We're not at peace with what the surgeon said.
I've joined a yahoogroup for scoliosis support and some issues have arisen.
These parents are all on this casting bandwagon - there is a euro doc who came here and trained a half dozen specialists on plaster casting to correct scoliosis without surgery. They are scattered around the country (really far from us). It has shown "good results" but sometimes the kids end up needing spinal fusions (where they connect vertebrae, surgically) anyway. It also can cause lung deformity and rib deformity, which we are already facing just from his scoliosis, and possibly in conjunction with the rigid brace. www.infantilescoliosis.org is their website - you can read a bit there.
His surgeon said not to use the brace as much, which we agreed with. But that he wants to wait 6 months to see him again. The group says that it sounds like he doesn't know what he's talking about because Jack's curve can progress, making things so much worse in the future, and that we need to be monitored more closely and have regular x-rays.
I respect that these women have done a ton of research - I do. But, I also seem to be getting conflicting information from the local surgeon (who is THE BEST in the nation, period, at spinal surgery). Then again, he's a SURGEON - and I don't know how many infantile cases he's treated.
WHY can't someone HERE do casting so we could at least sit down and talk to them!???!
I talked (and cried) it out with John and we're getting a second opinion. There's a doctor in Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I called and got his PERSONAL VOICEMAIL.
I'm anxious to hear back from him. I read more today that showed even for those - gosh, I can't even type it without crying - even those who have growing rods and spinal fusion lose 20-30 years on their lifespan because of the decreased lung function. How do I make that decision for my son??? UUGH.
Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 months. They say at least every 4 months.
Also, I dont' understand at ALL why they're calling it congenital when there is no spinal defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's office made ZERO mention of that. :(
I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms was under the age of 10. He's the best at what he does, but I just don't think THIS is what he does. Scoliosis occurs in 1 of 10,000 births. 80-90% of those are mild and self-resolving. So, Jack is 10-20% of 1 in 10,000. That's a FRACTION. I mean - a tiny tiny population in the country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I don't feel like our surgeon is that person.
I'm terrified of making the wrong decision. This is our baby. He has to live with this his entire life. But, I think making an uninformed decision is the worst thing we can do. Even our primary care doc said on day one, "If this is lifelong, you'll probably want a second opinion."
I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about leaving the girls. I'm worried about the financial aspect (Please, God, let our other house sell!) and affording hotels and all the things that go with it. I'm worried about our car doing okay up there and back repeatedly. But, we owe it to Jackson to at least SEE if there's something else.
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