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Thread: Can conservative treatment permanently reduce or eliminate AIS curves?

  1. #46
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    Quote Originally Posted by Dustin76 View Post
    It also means seeking out those who have been out of brace for month/years/decades to hear their stories and see how they are holding up.
    Without dated radiographs expertly analyzed, you are likely to get solid nonsense when asking folk what's going on.
    Sharon, mother of identical twin girls with scoliosis

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  2. #47
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    Quote Originally Posted by LindaRacine View Post
    If you post your children's experiences, no one will have any issues with your posts. Same goes for everyone.
    There are tons of threads/posts on this forum that discuss the ins and outs of scoliosis that are not specific to personal experiences. Everything I am posting at least indirectly to my kids, since my research questions have helped guide the treatment plan for our kids.

    I have seen one person that has free reign to say anything on this forum, no matter how condescending or disrespectful, and that has nothing to do with experiences of her kids. Yet if I push back against the claim that AIS curve reduction is impossible, I'm getting a warning to only post about my kid's direct experiences. Well, the matter of the possibility of AIS curve reduction does relate to our kid's cases. If AIS curve reduction is happening, then that makes me think that EOS curve reduction is much more likely with bracing than without bracing. EOS curve reduction is just harder to "prove" since some EOS cases improve with no intervention.

    There are a lot of interpretations of the literature out there, even among the most qualified experts, but challenging the interpretation of one member of this forum who has no medical training whatsoever, gets me warnings to stop talking about a very relevant scoliosis question - that being: Can AIS curves be reduced and maintained? A valid question that should be up for discussion on this forum. If not, then what is this forum for?

    I've been told that extraordinary claims require extraordinary evidence - which make sense. The more I'm looking into it, it appears that AIS curve reduction is happening at enough of a frequency after the year 2000 and at least after 2005 that AIS curve reduction is no longer an extraordinary claim.

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    Quote Originally Posted by Pooka1 View Post
    Without dated radiographs expertly analyzed, you are likely to get solid nonsense when asking folk what's going on.
    Thankfully, radiographs do have dates on them. And the angle measures that the radiologists apply to the images are expert enough to draw some conclusions. Sure, it's not perfect evidence. But it is of some value to me.

  4. #49
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    A literature review that I just found published in 2016

    Wing-Yan CHAN, Shu-Yan NG, Tsz-Ki HO, Yin-Ling NG (2016) Bracing - Halting Progression or Improving Curves in Adolescent Idiopathic Scoliosis. J Rheumatol Arthritic Dis 1(1): 1-8. DOI: http://dx.doi.org/10.15226/2475-4676/1/1/00106

    (Full text available online)


    The authors of this study conclude:

    "Results show that there has been an apparent improvement in the effectiveness of bracing in reducing surgical rate since 2005. Close inspection shows that the reduction in surgical rate is not due to an improvement over time, but is related to the types of brace. The effectiveness of Boston brace is not consistent over the years. The surgical rates vary and no consistent trend of improvement can be discerned in the last 2-3 decades. The surgical rate reported in 2007 for TLSO was as high at 79% and that in 2014 for Boston brace was 28%. The surgical rates with European braces (Progressive Action Short Brace (PASB), Cheneau derivatives and Lyon/Sforzesco braces), however, are consistently lower, at less than 8%. Similarly, the European braces have been found to be able to improve curves in over 50% of the at risk patients. Bracing does not therefore only halt progression of curves. Given a well-constructed brace, with good patient compliance, improvement of curves in over 50% of the patients is possible, particularly when used in conjunction with scoliosis specific exercises."

    These findings are consistent with other studies that I cited in my literature review: European braces outperforming the Boston Brace, full-time bracing being most effective, specific exercises adding to effectiveness, AIS curve reductions occurring in significant percentages of cases, and AIS curve reduction not seen as an extraordinary claim.

  5. #50
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    Quote Originally Posted by Dustin76 View Post
    Thankfully, radiographs do have dates on them. And the angle measures that the radiologists apply to the images are expert enough to draw some conclusions. Sure, it's not perfect evidence. But it is of some value to me.
    It strains credulity that these anecdotes you are picking up like you stated you were doing are all accompanied by dated radiographs, including very recent ones, expertly measured.

    AIS curve reduction and maintenance is not unknown. But it appears to be accompanied by PT for life; it is probably no coincidence that the papers showing that seem to be coming out of PT clinics. That is no permanent solution if so. Then there is the operatic levels of data selection especially in the cases where the brace has been around for decades. If 0.0001% of patients are successful then that is likely something to do with those patients. My pet hypothesis is that they were really late-diagnosed EOS and doing PT for life. I think there is also some chance that it is known if you put a kid in an extremely uncomfortable brace necessary to achieve a correction, compliance will plummet.

    Let's see if non-PT clinics can repeat the results.

    The last thing is you appear to be implying that when researchers are studying to see if braces can hold curves, if they see that the braces reduce curves, that is some failure of their hypothesis and they ignore those results. If so, that is irrational.
    Last edited by Pooka1; 06-19-2020 at 08:43 AM.
    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."

  6. #51
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    Quote Originally Posted by Pooka1 View Post
    It strains credulity that these anecdotes you are picking up like you stated you were doing are all accompanied by dated radiographs, including very recent ones, expertly measured.

    AIS curve reduction and maintenance is not unknown. But it appears to be accompanied by PT for life; it is probably no coincidence that the papers showing that seem to be coming out of PT clinics. That is no permanent solution if so. Then there is the operatic levels of data selection especially in the cases where the brace has been around for decades. If 0.0001% of patients are successful then that is likely something to do with those patients. My pet hypothesis is that they were really late-diagnosed EOS and doing PT for life. I think there is also some chance that it is known if you put a kid in an extremely uncomfortable brace necessary to achieve a correction, compliance will plummet.

    Let's see if non-PT clinics can repeat the results.

    The last thing is you appear to be implying that when researchers are studying to see if braces can hold curves, if they see that the braces reduce curves, that is some failure of their hypothesis and they ignore those results. If so, that is irrational.
    We've shared our kids images with anyone who has asked and quite a few have already. I don't remove the date from the image and neither do others. Some remove the name, but that's about it. If it is an image taken for exploring scoliosis, then the angle measures are put in by the radiologist. I don't know what else to say about that.

    Do you assume all researchers are dishonest, or just the ones that produce findings that you disagree with? If 1000 kids were braced over time and only 200 meet criteria for a given study and some of those drop out of the study for whatever reason resulting in 50-100 that end up meeting criteria and finishing the study, this does not equate to the hand picking that you are suggesting.

    Where do you see studies coming out of PT clinics? From what I have seen most bracing happens in hospital based orthotist clinics or private orthotist clinics. I'm also not seeing the PT for life scenario. I am seeing exercises associated with bracing until skeletal maturity. I am not seeing any tracking of continued PT/exercises after bracing ceases, though it could be happening. I would doubt that most would stay consistent with exercises after bracing ceases without routinely being followed though. Though exercises are important, I think you are giving exercises too much credit here.

    It feels a little discriminatory that if someone suggests that advances are being made in an area of a field, the default response is that the people suggesting such things are dishonest. I get it if there is absolutely no evidence for a claim and if it makes no anatomical/physiological/mechanical sense whatsoever. The more I look into it, that just isn't the case here. The studies are there, especially in the last 10-20 years. We can all find problems with any given study and I don't discount everything that you are saying. But I will have to disagree with the level selectivity that you seem to see. The researchers that happen to look at the possibility of curve reduction are not following a different method of study participant inclusion than what is standard. These studies have similar downfalls as most studies in general. Within the literature "trainwreck", there is still enough to suggest that curve reduction is happening in AIS at a significant enough frequency (especially with the right braces in the most skilled hands) for me not to dismiss, and to include this as a factor in the decision making for bracing our kids. It definitely helped me lean toward a more proactive approach for our kids, and now coming up on a year into it for our kids, we have no regrets so far.

    I plan to post more about our kids cases in the near future. We're still gathering information and will see another pediatric orthopedic surgeon. Genetic testing is in process as well. I don't like leaving any of it at "idiopathic". There is a cause to all scoliosis. We just don't always find it. If we can find it for our kids, maybe we can fine-tune their treatment even more.

  7. #52
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    Quote Originally Posted by Dustin76 View Post
    We've shared our kids images with anyone who has asked
    Your kids have EOS and are IN TREATMENT. You are presently discussing AIS POST TREATMENT. Complete apples and oranges.

    Do you assume all researchers are dishonest, or just the ones that produce findings that you disagree with? If 1000 kids were braced over time and only 200 meet criteria for a given study and some of those drop out of the study for whatever reason resulting in 50-100 that end up meeting criteria and finishing the study, this does not equate to the hand picking that you are suggesting.
    One of the braces has been around for decades yet they are reporting on a relatively few patients. Why?

    Where do you see studies coming out of PT clinics?
    The SOSORTS types include PT-based folks.

    It definitely helped me lean toward a more proactive approach for our kids, and now coming up on a year into it for our kids, we have no regrets so far.
    EOS IN TREATMENT =/= AIS POST TREATMENT.

    I plan to post more about our kids cases in the near future. We're still gathering information and will see another pediatric orthopedic surgeon. Genetic testing is in process as well. I don't like leaving any of it at "idiopathic". There is a cause to all scoliosis. We just don't always find it. If we can find it for our kids, maybe we can fine-tune their treatment even more.
    The only thing I have heard is that Marfan's scoliosis is less likely to be successful than AIS. I would like to know if anything else about specific etiologies is known with respect to specific treatments. You can get genetic testing but there is likely no treatment study that has looked at those specific patients other than Marfans and perhaps a few other known syndromes. But I have not looked at this literature in a while and I may be wrong.
    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."

  8. #53
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    Quote Originally Posted by Pooka1 View Post
    Your kids have EOS and are IN TREATMENT. You are presently discussing AIS POST TREATMENT. Complete apples and oranges.


    EOS IN TREATMENT =/= AIS POST TREATMENT.

    I wouldn't call it an apples to oranges comparison - maybe apples of different flavors. While I am very interested in long-term outcomes for good reason, I am not just addressing post-treatment of AIS. I'm address scoliosis treatment (during and post) in a group that does not get better without intervention. If bracing can address the stiffer curves of AIS, then bracing can probably get the more malleable curves of EOS at a more manageable state as these EOS kids become AIS kids.

    My daughter had curves of 19 and 17 when bracing started and now at 0 and 12 out of brace. She will probably be near 0 for both curves as she hits AIS stage. I like the odds of her at neutral spine when hitting AIS stage and through the rapid growth spurts of puberty when progression risk is highest.

    We could have let her scoliosis to itself. She could have been one of the rare few that got better on her own. Much more likely is that her scoliosis would have stayed the same or got worse until she hit AIS stage. Then she easily could have been somewhere at the 20-30 range when going through the highest risk periods of growth. If she were allowed to get to 30+ during adolescence, then she is looking at maybe 2 degrees per year of progression as an adult.

    We rolled the dice with keeping her mildly overcorrected in brace as she goes through the rapid growth spurs of AIS stage. Crazy as it may seem, the pediatric orthopedic surgeon that we saw at UCSF agreed with this plan and said that he would have recommended the same thing. We have gone with a similar line of thinking for our son but his case is different. I will talk about his case when we know a little more. While the practice may have been to wait to the 25-29 degree range to brace for most surgeons in the past, it seems that that may be changing from what the surgeon said. We are talking to another one soon, actually 2 more at Colorado Children's hospital. I'll post what they have to say.

  9. #54
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    I don't think known cases of EOS get labeled AIS when the child reaches 10 yo. I think it remains a EOS case. Or at least I have never read that in all the reading I have done. I could be wrong.

    EOS is know to be different in many respects from AIS (boys/girls incidence, amenability to bracing correction, etc.). It appears to be a different thing. That is why EOS does not become AIS with age as far as I know.
    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. #55
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    Quote Originally Posted by Dustin76 View Post
    We could have let her scoliosis to itself. She could have been one of the rare few that got better on her own. Much more likely is that her scoliosis would have stayed the same or got worse until she hit AIS stage. Then she easily could have been somewhere at the 20-30 range when going through the highest risk periods of growth. If she were allowed to get to 30+ during adolescence, then she is looking at maybe 2 degrees per year of progression as an adult.
    I just had to jump in here. Kids who hit maturity with curves in the 30s don't progress at "maybe 2 degrees per year" as adults. Kids below 35 degrees or so usually don't progress, or if they do, it's well under half a degree per year. Kids over 45 degrees do progress, normally in the 0.5-1.0 degree range. Most will probably need surgery at some point, but that point could be twenty years down the road. Kids between 35 and 45 are a huge gray area. It's probably safe to say that most (not all) will progress as adults, but it's a math problem at that point. If they're say 38 degrees at maturity and are progressing a third of a degree per year, that puts them hitting 50 degrees when they're in their early 50s, and a lot of docs wouldn't recommend surgery at that point unless the curves are very symptomatic. (On the other hand, if they're progressing at 2/3 of a degree per year, that puts them hitting 50 in their early 30s, and most docs probably would recommend surgery then. Though I've been talking to people lately, and apparently the thinking with some docs now is that well-balanced S-curves just shouldn't be operated on after maturity unless they are causing symptoms, even if they are above 50 or even 60 degrees, because they tend to be pretty stable and any adult progression is slow and intermittent.)

  11. #56
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    Quote Originally Posted by Concerneddad View Post
    the thinking with some docs now is that well-balanced S-curves just shouldn't be operated on after maturity unless they are causing symptoms, even if they are above 50 or even 60 degrees, because they tend to be pretty stable and any adult progression is slow and intermittent.)
    The word symptoms has me thinking back a few decades.....What symptoms and at what frequency? This changes quite a bit over the years. Each of us has to define our own pain and make a judgement call at that time. Is it bad enough for surgery?

    What happened with me in my later 20's was a binding feeling with tightness and aches....not so much acute pain's, but actually manageable with an adjustment. Sometimes, I would get adjusted and be good for a month or so. When I was 29, I did a 6 month period without an adjustment and was really TIGHT. My Chiro adjusted every single level and what a relief that was! I had probably 60/60 curves at age 29. It was manageable without surgery. Remember there were no scoliosis surgeons here at that stage, and no scoliosis PT. I would have been referred to UCSF by an MD.

    By my mid 30's I was getting adjusted once or twice per week and that continued up to age 49. 20 degrees progression over 33 years or .6 degrees per year. I am an S curve patient.

    If I had to do it all over again, I would have surgery at age 42 and skip the degenerative pain stage. That was extremely painful and very expensive. In 2000, there were not that many scoliosis surgeons that could handle my case. I had thoughts of moving down by UCSF during those days. (Set up a tent on the front lawn next to the Hippocrates statue for my scoliosis recovery. I would have made the cover of the SRS newsletter. Ha ha)

    Treating EOS with bracing is like throwing a glass of water on a campfire before the forest catches on fire. This is all fine as long as it produces positive results, but using water to fight forest fires is a science that is just as unpredictable as AIS. The growth spurt can be a scary time....

    I am not really sure why I got so stiff....and have not seen much material on this subject. I got stiffer and stiffer as I aged and my bender x-rays at age 49 hardly bent. I was stretching all the time using a professional stretching chair at my office years ago. Kids are the opposite, they are like rubber. Whatever is causing the curve seems to be easier to deal with as an EOS patient that's not in the growth curve yet.

    One of the things that is concerning is that while the EOS bracing can be successful, by the time the kids have braced all those years, they might be tired of bracing when the growth curve hits in the early teens when it's really needed.

    How much bracing can a person do? I am wondering If one can set a min/max on their Cobbs up to age 10 with breaks, is this a way of getting some brace time off? Or do you brace a 5 year old male all the way through until he is 16?

    Has anyone ever corrected a 20 degree curve, stopped bracing and had the curve relax, then resume bracing for the same result? (Under age 10)

    Dustin and CD, I think both of you will be around here for many years....
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #57
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    Quote Originally Posted by Concerneddad View Post
    I just had to jump in here. Kids who hit maturity with curves in the 30s don't progress at "maybe 2 degrees per year" as adults. Kids below 35 degrees or so usually don't progress, or if they do, it's well under half a degree per year. Kids over 45 degrees do progress, normally in the 0.5-1.0 degree range. Most will probably need surgery at some point, but that point could be twenty years down the road. Kids between 35 and 45 are a huge gray area. It's probably safe to say that most (not all) will progress as adults, but it's a math problem at that point. If they're say 38 degrees at maturity and are progressing a third of a degree per year, that puts them hitting 50 degrees when they're in their early 50s, and a lot of docs wouldn't recommend surgery at that point unless the curves are very symptomatic. (On the other hand, if they're progressing at 2/3 of a degree per year, that puts them hitting 50 in their early 30s, and most docs probably would recommend surgery then. Though I've been talking to people lately, and apparently the thinking with some docs now is that well-balanced S-curves just shouldn't be operated on after maturity unless they are causing symptoms, even if they are above 50 or even 60 degrees, because they tend to be pretty stable and any adult progression is slow and intermittent.)
    Please jump in any time! I have appreciated your input in the past.


    From my review of the literature so far, it looks that it's all a huge grey area as far as progression after skeletal maturity. There are some general statements that can be made that are more likely to be true than not, but I'm not seeing anything like the detailed breakdown that you are suggesting. Do you have any references? I will look back, but I think the 1-2 degrees of progression was a very general statement that was applied to curves that are 30+, meaning 30 on up to really severe curves. It seems like people are all over the place with progression after skeletal maturity and I'm sure there are all sorts of factors at play. My point was that, if my kid's curve can be held near neutral spine for several years, including the high risk for progression around puberty, then chance of progression when bracing ceases at skeletal maturity should be near zero, as opposed to some level of increased risk with a curve of 30+. Again, I can look back, but I think it was 2016 SOSORT guidelines that reported that the most important factor to effective bracing was the amount of in-brace correction - quite a few studies corroborate this as well. There is also some consensus that time in brace is really key to effective bracing. My daughter is doing well in both categories so far so I like her odds. There is also some preliminary evidence including a SOSORT 2017 award winning study suggesting that effectively braced curves hold up better after skeletal maturity than curves that were never braced. I addressed most of this with references in my literature review that I posted.

    Speaking of in-brace correction as being a huge factor to successful bracing, I don't understand why braces keep getting used, such as the Boston brace when they do not generally get the in-brace correction that several European models get. I mean if researchers keep doing studies on Boston braces to check the effectiveness of bracing, of course bracing will continue to not look so good since we already know that one thing that you have to have is good in-brace correction to even have a chance at really good bracing results.

  13. #58
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    Quote Originally Posted by Concerneddad View Post
    I just had to jump in here. Kids who hit maturity with curves in the 30s don't progress at "maybe 2 degrees per year" as adults. Kids below 35 degrees or so usually don't progress, or if they do, it's well under half a degree per year. Kids over 45 degrees do progress, normally in the 0.5-1.0 degree range. Most will probably need surgery at some point, but that point could be twenty years down the road. Kids between 35 and 45 are a huge gray area. It's probably safe to say that most (not all) will progress as adults, but it's a math problem at that point. If they're say 38 degrees at maturity and are progressing a third of a degree per year, that puts them hitting 50 degrees when they're in their early 50s, and a lot of docs wouldn't recommend surgery at that point unless the curves are very symptomatic. (On the other hand, if they're progressing at 2/3 of a degree per year, that puts them hitting 50 in their early 30s, and most docs probably would recommend surgery then. Though I've been talking to people lately, and apparently the thinking with some docs now is that well-balanced S-curves just shouldn't be operated on after maturity unless they are causing symptoms, even if they are above 50 or even 60 degrees, because they tend to be pretty stable and any adult progression is slow and intermittent.)
    And then consider the BrAIST study where they COUNTED a 49* curve with up to 25% growth remaining a "success". And they were allowed to omit mention of the ending range of curves. While these results are not false, they certainly are potentially irrelevant to patients and their parents whose sole role and goal is to avoid surgery with bracing.

    I asked one of the authors what percent of the "successes" were north of 40* and she IGNORED MY QUESTION. Let that sink in. As a scientist myself, I was ashamed and embarrassed for her. Still am.

    ps. Katz et al. (2006) found no correlation between in-brace correction percentage and success. P. 1349. They used in-brace correction as a proxy for curve flexibility which makes one wonder about these hyper-corrections in braces and if that is exquisitely painful in kids with stiff spines.

    http://scanscoliosis.com/wp-content/...s/in_brace.pdf
    Last edited by Pooka1; 06-20-2020 at 10:07 AM.
    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. #59
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    Quote Originally Posted by Pooka1 View Post
    And then consider the BrAIST study where they COUNTED a 49* curve with up to 25% growth remaining a "success". And they were allowed to omit mention of the ending range of curves. While these results are not false, they certainly are potentially irrelevant to patients and their parents whose sole role and goal is to avoid surgery with bracing.

    I asked one of the authors what percent of the "successes" were north of 40* and she IGNORED MY QUESTION. Let that sink in. As a scientist myself, I was ashamed and embarrassed for her. Still am.

    ps. Katz et al. (2006) found no correlation between in-brace correction percentage and success. P. 1349. They used in-brace correction as a proxy for curve flexibility which makes one wonder about these hyper-corrections in braces and if that is exquisitely painful in kids with stiff spines.

    http://scanscoliosis.com/wp-content/...s/in_brace.pdf

    I can't find that Katz 2006 study no matter what I google. Found some by Katz, but not that one.
    ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    Knott P, Techy F, Cotter T, et al. Retrospective analysis of immediate in-brace correction of scoliosis attainable in patients with AIS: a SOSORT initiative. Scoliosis. 2013;8(Suppl 1):O49. Published 2013 Jun 3. doi:10.1186/1748-7161-8-S1-O49

    Conclusions
    Although there is variation among the subgroups evaluated, an effective brace should be able to achieve 50% correction of the curve magnitude, immediately after application. Research that includes patients whose curves has significantly less than 50% correction in-brace are not studies of “effective” bracing.
    ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    The Role of Correction in the Conservative Treatment of Adolescent - 2017
    Idiopathic Scoliosis - Shu-Yan Ng*, Xiao-feng Nan, Sang-Gil Lee and Nico Tournavitis

    CONCLUSION
    Not all PSSE/PSSR programs are supported by high quality evidence, but active self-correction and Schroth
    exercises are supported by Level 1 evidence. Whether all PSSEs are equally effective in the treatment of AIS has yet to
    be determined, as we were unable to identify any studies that investigated or compared the outcome of different PSSEs.
    We were thus unable to draw any conclusion about the role of correction in the outcome of PSSE treatment.
    Conversely, braces with high in-brace correction averages have been found to be associated with good outcomes.
    One study found that an in-brace correction of >40% improved the curves by 7 degrees at the termination of treatment. Thus, in clinical practice, only braces with high in-brace correction should be prescribed, with the objective of improving or
    stabilizing the curve.

  15. #60
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    Quote Originally Posted by Dustin76 View Post
    I can't find that Katz 2006 study no matter what I google. Found some by Katz, but not that one.
    The .pdf is in my post. Here it is again...

    http://scanscoliosis.com/wp-content/...s/in_brace.pdf

    It's in the trainwreck.
    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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