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Thread: TSRH research shows that bracing IS effective!

  1. #61
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    Quote Originally Posted by Pooka1 View Post
    Many things that seem straight forward are not.

    T and L curves are known to have a different progression risk. If you are dealing with small groups of patients and one group is stacked with L curves and the other is stacked with T curves, you would not expect to calculate the same risk of progression for each group with what is known.

    This issue of inadvertently stacking T and L curves in various study cohorts is recognized as having invalidated other studies. Thus it is considered a very serious issue as far as I can tell.

    You can't have one progression risk with a given Risser range and Cobb range without talking about the mix of T and L curves. I mean you can but it might not mean anything if the patients were inadvertently stacked in the historical and present paper.
    There's only 8 T/L or L curves in the entire study. I'd be very surprised if the group of non-progressive, risser 0-1, 20-29* curves were stacked with more than 1 of those 8. It certainly is possible. But then it's an amazing coincidence that they would have also wore their brace more hours per day than the other groups. This group also had a clear dose response for progression risk.

    As far as the range is concerned. I understand how a range would be developed. Yes, it would be statically unlikely that two smallish groups to have the same progression risk. Which is why it's more convincing to me that two small groups, separated by a couple of decades would end up with the same approximate progression percentage. (progressing curves, risser 0-1, cobb 20-29, daily brace wear <7 hrs, ~68%).

  2. #62
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    Quote Originally Posted by JessicaNoVa View Post
    Thanks for saying this. My DD is two weeks into wearing her RSC brace and I really can't imagine doing "nothing" but waiting for her curves to get large enough to require surgery. Yes, that may happen anyway, but we're going to give this brace thing a try.

    Granted, she's only 11 and is pretty self-confident. She even says that she "hardly notices" the brace anymore. Kudos to her.
    I agree with you 100%, doing nothing is the WORST option. Now that there's evidence that bracing can prevent progression (which is exactly what the study shows), I would do whatever it took to help my kid through this bracing period. It won't be easy, but will be well worth it if you can prevent surgery down the road. Good luck and good job for being a proactive parent.

  3. #63
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    Quote Originally Posted by Ballet Mom View Post
    For those who are interested, my daughter is doing very well, she’s still wearing a nighttime brace as she is still only Risser 2. At last month’s orthopedic appt, her Cobb angle of her thoracic curve was measured at 29 degrees and her compensatory curve had basically disappeared. Her doctor said that although they never say that curves are improved, hers looked really good. I certainly agreed. For those who don’t know, she was diagnosed with a 35 degree thoracic curve and a 21 degree compensatory curve at Risser 0 and twelve years of age. She is now fifteen. She had “grown” one inch from her last six month visit, although I believe some of that was due to the disappearance of her compensatory curve (which may be due to a powerful drug she was taking, not the brace, who knows?)

    For those parents who wish to brace and the child will accept the brace, there is every reason to give your child a chance at bracing. I truly believe that. Good luck to all who are bracing.
    Those are encouraging results! I hope for continued success for your daughter and more personal stories like this should help new parents who are trying to decide what to do next.

    There was a reason your old post was brought back to life, she was trying to detract from current events. Try not to rise to her bait, she just wants to continue her mindless posting. On the other hand, it did get you back here with those great results!

  4. #64
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    I've raised this as a concern before, and I guess I'm going to raise it again.

    I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

    I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

    I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

    It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

    I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

    Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.

  5. #65
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    Quote Originally Posted by skevimc View Post
    There's only 8 T/L or L curves in the entire study. I'd be very surprised if the group of non-progressive, risser 0-1, 20-29* curves were stacked with more than 1 of those 8. It certainly is possible. But then it's an amazing coincidence that they would have also wore their brace more hours per day than the other groups. This group also had a clear dose response for progression risk.
    I see that point.

    As far as the range is concerned. I understand how a range would be developed. Yes, it would be statically unlikely that two smallish groups to have the same progression risk. Which is why it's more convincing to me that two small groups, separated by a couple of decades would end up with the same approximate progression percentage. (progressing curves, risser 0-1, cobb 20-29, daily brace wear <7 hrs, ~68%).
    Yes. I think that says both risks were developed in similar patient cohorts with few L curves. This is of course not my field but I can read and when this issue of different propensity to progress between T and L curves was shown, it was very serious. I know you are aware of this but I'll explain for those who are not...

    The inadvertent stacking of T and L curves in different treatment categories was cited as one of the main reasons a large controlled study was invalidated because by sheer bad luck, most of the T curves were in the watch and wait and most of the L curves were braced if I recall. The bottom line conclusion that bracing worked was invalidated because of this which of course isn't to say they proved bracing can't work. This state of affairs drove Concerned Dad to despair, too.

    I hope no papers are published without controlling for this. And the real take home is this is one of many confounders that has been identified. Another potential one is connective tissue disorder patients. Yet another is compliance. Yet another is skill of the orthotist. Yet another is progression after maturity and what might control that. There are almost certainly unidentified confounders yet to be identified. Bracing may work but it is reasonable to suggest nobody will ever be able to show it cleanly. It's a shame it is such a hard treatment given this situation.
    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."

  6. #66
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    Quote Originally Posted by hdugger View Post
    Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.
    Hi hdugger, I want to ask you about what you said, but this thread is about bracing, and focus should not to be lost, so I wrote the question in this thread: http://www.scoliosis.org/forum/showthread.php?t=10900
    It seems that there is not a moderator doing this job, so I do it by myself.

    Regards

  7. #67
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    Quote Originally Posted by hdugger View Post
    I've raised this as a concern before, and I guess I'm going to raise it again.

    I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

    I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

    I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

    It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

    I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

    Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.
    Absolutely! Well said, you should make this a new thread under the parents forum. I think there are certain individuals here who think they know more than the medical profession.

    As I pointed out, TSRH treats more than 6000 cases of scoliosis/year! Who could possibly be more qualified to carry out research?

    We went to 4 surgeons, all of them advocated bracing if the patient is within acceptable and known guidelines.

  8. #68
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    Quote Originally Posted by hdugger View Post
    I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment.
    That issue is going to just have to get in line behind all the other more pressing (in my opinion) issues, most notably almost the entirety of the research section. It is also going to have to get behind the problem of certain lay claims about certain PT modalities as well as the advocacy of bracing curves that have virtually no chance of benefiting from it.

    I'm sorry to say the last takes the cake over your concern and some of the others I mentioned in my opinion. A sense of proportion always.

    I have great concerns about the misinformation and especially how people think the literature is far better than it is. I guess I have to keep occasionally posting that article explaining why most published research results are false. Science and especially medicine are very hard games as you well know.
    Last edited by Pooka1; 07-17-2010 at 02:43 PM. Reason: wrong verb
    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."

  9. #69
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    Quote Originally Posted by Pooka1 View Post
    That issue is going to just have to get in line behind all the other more pressing (in my opinion) issues, most notably almost the entirety of the research section. It is also going to have to get behind the problem of certain lay claims about certain PT modalities as well as the advocacy of bracing curves that have virtually no chance of benefiting from it.

    I'm sorry to say the last takes the cake over your concern and some of the others I mentioned in my opinion. A sense of proportion always.

    I have great concerns about the misinformation and especially how people think the literature is far better than it is. I guess I have to keep occasionally posting that article explaining why most published research results are false. Science and especially medicine are very hard games as you well know.
    For the record, here's a quote from Sharon in a previous post:

    "Corrections by folks who know what the heck they are talking about are (or should be) always welcome. That said, lay people with no relevant training need to carefully couch their comments to avoid appearing like they know what the heck they are talking about. The research section is a misasma in this regard for example. "

    And also:

    "And by the way, I have no relevant training so I'm in the "lay" group also. Everyone here is except McIntire on the topics he has clearly specified."

    Sharon
    You need to be very careful about what you're saying, you've admitted you're a "lay person" like the rest of us, therefore, you're no more qualified than anyone else on this forum to interpret the data. You're so called "concern" may be resulting in parents not pursuing or balking against prescribed medical care.

  10. #70
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    Here's you bias again. You say I've admitted I'm a lay person. I suggest it is OBVIOUS I am not a surgeon. There is no admission required. I don't follow your thinking at all.

    We have folks constantly claiming, surreally as against an actual expert(!), that torso rotation works every time. That same person posts the two papers by Mooney who claims in at least one that no bracing is ever necessary with torso rotation. I must have missed your objection EVERY TIME that statement was made and that paper was posted. Where was your concern about improperly swaying parents then? I think you are highly selective in your criticism.

    We have people posting the most speculative stuff imaginable and some downright dangerous stuff (selenium). This is an actual toxicity concern but where was your concern?

    While I could be forgiven for concluding you don't really have any concern for innocent parents and just want to bash me, I won't do that. I think you are concerned but don't understand the limitations of the literature. Claiming this study proves bracing works is premature. I'm concerned about that.
    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."

  11. #71
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    Quote Originally Posted by hdugger View Post
    I've raised this as a concern before, and I guess I'm going to raise it again.

    I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

    I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

    I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

    It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

    I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

    Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.
    I also concur that this was extremely well put. Kudos -- and many thanks-- to you, hdugger!
    67 and plugging along...
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    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  12. #72
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    Sharon, because of the very dogmatic way you present your arguments, even though I don't think your intent is to come off sounding like you believe you are an expert on the subject, most people are led to believe that is what you are. You might try a somewhat gentler approach sometime-- "from what I've read..." "this is how I interpret the data from that study...", etc. Just a suggestion... I know you have others' best interests at heart, but sometimes it comes across wrong.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  13. #73
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    Quote Originally Posted by Susie*Bee View Post
    Sharon, because of the very dogmatic way you present your arguments, even though I don't think your intent is to come off sounding like you believe you are an expert on the subject, most people are led to believe that is what you are. You might try a somewhat gentler approach sometime-- "from what I've read..." "this is how I interpret the data from that study...", etc. Just a suggestion... I know you have others' best interests at heart, but sometimes it comes across wrong.
    Okay thank you. I'll do a better job at that.
    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."

  14. #74
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    You are very welcome.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  15. #75
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    Quote Originally Posted by Pooka1 View Post
    Here's you bias again. You say I've admitted I'm a lay person. I suggest it is OBVIOUS I am not a surgeon. There is no admission required. I don't follow your thinking at all.

    We have folks constantly claiming, surreally as against an actual expert(!), that torso rotation works every time. That same person posts the two papers by Mooney who claims in at least one that no bracing is ever necessary with torso rotation. I must have missed your objection EVERY TIME that statement was made and that paper was posted. Where was your concern about improperly swaying parents then? I think you are highly selective in your criticism.

    We have people posting the most speculative stuff imaginable and some downright dangerous stuff (selenium). This is an actual toxicity concern but where was your concern?

    While I could be forgiven for concluding you don't really have any concern for innocent parents and just want to bash me, I won't do that. I think you are concerned but don't understand the limitations of the literature. Claiming this study proves bracing works is premature. I'm concerned about that.
    First of all, nobody ever suggested you were a surgeon, how absurd! Now you're trying to twist and bias your own quotes! You made that statement when I said you were a scientist, which you vehemently denied ever making that claim, I could have sworn you were a scientific researcher the way you present yourself.

    Yes, I'm on the attack now because I posted a very legitimate study by a renowned scoliosis institution and you immediately tried to debunk it with misleading information from the get go. Instead of taking the time to find out the actual facts, you started making false assumptions immediately, remember?

    And as for this study, the claim is that bracing stops progression in a high percentage of compliant wearers, it is right there in black and white. Can't you interpret a simple statement?
    Last edited by Sherie; 07-17-2010 at 03:58 PM.

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