to stop being greedy and leave some afflictions for someone else. He’s got enough.
Richard says:
October 19, 2009 at 11:18 am (UTC 0)
Probably you and your doctors already thought of this, but is there any role for botox to reduce the spasm of the afflicted muscles?
Bev says:
October 19, 2009 at 11:48 am (UTC 0)
As if all the previously known concerns weren’t plenty more than enough for all of you to be getting on with. One d*** overwhelming challenge after another. Don’t know what to say except I think you two are amazing parents, but I wish you didn’t need to be quite so much.
Peter says:
October 19, 2009 at 2:43 pm (UTC 0)
Thanks for all the kind comments.
@Richard: Jon’s specialist, Dr. Narayanan, is well-versed in using botox and has used it on Jon during operations. In this very session, we discussed using it or not (he chose not) on Jon’s tight-yet-ever-growing hamstrings, but it did not come up for the scoliosis. I don’t think that they can expressly locate the specific muscles or fragments thereof causing the tension. That said, I imagine playing with a drug that causes three months of localized paralysis at the base of the spine could be a risky strategy, especially since it isn’t necessarily precise and those very muscles are likely a factor in Jon’s torso core strength. Just a guess on my part, you possibly have more insight.