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Thread: More Good Evidence Bracing Works in AIS

  1. #121
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    Quote Originally Posted by leahdragonfly View Post
    rohrer,

    I think the one major difference between orthodontia and spinal bracing is the desired outcome: with orthodontia we want/expect the teeth to stay in their new, straightened position. With spinal bracing for scoliosis, the goal is to prevent further progression, ONLY. There is really no hope or expectation of permanent improvement, and all good orthopedists will tell you that if you ask. The brace holds the spine in a straightened position during growth so that the curve does not get worse due to unbalanced spinal loading. So I think with that in mind that gives you your answer of why an indefinite night-time brace once growth is complete is not going to do any good (much as we might like it to).
    If you reread my post, you will see that I agree with your statements. In older orthodontic patients a retainer is used to "hold" a correction. However, in younger orthodontic patients an appliance can actually reshape the jaw and cause correction. We see better results with JIS bracing vs. AIS bracing. I also acknowledge that the jaw is a fixed structure and the spine is not. Therefore, they can't really be compared except on the grounds that more can be accomplished when there is more growth left. I was 16 by the time my scoliosis was found. I was too near skeletal maturity to brace, therefore it would have been useless to try as there was no growth left and I had already progressed as much as I was going to before skeletal maturity. Now, as an adult, my curves are progressing, so even IF I had been braced to hold in the upper 30's, it wouldn't have mattered. I have a curve that was in the low 20's or upper teens that is now nearing or over 40* depending on who measures.

    The thing here that I find difficult to believe with any accuracy is the distinction between JIS and AIS. The ONLY difference that I can see is the age of diagnosis, not age of onset as is implied by age of diagnosis. I developed morning back pain at eight years old, substantial pain at 12 and wasn't diagnosed until 16. I'm classified as AIS. How many AIS people are really JIS people that went undiagnosed? No one can answer that. So to me it's like the orthodontic intervention. My daughter's orthodontist said we could treat her at 7 and she gets to keep all of her teeth or wait until she's a teen and have to pull teeth to make the correction. Obviously younger is better.

    The only way we can get better treatments for our kids is to have better screening techniques. Then and only then could we identify the true AIS cases from the JIS. If they lowered the screening age to like 6 years old instead of 10, that would be helpful (I'm grabbing numbers, as I don't know if kids are even required to be screened at their yearly exams). I fell through the cracks, even as a very young person being screened at school. I would be called back two or three times for rechecks. HELLO? I think the pediatricians and GP's that take care of kids should take this condition more seriously than they do. It seems to get brushed off way too often.

  2. #122
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    Quote Originally Posted by 3sisters View Post
    Perhaps I didn't clarify what I was trying to say. My thought along with this is, I hope to prevent progression in ME, an adult. I'm ok where I am, but the progression could stop now, please! One or two degrees a year, from my current acceptable curves, is not desirable. Do adults with continuing AIS ever talk about employing a night time brace to stop progression?
    That is a GOOD question, as I am in the same boat. My surgeon just says to wait until it's worse, then have surgery. He knows it's progressing and I'm in the "surgical grey area", but offered no advice on how to prevent the progression other to follow it to surgery. Arghhh.

  3. #123
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    Quote Originally Posted by Ballet Mom View Post
    I think the hard thing would be to get the patient who had worn the brace for all those years prior to maturity to continue to wear it. They can hardly wait to burn the brace at the end of it all. It's not like these are totally innocuous devices to wear like a retainer.If you are interested, there are exercises that might work instead of using the brace to stop progression after maturity. You might look into the side shift threads, torso rotations, and perhaps Schroth. None have been proven for sure but it would beat the brace. Probably just keeping your spine strong and flexible would also be of great benefit.

    Anyhow, despite all the fuss that is made on this board, most of the moderate curves do not appear to progress in adulthood. There have been studies in Sweden and I think Norway that show no increase in moderate curves over decades...which is good news. Nothing is going to change the fact that some people get degenerative changes that cause scoliosis progression especially in lumbar curves, even for those without scoliosis, at least at this point in time. Also, those with bigger curves have a higher likelihood of progression, especially over fifty degrees.
    Agree, also. My own particular problem is that I have a rare, left, high, and tight curve that doesn't respond to anything. As a teen, the other thing I was told, besides my "age" was that they didn't make a brace that would help my curve type. Unfortunately, MANY moderate curves DO progress as adults. I don't have marked degenerative changes. There is nothing more degenerative about my spine than any other person my age. So there has got to be uneven loading or some other mechanism going on to cause this to happen.

    One thing my PCP told me when I was in a lot of pain and wanted some sort of support brace to wear just to take the stress off of my muscles was that he was afraid of atrophy. If that happened, it would likely cause progression. Granted, he's not a specialist, but it did make sense.
    Last edited by rohrer01; 01-11-2012 at 04:32 PM. Reason: additional thoughts

  4. #124
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    Quote Originally Posted by Ballet Mom View Post
    It would be very unusual as it would be hard to find a doctor to prescribe one as they are not known to stop progression in adults. There was one lady who did manage to get herself a brace (a Cheneau?) and had a blog about it, maybe someone can remember her name. She could tell you if it helped or not. Perhaps she is still around.
    Here's the gal I was talking about:

    http://www.scoliosis.org/forum/showt...ing&highlight=

    Her blog is linked at the bottom of her signature.

  5. #125
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    Quote Originally Posted by rohrer01 View Post
    Agree, also. My own particular problem is that I have a rare, left, high, and tight curve that doesn't respond to anything. As a teen, the other thing I was told, besides my "age" was that they didn't make a brace that would help my curve type. Unfortunately, MANY moderate curves DO progress as adults. I don't have marked degenerative changes. There is nothing more degenerative about my spine than any other person my age. So there has got to be uneven loading or some other mechanism going on to cause this to happen.

    One thing my PCP told me when I was in a lot of pain and wanted some sort of support brace to wear just to take the stress off of my muscles was that he was afraid of atrophy. If that happened, it would likely cause progression. Granted, he's not a specialist, but it did make sense.
    Some moderate curves do progress, but most don't. This forum is not representative of the whole population.

    Don't I remember a post from you a while back that said the surgeons were actually recommending surgery to you when you were quite young? Perhaps your curves aren't as moderate as you remember at bone maturity?

    It is unfortunate about the high curves, I'd definitely look into vertebral stapling or tethering (as it develops) if I had a progressive high curve in this day and age. I would not have forced my daughter to wear the brace for high curves that is recommended.

  6. #126
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    Quote Originally Posted by Ballet Mom View Post
    Some moderate curves do progress, but most don't. This forum is not representative of the whole population.

    Don't I remember a post from you a while back that said the surgeons were actually recommending surgery to you when you were quite young? Perhaps your curves aren't as moderate as you remember at bone maturity?

    It is unfortunate about the high curves, I'd definitely look into vertebral stapling or tethering (as it develops) if I had a progressive high curve in this day and age. I would not have forced my daughter to wear the brace for high curves that is recommended.
    I know they were "talking" about surgery for me. From what my mom tells me, I didn't want it. She made it sound like if she had pushed the issue a little that they would have done the surgery. I think we were both afraid of it, as my roommate in the hospital was in for surgery the same time I was in for testing and they brought her back screaming in agony. It frightened us both. I know I remember them telling me that when I hit 40* I would need surgery. They were measuring me at 37-39*. I know it went so far as "someone", I'm guessing from the lab, talking to me about blood predonation. So for them to have that talk with me makes me think that I eeked by without the surgery. Surprisingly, when I went to the adult side of the same clinic at age 18, surgery was never mentioned again. Now, after the fact, I wish I would have had it. Don't get me wrong. My life has not been one entirely of misery and pain. I was quite active and outdoorsy (is that a word?). I did a LOT of hiking and other outdoor stuff. But when I had a flare-up it was quite debilitating. In my late 20's is when the pain episodes got more frequent and intense, and as I get older it isn't getting any better.

    The thing that I AM most angry about is that no one caught this sooner. At 8 years old I never told anyone I had a backache. At 12 I complained constantly. My mom knew nothing about scoliosis or that the spine could even "not be centered", but the school nurses that screened me two or three times should have said something. My mom says she never got a note, although I'm not entirely sure. That's how she remembers it. I just hope that people would be more aware of how serious this is and take their young children in for screenings so this can be managed earlier. Like I said before, how many AIS are really JIS? No one knows. How many "young" kids could have been braced and saved the agony of not being diagnosed until they are a teenager or an adult when surgery is ultimately on the table?

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