SpineCor - Bad Experience in NYC - Replacing Straps

[michael1960]

I was wondering how you and your daughter were doing with the Boston brace. My daughter (Syd) gets a 30 degrees down to 13 degrees correction in the brace. This is in the thoracic region. She was getting a 30 degrees down to 18 degrees in the SpineCor brace. Syd was hoping that we could get the SpineCor down to 13-15 degrees so she could wear only the SpineCor. It is definitely much more difficult for her to wear the Boston brace. It is not so much the primary pressure on the ribs but what bothers her the most is the pressure on the front of her chest at the top of the brace.

I talked with Syd the other night, we discussed the potential outcome (rods/fusion) as well as the VBS hybrid/growing rod as well as the VBS with staples only. I asked her what she wanted to do and she said "surgery" instead of having to wear the brace for the next 6-7 years. But she did say "no rod". So she understands that she needs to get down to 25 degrees consistently for at least 6 months to be considered for staples only. Right now Dr. Betz and Dr. Durrani are both suggesting VBS/Hybrid Rod.

I am sorry to hear your daughter is having issues with both the SpineCor and Boston brace. It is so tough for them to wear it. It would be hard to wear the Boston brace if the correction is better in the SpineCor brace. Syd now thinks the SpineCor brace is great compared to wearing the Boston brace. She wears the SpineCor to school and for after school activities and wears the Boston brace when she is at home and at night.

I hope you get some good news on getting scheduled for surgery sooner. We are still waiting for a response from Dr. Durrani to see if our insurance will cover it.

Good luck
Michael

[michael1960]

This is similar to our situation. Syd was at 36 last year, closer to 30 right now. However, being at 36 Dr. Betz recommends VBS/Hybrid Rod and Dr. Durrani the same but with his self-growing rod. Dr. Betz did say he would consider VBS staples only if she can get down to 25 consistently. I don't know if we can get there but are going to try. Dr. Durrani and Dr. Betz both feel that once it has reached 36 it will want to come back to that same point, even if it gets down in the brace.

Dr. Betz said that if it stays stable she can have surgery in about a year. I need to confirm with Janet that she is officially on the list. She is considered a priority 2, not urgent. He feels it can go as high as 45 (we are talking thoracic so not sure if different for lumbar) and still be a candidate for VBS/Hybrid Rod. However, he said that at her next x-ray, if it increases he will move her to a priority 1 to get her scheduled sooner.

This is one of the things I have learned with treatment, like VBS, there is a window of opportunity. Below 30 or 35 and get VBS. Go above 35 but less than 45 get VBS/Hybrid Rod.

I think one of the key criteria is flexibility, so as our girls get older, their flexibility reduces, maybe reducing our options. It will be interesting to see what we will do if Syd does get down to 25, will be do VBS stapling only or will we decide to wait. Or would that just be a false sense of everything is getting better. That is what Dr. Durrani thinks, false sense it will be ok.

Good luck. Thanks for the message. It is through these forums I learn the most and get the most help.

Thanks