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Well my brave little Willow is in surgery territory now. She will be fused in early October. Probably the same levels as Savannah, T4 - L1. Her lumbar straightened almost completely upon bending so it's still flexible.
I told the surgeon Willow had stopped wearing the brace in April and that I didn't push back at all on that decision for several reasons I have stated here.
He asked her why she stopped wearing it and she said it stopped fitting correctly. I can only assume this is when her curve started to move again. We know the curve has moved in brace (8* in one six-month period) so that's why I think it started moving again at this time. She was wearing it daily until then.
Of course it could have started moving again because she stopped wearing the brace. We will never know but I still think it was a rational decision on her part. Had there been a better chance of success or a better picture from the literature I would have pushed back.
He assured both Willow and myself that there was never more than a small chance of the brace working. He didn't elaborate but I can guess why from literature and especially as it concerns bracing in general for Marfans related scoliosis (she hasn't been diagnosed with Marfans but she has a hypermobility diagnosis), among other considerations.
Both she and I had been prepared for this since the time when she still progressed from 32* to 40* despite wearing the brace as directly. If I had any hope before that episode, most of it vanished after. It seems reasonable to suggest the brace may have delayed the surgery which in this case is not optimal... she starts high school tomorrow.
But speaking of school, I am not on the ledge about that as much as with Savannah now that I saw her recovery rate. That of course is no guarantee Willow will be back in school at the same time but it gives me hope. She'll be okay any road.
I told the surgeon Willow had stopped wearing the brace in April and that I didn't push back at all on that decision for several reasons I have stated here.
He asked her why she stopped wearing it and she said it stopped fitting correctly. I can only assume this is when her curve started to move again. We know the curve has moved in brace (8* in one six-month period) so that's why I think it started moving again at this time. She was wearing it daily until then.
Of course it could have started moving again because she stopped wearing the brace. We will never know but I still think it was a rational decision on her part. Had there been a better chance of success or a better picture from the literature I would have pushed back.
He assured both Willow and myself that there was never more than a small chance of the brace working. He didn't elaborate but I can guess why from literature and especially as it concerns bracing in general for Marfans related scoliosis (she hasn't been diagnosed with Marfans but she has a hypermobility diagnosis), among other considerations.
Both she and I had been prepared for this since the time when she still progressed from 32* to 40* despite wearing the brace as directly. If I had any hope before that episode, most of it vanished after. It seems reasonable to suggest the brace may have delayed the surgery which in this case is not optimal... she starts high school tomorrow.
But speaking of school, I am not on the ledge about that as much as with Savannah now that I saw her recovery rate. That of course is no guarantee Willow will be back in school at the same time but it gives me hope. She'll be okay any road.
I was not aware of the state of the science when Willow got the brace. The surgeon said he thought it worth at least a try thought there was never more than a small chance it would work for her. He said he never would have given her a 23 hr/day brace because of that.
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