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Thread: progression in brace

  1. #1
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    progression in brace

    My daughter just had her checkup 2 days ago and her curve progressed from 27 degrees to 36 degrees in 5 months. I know that 36 degrees isn't horrible, but if she progressed 9 degrees in 5 months, she could very well progress another 9 degrees in the next 5 months. I don't know why it progressed so much She's 14 years old - still growing. She wears the Boston brace and wears it as she is supposed to. She is so compliant at wearing it - better than I would have ever expected her to be. I'm so confused now. She only grew 1/2 inch in that 5 months. She is a ballet dancer and takes a Pilates class once a week. She's allowed to have her brace off 4 hrs a day. There are some days, because of her ballet schedule, that she might have her brace off 4 1/2 or 5 hours a day, but she's always made it up on the days that she doesn't do ballet. We have kept track on a calendar and she actually was wearing her brace more than she was supposed to. Her scoliosis is inherited. I had surgery when I was 15 and her brother also has it, but it's mild. But, I wonder if the ballet and pilates is making it worse? Ballet is her passion. I have so many questions. What would make her back get worse? Is it the ballet, the pilates or is it just because it's inherited from me and it would get worse anyway? She's worn the brace for 3 years and up until 5 months ago, her curve only increased 2 degrees. So, in 5 months it increased 9 degrees. Is that unheard of? Do I let her continue doing ballet and just take the chance that her curve will progress to the point where she will need surgery? I hate this. I hate not knowing what caused the progression and not knowing how to help her. Will having surgery be an end to ballet for her? She would be devastated. I'm so frustrated. Has anyone experienced anything similar?

  2. #2
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    Hi and welcome. I am sorry your daughter progressed. I'll try to answer your questions and hope others chime in.

    The bottom line on many of your questions is that surgeons cannot answer them with anything close to evidence. And if surgeons can't answer them then NOBODY can. They are the only game in town. Sorry to say but that is the state of affairs.

    Quote Originally Posted by scolio1964 View Post
    My daughter just had her checkup 2 days ago and her curve progressed from 27 degrees to 36 degrees in 5 months. I know that 36 degrees isn't horrible, but if she progressed 9 degrees in 5 months, she could very well progress another 9 degrees in the next 5 months. I don't know why it progressed so much She's 14 years old - still growing.
    Increased progression rate in AIS is linked to the growth spurts.

    She wears the Boston brace and wears it as she is supposed to. She is so compliant at wearing it - better than I would have ever expected her to be. I'm so confused now. She only grew 1/2 inch in that 5 months. She is a ballet dancer and takes a Pilates class once a week. She's allowed to have her brace off 4 hrs a day. There are some days, because of her ballet schedule, that she might have her brace off 4 1/2 or 5 hours a day, but she's always made it up on the days that she doesn't do ballet. We have kept track on a calendar and she actually was wearing her brace more than she was supposed to.
    This would not be the first case of progression in the face on complete compliance. It is known that some cases are refractory towards bracing. For example, bracing is thought to be futile for scoliosis associate with Marfans syndrome. Also, it may be that the 1% of girls who have a Scoliscore of >180 are refractory towards bracing. Who knows.

    Also, my one kid was stable for a 6 month period (low 30*s) and then got a brace and progressed 8* in the following six month period when she was completely compliant with wearing her night-time brace. I do not attribute her increase to her brace wear. You just can't win some times.

    Her scoliosis is inherited. I had surgery when I was 15 and her brother also has it, but it's mild. But, I wonder if the ballet and pilates is making it worse? Ballet is her passion. I have so many questions. What would make her back get worse? Is it the ballet, the pilates or is it just because it's inherited from me and it would get worse anyway?
    I suggest there is no evidence whatsoever that ballet, PT etc. have made her back get worse. My kids did no meaningful exercise and their backs got worse. My one kid had a curve that moved 5* a month for the entire observation period until fusion. It never moved slower than that based on sequential radiographs.

    She's worn the brace for 3 years and up until 5 months ago, her curve only increased 2 degrees. So, in 5 months it increased 9 degrees. Is that unheard of?
    No. That is <2 degrees a month. My one daughter's curve moved 5* a month as I mentioned and the other daughter's curve moved between 0* and ~4* a month. Also the stability before 5 months ago may have been due to her not being in a growth spurt as opposed to the brace wear but nobody can know that.

    Do I let her continue doing ballet and just take the chance that her curve will progress to the point where she will need surgery?
    There is not a lick of evidence that ballet is related to the progression. In fact some folks think PT lessens progression though there is a vanishing amount of high quality evidence for that.

    I hate this. I hate not knowing what caused the progression and not knowing how to help her. Will having surgery be an end to ballet for her? She would be devastated. I'm so frustrated. Has anyone experienced anything similar?
    Her genetic make-up is what is causing the progression as it is for all kids with AIS as opposed to Chiari, neuromuscular or congenital issues and such.

    You have a right to be frustrated. It is frustrating.

    As to fusion ending ballet, it might matter where the curve is. If it is in the thorax then maybe not... I don't know. I just know that my kids are fused through the thorax and have a near-normal range of motion. They look and feel normal but they don't do ballet.

    Good luck.
    Last edited by Pooka1; 01-22-2011 at 02:34 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #3
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    Thank you for your comments. I really had a lot of faith that the brace would prevent her from having surgery, but I'm having doubts now. Her curve is in the thorax region and her doctor said that it's in a great spot for surgery - I'm not exactly sure what he meant by that!! My son's curve is in the lumbar region and the doctor said he'd rather have her bad curve where it is than have his small curve.

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    Quote Originally Posted by scolio1964 View Post
    Thank you for your comments. I really had a lot of faith that the brace would prevent her from having surgery, but I'm having doubts now. Her curve is in the thorax region and her doctor said that it's in a great spot for surgery - I'm not exactly sure what he meant by that!! My son's curve is in the lumbar region and the doctor said he'd rather have her bad curve where it is than have his small curve.
    You're welcome.

    I think many parents get the wrong idea about bracing. I know I did. While there are some surgeons who think it can work, they will not claim there is good evidence it works.

    I can try to explain the comment about curve location. It is a small mercy that most AIS curves are thoracic because that area does not move all that much anyway. As I mentioned, my kids have ten levels fused and they look and feel normal and are not expected to need any more back surgery in their life. I hope the newer surgical techniques improve the long term on the lumbar cases.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    I *think* Pooka is saying that it's very hard to prove with research whether bracing (or, really, any treatment other than surgery) works because of the difficulty of researching scoliosis and not due to anything specifically about bracing. That's true of lots of things in medicine - it's just a very hard field to do research in.

    But that doesn't have anything to do with your with daughter's treatment, which is based on your doctors' assessment of your daughter's likelihood to benefit from bracing based on years and years of training and experience. I just didn't want you to think that we somehow knew something that your doctor didn't know - we're just parents without any medical training. If you doctor feels that bracing is a good treatment for your daughter, that's the only advice you need to take.

    There are lots of parents on the forum who have daughters in ballet - hopefully one of them will come by and offer advice. (I have a 22 year old son, and he doesn't even *watch* ballet )

    The only thing I've read linking ballet to scoliosis talked about the strict exercise and diet regime somehow delaying the first period. I don't know enough to interpret that information, but it might be worth talking to your doctor about. I've never heard anything linking pilates to scoliosis.

    One other thing I've sometimes seen (and seen with my son) is that kids can measure up or down on a single xray even though their curve isn't changing. There's just alot of wiggle room in the xray measurement. Mostly doctors rely on a pattern of progression and not just a single xray showing a bigger curve. So, don't worry too much about a single xray. Her underlying curve might not have changed, or it might have changed just a few degrees.

  6. #6
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    Hi Scolio1964,

    Sorry to hear that your daughter is progressing. Bracing can be very effective, however, for some people it just doesn't work for whatever reason. Sometimes because the curve is too rigid to get a good correction in the brace, etc. That is probably not the case with your daughter in ballet. Sometimes kids won't tolerate the bracing. Some researchers believe some genetically driven curves may not be responsive to any bracing.

    Perhaps your daughter is now in her adolescent growth spurt. That is typically the year prior to her first period. This can be delayed in ballet dancers in serious training. While some braces can hold a curve prior to the large forces of the adolescent growth spurt, some may not be able to overcome the curve growth associated with this great increase in growth. Also, even though your daughter "only grew" a half inch in five months, there would also be horizontal growth associated with the growth in the spinal curve. So she actually is growing a lot.

    My first question is whether or not this brace she is wearing is still her first brace. Three years is an awfully long time to be in the same brace. Hopefully she has been refitted for a new brace while she has been growing all this time. If a brace doesn't fit anymore, the pressure points may not even be hitting the spine properly to even exert a force contra to the curves.

    I would also suggest checking the straps to make sure they are holding properly. I used to check every night to make sure my daughter had put her brace on properly and the straps looked nice and functional...but it turned out that in the morning the velcro had let loose and hadn't been holding tightly during the night. The velcro was just not holding any force in the straps. This was after about six months of wear. We had to get the straps replaced. I had to get straps fixed on her second brace when the hardware gave way. I had no idea there was any maintenance associated with these braces!

    I doubt your daughter would have to give up ballet as something she enjoys doing if she ended up fused, but unfortunately it is unlikely she would become a professional ballerina. They need all the natural flexibility in their spine plus some! Talk to her doctor because each fused person is different in whether they can continue with dance or not. I'm sure it depends a lot on how long the fusion is.

    I personally believe ballet has helped my daughter in her bracing, although I do think that girls with hyperextended joints who start ballet intensely should be given a warning that they should be watching for the first initial signs of scoliosis as it is very prevalent in them.

    Good luck to your daughter!

  7. #7
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    I question the suggestion that there is ANY evidence whatsoever that ballet exacerbates scoliosis in any kids including those with hyperflexible joints.

    Nobody has laid a glove on ballet (or anything activity or lack of activity for that matter) in terms of exacerbating AIS.

    There is no evidence to suggest you should be second guessing your daughter's participation in ballet. If anything, PT is thought to lessen the chance of progression though that is FAR from proven.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Well, explain why so many ballerinas and rhythmic gymnasts with hyperextended joints have scoliosis? Do they have scoliosis at that rate with hyperextended joints when they don't participate in ballet or rhythmic gymnastics? I think it simply shows that there is a big environmental influence if you have the right genetic makeup. And of course, you don't want to hear that.

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    The people who stay in ballet and rhythmic gymnastics are the ones who are successful in it and the ones who are successfully in it are the ones who are good at it for whatever reason INCLUDING having the characteristics that are the SAME as those with collagenic issues that go along with some scoliosis.

    You are confusing coincidence with causation.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    The people who stay in ballet and rhythmic gymnastics are the ones who are successful in it and the ones who are successfully in it are the ones who are good at it for whatever reason INCLUDING having the characteristics that are the SAME as those with collagenic issues that go along with some scoliosis.

    You are confusing coincidence with causation.
    That's incorrect because scoliosis occurs long before anyone is being cut or self-selecting out from these activities due to not having hyperextended joints. In the US, that would be in 16-18 year olds in ballet....and Americans have lots of ballerinas that are not hyperextended. Scoliosis shows up in these girls a lot earlier than 16 typically.

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    Hypermobility occurs ahead of scoliosis in AIS. That is what keeps these kids who start early in ballet or rhythmic gymnastics or whatever because they are suited to it.

    Years and years of being suited to it result in these kids getting better than their peers on that score at least if that is what is valued in ballet. I can only assume it is based on the claimed number of folks who have scoliosis who are in ballet. Of course I would want to see that corroborated in some manner.

    Who can say that the rate that ballerinas have some collagenic issue is higher than the general population? Is there some reference? This might all be folk science.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    The only thing I've read linking ballet to scoliosis talked about the strict exercise and diet regime somehow delaying the first period. I don't know enough to interpret that information, but it might be worth talking to your doctor about. I've never heard anything linking pilates to scoliosis.

    One other thing I've sometimes seen (and seen with my son) is that kids can measure up or down on a single xray even though their curve isn't changing. There's just alot of wiggle room in the xray measurement. Mostly doctors rely on a pattern of progression and not just a single xray showing a bigger curve. So, don't worry too much about a single xray. Her underlying curve might not have changed, or it might have changed just a few degrees.[/QUOTE]

    Her doctor has said that she will still grow 1 1/2 years after she starts her period. She still hasn't. But, I argue that couldn't she finish growing sooner than that? I really believe that she hasn't started because of the ballet - I've heard that happens with a lot of dancers and gymnasts. She's 14 and I think I grew until I was about 16. If that holds true for her she will be wearing a brace for 5 years. Wow!!

    Her doctor also said that no two doctors would measure the same x-ray the same. I can tell that her x-ray is definitely worse than the last x-ray, but I wonder about the measurement.

    Thanks for your help!

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    Quote Originally Posted by scolio1964 View Post
    Her doctor has said that she will still grow 1 1/2 years after she starts her period.
    As I recall our surgeon said 2 years. If so that is in rough agreement.

    She still hasn't. But, I argue that couldn't she finish growing sooner than that? I really believe that she hasn't started because of the ballet - I've heard that happens with a lot of dancers and gymnasts. She's 14 and I think I grew until I was about 16. If that holds true for her she will be wearing a brace for 5 years. Wow!!
    Hey you may be right about that. I have no idea. Have you asked your surgeon that question?

    Her doctor also said that no two doctors would measure the same x-ray the same. I can tell that her x-ray is definitely worse than the last x-ray, but I wonder about the measurement.
    That's correct and there are any number of testimonials on this forum in evidence of that fact.

    Your daughter may never progress any more. That is certainly possible. Our surgeon says that chronological age is the best determinant of remaining growth though he said that before Scoliscore.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post
    Hypermobility occurs ahead of scoliosis in AIS. That is what keeps these kids who start early in ballet or rhythmic gymnastics or whatever because they are suited to it.

    Years and years of being suited to it result in these kids getting better than their peers on that score at least if that is what is valued in ballet. I can only assume it is based on the claimed number of folks who have scoliosis who are in ballet. Of course I would want to see that corroborated in some manner.

    Who can say that the rate that ballerinas have some collagenic issue is higher than the general population? Is there some reference? This might all be folk science.
    You would think that our researchers would have determined the prevalence of scoliosis in ballet dancers with hyperextended joints versus the prevalence of scoliosis in the general populace with hyperextended joints, wouldn't you? It would be very interesting.

    The same ballet dancers are in my daughters studios that were in the studios when they were four years old. They still meet and greet at ballet functions twelve years later. They do it because they developed a passion for it, and if they didn't have natural flexibility they worked on stretching all the time until they did become flexible. That doesn't mean they developed hyperextended joints, which IS genetic.

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    Quote Originally Posted by Ballet Mom View Post
    You would think that our researchers would have determined the prevalence of scoliosis in ballet dancers with hyperextended joints versus the prevalence of scoliosis in the general populace with hyperextended joints, wouldn't you? It would be very interesting.
    I agree it would be interesting but I would be shocked if anyone did a study on it.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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