My 14 year old son was found to have scoliosis last Feb ('03). His back was hurting so we went to our family doctor who thought it was just a muscle strain, but did xrays just to be sure. The doctor came back with his eyes popping out of his head and told us David had a "significant" curve in his spine. Sure enough, with his shirt off, we could just see his back wasn't normal. I felt so guilty that we hadn't caught it earlier, but I hadn't seen him without a shirt for a long time, at least not after he turned 12 or so. And the doctor hadn't done a full exam on him for several months. He assured me that it can progress rapidly, especially during a growth spurt. (My husband still makes noises about the fact that we didn't catch it sooner.) This was at the end of February '03. At that time David had a thoracic curve of 36 degrees and a compensatory lumbar curve of 26 degrees. (He also has a compensatory curve in the cervical area, but they say we can't do anything with that.)
We were referred to a local orthopedist who had David fitted for a Boston TLSO, to be worn 23 hours a day. He hasn't managed to come close to that at all. When he's tried to sleep in it, he takes it off in the middle of the night and throws it as far as he can. It presses on his abdomen so much it makes it difficult to eat - he has esophageal reflux anyway, and this makes it much worse. He's 5'6" now and weighs only 95 pounds, so eating is even more of an issue. He might have averaged 70 hours a week in the brace, during "good" weeks.
Upon his re-check in October, his curves had progressed to 45 degrees thoracic, 37 degrees lumbar. The local orthopedist referred us to an orthopedic hospital that specializes in children (0 - 18) 100 miles away. (I'm still a little wary of mentioning specific places right now.) The doctors there want to truly exhaust all non-surgical options before resorting to surgery, so they have fitted him with a "more aggressive" Boston TLSO. It will push on him even more and they said he has to get up to no less than 84 hours a week in the brace or it won't do anything. More than that would be better. He'll get the new brace a week after Thanksgiving. If he couldn't manage the "less aggressive" brace, how will he adjust to this one?
David doesn't like talking about his scoliosis very much, and dislikes it when it becomes evident to others that he is wearing a brace. "Man, what's up with your back? It's all messed up!" one of his friends shouted at school the other day. Then a teacher chastised him for getting out of a chair to pick up his pencil - she asked him why he couldn't just bend over to pick it up. He just mumbled "Because I can't" and she thought he was being smart-aleck. I recently sent an email to all of his teachers explaining a little bit about his absences recently (MRI's, xrays, orthosis fitting, trips to the out of town hospital). I didn't hear anything back from that teacher.
One thing that has become very evident is that most of the patients who do talk about their scoliosis, casually or as part of a support group, are girls. David thinks he's really weird because he has something that very few boys get, compared to girls. And another aspect of his being a boy with scoliosis is that his growth can continue for a very long time. He might be looking at wearing a brace for at least four, possibly six more years, unless they decide surgery is necessary sooner. In fact, I think that's his fear, that he'll go through the misery of wearing the brace for several years and still need surgery. The new orthopedist says boys do seem to have a more difficult time with bracing.
And David asks if he might still be able to go into the Air Force, in some capacity, with scoliosis, corrected or not.
I apologize for going on and on, but I would like to hear anything about teenage boys with scoliosis and how they have managed their treatment.