Disappointing 2nd opinion

[michele27]

We just got back from Baltimore for our second opinion from Dr. Sponseller. I had checked to make sure he prescribed the Spinecor brace since it seems some of the US doctors who once used the brace no longer do. He said he did, but as soon as the appointment started, I could tell he wasn't a fan of the brace for curves around the 30* mark. He also happened to personally know the doctor my daughter saw first and seemed to just go along with whatever I had already been told. He did say that he would go ahead and brace and that a nightime brace may be a better fit for us now than the Boston brace, but he didn't want to "step on the other doctor's toes" by prescribing it for us. Although her top curve had not progressed, the bottom went from 19 to 23. My husband said I should not have told him we had already seen another ortho just to see what he'd say in the absence of another doctor's recommendation. I am not sure his opinion was as objective as it could have been and feel like we wasted time and money. Maybe he just didn't like that we had come to him only for the Spinecor brace or maybe he is just more conservative in his treatment than I had thought. The reason we chose Baltimore as opposed to Montreal was because of insurance. The Boston brace is simply not practical for my daughter, but I feel like I should do something. It's looking like Montreal is our only option if we want to do Spinecor. That has its own issues(I am terrified of flying, DH owns his own business and cannot take off work to go, expense, insurance issues, etc.). Anyway, I just needed to vent a little. I had such high hopes for this visit, but I'm still at square one. It is now between a nightime brace or Spinecor. Has anyone had any experiences(good or bad) with the nightime brace? Thanks for listening.

Michele

[Pooka1]

My one daughter has been wearing a Charleston night-time bending brace for about a year. It took a while to get used to it but now she has a hard time sleeping without it.

My daughter had a low 30s T curve when she got it. It hadn't moved in the months before the brace, then it moved ~8* in the first six months of wearing the brace, they it stayed stable during the last six months of wearing it.

Clearly the curve does what it wants, when it wants, irrespective of the brace.

That said, I don't think my daughter has AIS. It may have more predictable results with the AIS crowd. Or not.

Good luck.

[mamandcrm]

Hi Michele27,

My daughter wore a Providence brace for about 5 months. She wore it very comfortably with no problems at all but it did not hold her curve (progressed 5-10 degrees in that time frame [difference of opinion between orthos on what her original angle was]).

Good luck to you,

[bscoli]

Brace option

Hi Michelle. Sorry you had a disappointment with your second opinion. Are you familiar with the Rigo Cheneau System (RSC) brace? It is available from Patrick Flanagan, CO, FAAOP of O&P Innovations. He is one of few orthotists who offer it in the US. See: http://www.sdwpt.com/services/bracing-services.php.

Also, here's a four-year case history of a girl (ages 12-16) who used RSC with Schroth. http://www.sdwpt.com/media/docs/Schr...story-3-09.pdf

If you want to talk with a PT about Schroth and RSC, call Spinal Dynamics and ask to speak with Amy Sbihli (414-302-0770.) Best wishes with your daughter and your search for the best option for your family.

[cactigirl96]

about boston braces

i dont mean to take sides with anyone, but the boston brace is not as impractical as it sounds. the doctor maybe right. i wear a boston brace. before i started wearing it, my curves were 33T37L and when i wore it, they were 21T24L. this brace might actually do good things for your daughter. nighttime bracing may not do much of anything for her,

so my advice: at least try to consider this

[michele27]

As it stands, the night time brace is not even an option now. We went in today and her curve has progressed 10 degrees in 6 months. Her top curve is now 40 degrees ! The doctor said the night time brace would be better for lower back curves, so she is going tomorrow to be fitted for a Boston brace. The doctor also said that 20 or 21 hours a day is ok if she is exercising when she is out of it so that takes care of her activities. And she has the summer to wean into it and get used to it before the next school year. Now my concern is possible progression and eventual surgery since she has crossed the 40 degree threshold. I guess it will be what it will be.

Hannah, you are right. I shouldn't be so quick to dismiss it without even letting her try it out. You have the right attitude about bracing! Thanks!!

Michele

[concerned dad]

I am very sorry to hear of the progression Michelle. I was thinking of you yesterday afternoon after reading Hannah's post and I realized you were at your 4 month follow-up mark.

What is a parent to do? This is all so confusing and frustrating.

ON one hand, yours is an example of the failure of the watch and wait approach - your options became limited due to the progression.

On the other hand, How where you to even know your daughter had a progressing curve? I am guessing your doctor wanted to avoid unnecessarily bracing her.

I wonder if there is anything we parents can learn from this other than there are no clear answers.

I also wonder, had the ScolioScore been available to you, and if it indicated a high liklihood of progression, perhaps your doctor would have braced immediately. Or conversely, had it indicated a high liklihood of progression, perhaps he wouldnt have even tried bracing figuring surgery is inevitable.

What a quagmire. I wish you the best.

[michele27]

Thanks Concerned Dad. This, of course, was what I feared would happen with the wait and watch approach. But, the doctor really didn't think it would progress too much and he did say that he wouldn't brace his own child at 27 - 30 degrees. My daughter has grown about 3 inches since Dec., so that may have contributed to the progression, but the second opinion was in March and she measured 32 degrees then so that's quite a jump for 2 months. And she is still Risser 0.

The one thing that I wasn't expecting our dr. to say was that he'd keep her in a brace even if she continued to progress with it. He said it would help by slowing down the progression until we were ready for surgery. I had thought that it was common practice to abandon bracing when surgery was inevitable, but it must be a case by case or doctor by doctor recommendation.

DD is handling the idea of the brace quite well. Of course, once she has it, it may be a different story. Her friend also had an appt. yesterday and found out she has to have surgery almost immediately. They didn't know she had scoliosis until the mandatory school screening this year. So she has a friend who will have gone through the surgery should it ever come to that for her.

The only thing that bugs me is that in January my gut said "don't wait till May", but I was a little preoccupied with the hope of getting her in a Spinecor brace and by the time I realized she wasn't a good candidate(March), May didn't seem that far away. And like I said before, she hadn't progressed hardly at all (2*) in March so who'd have guessed such a different result 2 months later!

The orthotist commented that her spine was very flexible and he was able to manipulate it with his hands and "straighten it right up", so maybe bracing will work for her. But if it doesn't, I will be prepared!

Michele