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Thread: More Good Evidence Bracing Works in AIS

  1. #46
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    Quote Originally Posted by Pooka1 View Post
    My reason to lower the Cobb angle trigger for surgery is IDENTICAL to Dr. Hey's reason... to avoid longer fusion to involve the lumbar due to waiting.
    I agree with Sharon on this one, especially seeing what has happened in my personal case. Most of the docs I've seen, including the ones as a teen said I would eventually need surgery. They said I would progress into the 40*+ curve in my 40's. This prediction has come true. The last surgeon I saw said I would progress into the 60*+ in my sixties, then he would do surgery. I'm just hoping that if I live that long I won't need to be fused from C1 to pelvis! As it is, IF they had done it at 16 years old and 39*, I would have needed maybe 4 vertebrae fused. As it stands, the last surgeon that I saw said about 14 vertebrae would need to be fused. I totally agree with lowering the surgical threshhold to at least 40*, and that's what is was with the group of docs that I saw when I was a teen. Why they bump it up to 50* and now some surgeons are bumping it up to 60* is beyond me.

  2. #47
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    Quote Originally Posted by LindaRacine View Post
    As I said, we really need to know what happens to these folks in 20, 30, 40, & 50 years.
    I agree this is the only way to settle anything. All bracing studies will always have this as an Achilles Heel. To the extent that these studies will be few and far between, scoliosis treatment decisions will remain somewhat guessing games in my opinion.
    Sharon, mother of identical twin girls with scoliosis

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  3. #48
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    Quote Originally Posted by rohrer01 View Post
    I agree with Sharon on this one, especially seeing what has happened in my personal case. Most of the docs I've seen, including the ones as a teen said I would eventually need surgery. They said I would progress into the 40*+ curve in my 40's. This prediction has come true. The last surgeon I saw said I would progress into the 60*+ in my sixties, then he would do surgery. I'm just hoping that if I live that long I won't need to be fused from C1 to pelvis! As it is, IF they had done it at 16 years old and 39*, I would have needed maybe 4 vertebrae fused. As it stands, the last surgeon that I saw said about 14 vertebrae would need to be fused. I totally agree with lowering the surgical threshhold to at least 40*, and that's what is was with the group of docs that I saw when I was a teen. Why they bump it up to 50* and now some surgeons are bumping it up to 60* is beyond me.
    Wow. Four vertebrae to 14? There is a testimonial here of a woman with a low 30*s curve at maturity who is now close to surgical as a young adult. She said the surgeon remarked that it wasn't unusual. Technically that agrees with the sentiments that less than 30* is protective against progression but it's very close.

    So far in this sandbox, only Dr. Hey's posts and one or two other surgeons are thinking in terms of cutting loses and lowering the trigger angle. Maybe there are others out there but I don't get that sense from listening to talks at meetings and reading the literature. People with TL curves who can stay above L3 or so with the fusion should be knocking down doors in my opinion. People with T curves should be watching they compensatory lumbar curve for structuralization almost as much or more than their T curves for progression. Just my opinion.
    Sharon, mother of identical twin girls with scoliosis

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  4. #49
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    Quote Originally Posted by rohrer01 View Post
    Then can the medical textbooks explain why my thoracic compensatory curve of 18-20* at skeletal maturity is now 38* and now a structural curve? As far as I know it has progressed 10* in the last five years. The primary curve has progressed some, but not nearly that much. I don't think you can give sweeping generalizations with this disorder. As a sufferer, this is the wall that I keep coming up against. Doctors really need to learn to quit looking at numbers and look more at curve types and individual musculature and associated pain to make better decisions as to what kind of treatment they recommend..
    First off, I'm not a doctor. Second, I don't know your history. But from what I can tell you must have a major lumbar structural curve and an upper compensatory curve? If so, lumbar curves are known to start progressing at 35 degrees at maturity. This doesn't mean all of them will or even most, but there is a noticeably large uptick in the study that looked at untreated scoliosis over a long period of time. So if your lumbar curve was over 35 degrees at maturity you run a larger risk of progression than those with a thoracic scoliosis of the same size. As curves get larger, they can become structural.

    If doctors were fusing those curves early at maturity, along with the loss of flexibility, the patients would end up with problems later on in life with revision surgeries to probably fuse to the sacrum which creates its own problems, from what I can tell.

    Did you wear a brace as a kid? I think it's a shame that kids with lumbar curves aren't being given Providence braces to wear at night. IF the studies bear out, the Providence braces are quite effective at stopping lumbar curves from progressing, and much easier to wear than a daytime brace.

    Also, why do you think you would have only needed four vertebrae fused? That is a very short fusion. Was your curve exceptionally short at that time?


    Quote Originally Posted by rohrer01 View Post
    The medical "professionals" taught bloodletting for many, many years.
    What if it turns out that spinal fusion surgery ends up being the "bloodletting"? We don't know.
    Last edited by Ballet Mom; 11-04-2011 at 10:02 AM.

  5. #50
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    Quote Originally Posted by Pooka1 View Post
    I suggest it is fair to say that not a single person in the known universe would agree to brace their child unless they thought it would avoid surgery for life. Not a single one. That is the sole role and goal of bracing as far as I know. I hope that doesn't put too fine a point on it.

    Thus brace failure is measured in surgery at any point whatsoever. That logically and necessarily follows from the fact that bracing is only done to avoid surgery. You have to disagree that that is the sole reason why bracing it done to argue this follow on. I don't believe that can be credibly argued.
    You've laid out your stance on why people brace quite clearly and there's certainly no desire on my part to argue further on this point.

    A point I'm trying to make with this, is that while the implied, if not explicitly stated, intention/expectation is that any treatment during adolescence would be 'for life', it's a bit short-sighted for doctors and orthotists to only look at 18/end of growth/skeletal maturity. However, if a surgeon says, "the brace should stop progression until skeletal maturity at which point we can begin to manage the scoliosis differently, e.g. fewer x-rays, longer follow-up periods, etc... Then, if 20, 30, 40 years down the road you start to notice progression again, you can address it at that time. (because I should be retired by then)" If bracing is laid out like that, then bracing wouldn't be a failure. It would be a success.

    Quote Originally Posted by Pooka1 View Post
    It seems likely that the odds of needing a revision (or more than one revisions) are IDENTICAL in the braced population and the non-braced population. They appear to be related to things like curve location and bone character rather than if surgery is required due to failed bracing or as an initial treatment.
    Is this true? I could see it being true for 2 patients, one braced and the other not, who get surgery at the same age, e.g. 14yo. Then later in life their risk for revision would be identical. But if a brace/other treatment, stops progression through the growth spurt and puts surgery off for a couple of decades, I'm not sure if the rates of revision would be identical compared to a patient who had their first surgery at 14.

    The reasons you give for surgical revision, I would argue, could be similar to the reasons someone might need surgery later in life after bracing. If a curve progresses because bone quality is decreasing, how would that be a failure of bracing? Does bracing claim to correct osteoporosis through menopause in AIS females?

    Quote Originally Posted by Pooka1 View Post
    If that is the case then bracing success and surgical success can't be judged similarly in principle. The question becomes what is least successful:

    1. bracing plus surgery versus surgery

    2. bracing plus surgery plus revision versus surgery plus revision

    Bracing will always be worse because it is one more treatment and one that explicitly failed.
    I see a third option:

    Bracing at 14yo plus surgery at 50yo v/s surgery at 14yo plus revision at 50yo

    A conservative treatment that puts-off a more extreme treatment hasn't explicitly failed. So long as it has been described in that way. It's why people with other diseases try taking drugs at first before moving straight to surgery.

  6. #51
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    Quote Originally Posted by Kevin_Mc View Post
    A point I'm trying to make with this, is that while the implied, if not explicitly stated, intention/expectation is that any treatment during adolescence would be 'for life', it's a bit short-sighted for doctors and orthotists to only look at 18/end of growth/skeletal maturity. However, if a surgeon says, "the brace should stop progression until skeletal maturity at which point we can begin to manage the scoliosis differently, e.g. fewer x-rays, longer follow-up periods, etc... Then, if 20, 30, 40 years down the road you start to notice progression again, you can address it at that time. (because I should be retired by then)" If bracing is laid out like that, then bracing wouldn't be a failure. It would be a success.
    I see that point. But I suspect if you laid it out like that implying surgery might only be delayed then I doubt you would get compliance given how difficult the treatment is. It is not irrational to suggest 23 hour/day hard bracing for several years is worse that having untreated scoliosis or having certain fusions. PT does not suffer quite as much from this criticism and so is more ethical all else equal.

    Is this true? I could see it being true for 2 patients, one braced and the other not, who get surgery at the same age, e.g. 14yo. Then later in life their risk for revision would be identical. But if a brace/other treatment, stops progression through the growth spurt and puts surgery off for a couple of decades, I'm not sure if the rates of revision would be identical compared to a patient who had their first surgery at 14.
    Well actually the delayed fusion due to bracing will likely require more revisions simply because adults require more revisions than kids. So that is known as far as I know. And its because of issues like longer fusions, more distal end of the fusion into the lumbar, bone character, stiffer spine precluding achievement of better balance in all panes, etc. etc. etc. Linda would know.

    The reasons you give for surgical revision, I would argue, could be similar to the reasons someone might need surgery later in life after bracing. If a curve progresses because bone quality is decreasing, how would that be a failure of bracing? Does bracing claim to correct osteoporosis through menopause in AIS females?
    See answer immediately above. Adult surgeries are more problematic per se. A question would be if fused kids have less issues in the out years compared to unfused braced kids. For example, any segment of the spine that is successfully fused will not experience DDD (or it wouldn't matter if it did). Ti Ed will likely be one of the few individuals to not suffer from DD which has been likened to death and taxes in its inevitability. The flip side is the known or suspected damage from simply having an unfused curves spine over several years not only to the structural curve but to other parts of the spine. We could see a time when if that is documented that it will be unethical not to stabilize curve spines in kids.

    I see a third option:

    Bracing at 14yo plus surgery at 50yo v/s surgery at 14yo plus revision at 50yo
    That is worse because adults have more complications, longer recoveries, and worse corrections in general.

    A conservative treatment that puts-off a more extreme treatment hasn't explicitly failed. So long as it has been described in that way. It's why people with other diseases try taking drugs at first before moving straight to surgery.
    Bracing is not described that way. Bracing is described as a treatment with the goal of avoiding surgery. Insurance would never pay for it if it wasn't meant to do that in my opinion. If bracing puts surgery off to bide time until a fusionless surgery is developed or until they crack the etiology nut and can prevent scoliosis then it is a huge win. If it just delays fusion then that is worse given what is known of adult versus kid surgeries.
    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."

  7. #52
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    Unless kids think brace wear will avoid surgery, I predict ZERO compliance. Less than zero actually and accompanied by open derision.

    So maybe the issue is how honest are parents with kids?
    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 hdugger View Post
    Bracing to halt surgery is a researcher's invention. They choose "avoiding surgery" as an endpoint, because that's the easiest endpoint to measure.

    That endpoint, though, is just one of many reasons a parent/patient might choose bracing. I think the more common reason is to slow/halt progression during a growth spurt. (The same reason that surgery is chosen). Keeping a 20 degree curve from going to 30 degrees is a success even in a theoretical child with no risk of advancing to surgery. Smaller curves are just better - they're easier on the body, and their easier for body image.

    Neither bracing or surgery is forward-looking - it's not about keeping adults off the operating table in the future - it's *only* about keeping a teenagers curve from increasing rapidly during growth spurts. That's why bracing is evaluated only during the teen years, because the emphasis is on the rapid progression of an immature spine. Once the child matures, all bets are off. Adults often need spine surgery, even big spinal fusions, whether or not they started out with scoliosis. No matter what you do - brace, operate, or do nothing - there's no real way to protect adults from that risk. The only thing pediatric surgeons can do is get the kids out of childhood with the smallest curve and healthiest spine possible. Beyond that, it's just a crap shoot.
    Thank you for this. This is exactly right.

  9. #54
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    Quote Originally Posted by Pooka1 View Post
    Unless kids think brace wear will avoid surgery, I predict ZERO compliance. Less than zero actually and accompanied by open derision.

    So maybe the issue is how honest are parents with kids?

    Seek help. I have come to the conclusion that it is the parents of kids with scoliosis that need medical help after dealing with their kids' condition.

  10. #55
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    What is the point of stopping progression if not to avoid surgery? Can brace wear be justified ethically on any other grounds? (rhetorical)

    I am just asking for logical conclusion here. I am merely asking you to think one step ahead. I am suggesting you connect the dots and not avoid the obvious.

    If there is a single parent on this group who does not use the hope of surgery avoidance to cheer on their child in brace wear then I would be shocked.
    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. #56
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    I have often surmised there to be a chasm between the thoughts and feelings of the people who have to wear a hard brace versus the thoughts and feelings of those who don't. Here is a study on just patients... I think someone posted another study and patients and parents but I can't find it and may not be remembering correctly. I highlighted the first sentence of the conclusion section which is relevant to this discussion. Please feel free to post articles with opposite findings but it will not chance a thing on the ground. Nobody needs to read this study or any study to understand this issue after they witness bracing.

    http://www.ncbi.nlm.nih.gov/pubmed/20023605

    Spine (Phila Pa 1976). 2010 Jan 1;35(1):57-63.
    Patients' preferences for scoliosis brace treatment: a discrete choice experiment.
    Bunge EM, de Bekker-Grob EW, van Biezen FC, Essink-Bot ML, de Koning HJ.
    Source

    Department of Public Health, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
    Abstract
    STUDY DESIGN:

    Discrete choice experiment.
    OBJECTIVE:

    To investigate the reduction in the risk of surgery that scoliosis patients would require in order to consider brace treatment as acceptable, and to elicit the trade-offs individuals make between characteristics of brace treatment.
    SUMMARY OF BACKGROUND DATA:

    The effectiveness of brace treatment in idiopathic scoliosis patients has not been established in randomized controlled trials (RCTs). Treatment with a brace can be quite bothersome. Patients' preferences for brace treatment are unknown. Insight into patients' preferences for (characteristics of) brace treatment will be useful for future trials and for the development of braces that may optimize compliance with brace treatment.
    METHODS:

    A total of 197 patients who had completed treatment (brace and/or surgery) for scoliosis were approached for the study, of which 135 gave informed consent. A discrete choice experiment was designed in which patients had to choose between hypothetical brace treatment profiles that differed in following 4 treatment attributes: effectiveness, visibility, discomfort, and treatment duration. A multinomial logit model was used to analyze the relative importance of these attributes. Subgroup analyses were conducted for brace-only, brace-surgery, and surgery-only patients.
    RESULTS:

    The response rate was 86% (116/135). All treatment attributes proved to be important for patients' choices. All subgroups were prepared to initiate treatment with a Boston brace if the brace would reduce the need for surgery by 53%. Risk reductions in a range of 32% to 74% were required for acceptance of a treatment duration of 3 years.
    CONCLUSION:

    Scoliosis patients stated to be prepared to undergo brace treatment only if it provides sizeable reduction of the risk of surgery. Effectiveness and discomfort in wearing a brace were the most important determinants of the choices. These results are important if RCTs would conclusively establish that bracing is effective, and show directions for the further technical development of braces to increase the compliance with brace treatment.
    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. #57
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    Quote Originally Posted by Ballet Mom View Post
    First off, I'm not a doctor. Second, I don't know your history. But from what I can tell you must have a major lumbar structural curve and an upper compensatory curve? If so, lumbar curves are known to start progressing at 35 degrees at maturity. This doesn't mean all of them will or even most, but there is a noticeably large uptick in the study that looked at untreated scoliosis over a long period of time. So if your lumbar curve was over 35 degrees at maturity you run a larger risk of progression than those with a thoracic scoliosis of the same size. As curves get larger, they can become structural.

    If doctors were fusing those curves early at maturity, along with the loss of flexibility, the patients would end up with problems later on in life with revision surgeries to probably fuse to the sacrum which creates its own problems, from what I can tell.

    Did you wear a brace as a kid? I think it's a shame that kids with lumbar curves aren't being given Providence braces to wear at night. IF the studies bear out, the Providence braces are quite effective at stopping lumbar curves from progressing, and much easier to wear than a daytime brace.

    Also, why do you think you would have only needed four vertebrae fused? That is a very short fusion. Was your curve exceptionally short at that time?
    5



    What if it turns out that spinal fusion surgery ends up being the "bloodletting"? We don't know.
    My original major curve was 39* from T1 - T6 and the compensatory curve was very minimal. I would now need a fusion to from T1- L2. So MAYBE it would have been 6 vertebrae at most, but when they were talking about it they hadn't decided, then they decided to wait instead of fuse. My lumbar region was completely fine, although I now have DDD in L5 - S1. So take it for what it's worth. No lumbar curve here. They talked about bracing, and to be honest, I would wear a brace to this day IF they could make one for me that would alleviate some of this pain. Unfortunately for me, as a kid, no one believed me that my back "hurt" and I wasn't taken to any doctor at all until I was 16, too late skeletally for bracing AND they said the curve was too high for any brace to help. Like I said, I'm not against bracing, but I think surgery should be an option, too, and at least in my case, it wasn't. We don't all fit into the same cookie cutter. If asked if I would have braced my kids had they gotten bad enough? Probably. I'm not really taking sides in this debate you have going on here. I'm just trying to help everyone to see that as it stands, there are no sure answers to this problem. So being heated about it either way isn't going to solve anything. Bringing out case studies of many individuals and compiling that data "might" be helpful, but still wouldn't fit every scenario. Who knows, maybe bracing and fusing will both be the bloodletting and they will come up with some vaccine (as per Dingo) that can innoculate future generations.

  13. #58
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    Quote Originally Posted by hdugger View Post
    I think rohero has a high thoracic curve, like my son's (unless that's the compensatory one). Those are considered unusual curves (and more unusual, because I believe hers is left-facing), and I don't think they fit into the normal progression pattern. My understanding is that they're more likely to progress then a regular thoracic curve, and they don't brace.

    Rohero, if your case is anything like my son's, I think doctors are a little hesitant to fuse these curves (especially with hyper/hypo kyphosis) because of the high risk of creating neck problems. My son was 20 degrees more than you as a teen - well into the surgical threshold - and noone has offered him surgery yet. I haven't pressed on that much, because we're not all that interested in surgery either, but I'm guessing that part of the hesitancy is the risk of creating a worse curve in the neck by fusing that high on a kyphotic spine.

    We were told, though, even though his structural curve is very high and short, that he would be fused all the way down the thoracic spine. Noone ever suggested a shorter fusion.
    You are correct that it is LEFT facing. I am extremely hypokyphotic and there is terrible strain on my neck from this condition. The last surgeon I saw was amazed that I could even hold my head up.

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    I have had backaches since about age 8. I have had severe neck pain since I was 12 that only gets worse with time. As these curves progress, I am now getting rib pain and shoulder and arm pain. All I would hope for with any treatment would be pain relief. period... Earlier, when I first started the forum I was talking to mamamax about her brace and was hoping that somehow I could be fitted for one simply for pain reduction. I have lost hope of that due to the unusually weird configuration of my spine. It seems surgery is my only option now, but I have to wait until I am even worse (yeah), although I get injections for the severe muscle spasms. I have such a mass over my left upper trapezius that they can't break it up. Docs are in thought of how to approach this as PT has failed and injections have failed. The really sad part of this is that as the muscles get released, I develop more pain in my actual spine. So, for me, I wish they had fused me as a kid. Then my body wouldn't have had all this time to grow all of this scar tissue or whatever it is. My doc yesterday said it feels like I have a mesh under my skin there surrounding my upper left shoulder, neck, scapular area. I like to read these debates, though, because it gives me some insight that I can take back to my doctors. I hope you all don't mind me butting in with my personal experience.
    Last edited by rohrer01; 11-04-2011 at 04:06 PM. Reason: typo

  15. #60
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    Quote Originally Posted by rohrer01 View Post
    I hope you all don't mind me butting in with my personal experience.
    I have always considered you a valuable contributor to every thread on which you post. Every testimonial is important. None are irrelevant. :-)
    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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