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  • #16
    Originally posted by Pooka1 View Post

    Taking all 20 patients together, the "success" rate was 35%.

    I would change this by saying that I think most studies are focused on trying to stop progression and not necessarily trying to reduce the curve. That is what we were doing. It's sort of coming at it from the other direction, i.e. how many failures were there? Failure generally defined as two consecutive x-rays >5° from baseline.

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    • #17
      Originally posted by skevimc View Post
      I would change this by saying that I think most studies are focused on trying to stop progression and not necessarily trying to reduce the curve. That is what we were doing. It's sort of coming at it from the other direction, i.e. how many failures were there? Failure generally defined as two consecutive x-rays >5° from baseline.
      That is a very good point.

      But I think unless you can show these kids would have progressed anyway during that treatment period, you can't assume the ones that didn't advance >5* were helped by the treatment. For example, my one kid held in the mid 30s* for at least 6 months before she started wearing her brace. Had she been enrolled in Mooney's study during this six-month period she would have been counted in the "success" column for the treatment. And yet back in reality she didn't do a lick of exercise, targeted or otherwise, to achieve the stabilization.

      That's why I find myself persuaded by the Hdugger Paradigm (TM) of looking at reductions and mainly in larger curves in order to have any confidence that the treatment is actually influencing the observed results. And then of course the issue fo long term and permanence has to be tackled.

      This strikes me as a particularly difficult field of research... even including a group of 20 controls who are sitting there just watching the other 20 do the PT (), that is still not enough to know what is going on when the condition is so variable... curves stop and start on their own, curves spontaneously reduce and even disappear, some large curves get to 50* and hang there for decades, etc. etc. etc.
      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."

      Comment


      • #18
        I think it's impossible to know the success rate (rate of halting progression and/or avoiding surgery) in any of these studies. I'm using the reduction rate as a rough measure of relative success. So, a method that produces lots of reductions is likely more successful in holding a curve than one that produces only a few (in people of similar ages, curves, etc.)

        Kevin, do you have a sense why orthopedic surgeons aren't more interested in exercise? I realize that bracing appears more effective in holding curves during rapid progression, but exercise shows some promise in keeping small curves small. I'm just surprised that it's not a hotter field of study.

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        • #19
          Originally posted by hdugger View Post
          Kevin, do you have a sense why orthopedic surgeons aren't more interested in exercise? I realize that bracing appears more effective in holding curves during rapid progression, but exercise shows some promise in keeping small curves small. I'm just surprised that it's not a hotter field of study.
          I will look forward to Kevin's answer for sure.

          I think to show PT is effective in keeping small curves small, you would need an impossibly huge study group. First, this group of small curves has a fairly high rate of spontaneous decrease and even complete resolution. Second, even when adding in moderate curves, ~90% of curves are not going to be surgical. So what a study would need to show is that the ~90% is raised to something like 95% or better avoiding surgery in order to show an effect from PT as far as I can tell. And that is a tall order.
          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."

          Comment


          • #20
            Originally posted by hdugger View Post

            Kevin, do you have a sense why orthopedic surgeons aren't more interested in exercise? I realize that bracing appears more effective in holding curves during rapid progression, but exercise shows some promise in keeping small curves small. I'm just surprised that it's not a hotter field of study.
            Certainly an argument can be made that there are no RCT's looking at a specific exercise therapy. But I think the number 1 reason surgeons aren't interested is 'clinical dogma'. Look at any national organization or information website on scoliosis. The ones that even mention 'exercise' all say the same basic thing "exercise can help muscle tone but can't affect the curve" or it is thrown in with chiropractors (which are not respected by MD's anyway) in the "alternative therapies" classification. Even the Scoliosis Research Society only mentions Observation, Bracing, surgery under "what are my treatment options.

            There are 4 papers that started this trend. Shands 1941; Stone 1979; Casella and Hall 1991. And when added to brace Carman 1985. IMO, these four papers have set in stone that exercises are only useful for posture, maybe pain management and general heath.

            SOSORT and IRSSD certainly are interested in exercise. But active surgeons don't have time to go to these smaller conferences which is of course where most of the data in favor of exercise is presented and debated. Therefore, most practicing docs don't know about what's being discussed. Or, if they do then it's on a very superficial level.

            To grab the attention of surgeons you have to publish in Spine. You won't publish in Spine until you have at least 100 patients (plus 50-100 controls) with a high risk for progression and about 4 years of follow up data to prove that it is effective and long term. But you won't do all of the above until you have three or four busy clinics that are willing to send you the next 100 patients through the door. And you won't get that until...... I think you get my point.

            Short term, messy studies that make huge overstatements do little else but detract from real evidence. (Starting a commercial venture doesn't help either). It's why we tried to add as much patient information in our tables and did a survivorship analysis and concentrated on a critical discussion of our results. We wanted to show that while our numbers were low, we made a serious scientific effort. This would also allow us to have faith in our own findings. A few other studies have done this as well (for example, den Boer "Side Shift Therapy"). But until these types of studies are the norm OR you get a huge data set (and preferably both) exercise therapies will most likely remain an "alternative therapy"

            Sorry for the long post. As a rehab scientist, exercise therapies are routinely placed at the "kid's table", so it's a hot button for me. I could go on and on about this. The introduction of my dissertaion included a brief history of scoliosis management. I found references back into the mid 1800's. One common theme... Brace versus exercise.

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            • #21
              Not overly long at all. That was very helpful. I had a similar discussion with my masseuse (who did a great deal to improve my son's appearance and, we think, to slightly reduce his main curve) and she said something similar about why massage wasn't an approved therapy. You have to show that it works in the scientific papers, and individual practioners just don't have the number of clients where they could show results, because they aren't sent enough clients because they don't publish, and so on and so on. It is all very frustrating.

              But, physical therapy *has* broken through for resolving other back problems, and now is routinely mentioned as a better solution than back surgery. (I understand that it's also more effective for other back problems). But, I wonder if the turning point for scoliosis will be the point at which some set of practices is:

              * freely shared and available to physical therapists
              * regularly showing reductions in significant curves (again, because it's so much easier to publish these studies)
              * showing long term results

              I realize that exercise is not going to be *the* solution, but I would like to see it developed as a viable treatment for some subset of scoliosis patients. And I'd absolutely like to see it vetted enough that it is routinely offered to children with small curves during the "watch and wait" period, and to adolescents who reach maturity without requiring surgery.

              Do you have a sense whether there's a subset of the scoliosis population for which exercise is less effective? I realize you probably don't have a lot of data points in any category, but we've talked here about whether exercise might be less effective for congenital scoliosis and/or for patients with connective tissue disorders.

              Comment


              • #22
                Originally posted by skevimc View Post
                I would change this by saying that I think most studies are focused on trying to stop progression and not necessarily trying to reduce the curve.
                By the way, why is that?

                It seems highly likely the reductions in the larger curves were due to the PT (though that can't be shown rigorously).

                Has the PT community collectively ruled out curve reduction as a goal for some reason?
                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."

                Comment


                • #23
                  Originally posted by hdugger View Post

                  But, physical therapy *has* broken through for resolving other back problems, and now is routinely mentioned as a better solution than back surgery.
                  I thought of this last night as well. PT has broken through and is the first choice by doctors for low back pain.

                  We also needs to present at PT conferences instead of surgeon conferences. PT need to get excited about this and we're un-intentionally keeping it from them.

                  Originally posted by hdugger View Post
                  And I'd absolutely like to see it vetted enough that it is routinely offered to children with small curves during the "watch and wait" period, and to adolescents who reach maturity without requiring surgery.
                  DING DING DING. We have a winner!! This has become my main argument. Give me (research) all of your patients during the watch and wait period. If after 4-6 months there is progression, carry on with bracing. Nothing ventured nothing gained. But if they don't progress, let me (research) have another 4-6 months. I'll 'buy' my way to skeletal maturity 4-6 months at a time.

                  Some will say, "but the curves are so small you don't know which ones will progress". That's true, but I'll put my protocol on 100 patients and do a retrospective study on 100 watch and wait patients and I bet I'll have fewer that progress to a brace. Then let's do another 100 patients. And another. In two or three years you could have a couple of hundred patients. If a practice wanted to, this study could be done relatively cheaply.

                  I've seen it mentioned here before and believe it to my core, we are missing a huge window of opportunity in curves <25*.

                  Originally posted by hdugger View Post
                  Do you have a sense whether there's a subset of the scoliosis population for which exercise is less effective?
                  Aside from patients with contraindications, the only thing I can say about that is high thoracic curves might not benefit unless there are some very specific exercises. Also, lumbar curves seem to be somewhat resistant. I have no real evidence for any of this though.

                  Originally posted by Pooka1 View Post
                  By the way, why is that?

                  Has the PT community collectively ruled out curve reduction as a goal for some reason?
                  I think because that's the primary goal of bracing as well. And since we are attempting to have an alternative to bracing we use their guidelines.

                  Plus, in the beginning, it's always best to set the bar low. With no real science to suggest that the curve is reducible with strength training, we're just trying to stop progression. If you recruit a patient saying that therapy will reduce the curve instead of just stopping it then people get upset if that doesn't happen. So you say that we're trying to stop progression and if it reduces it, then that's a bonus.

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                  • #24
                    Originally posted by skevimc View Post
                    We also needs to present at PT conferences instead of surgeon conferences. PT need to get excited about this and we're un-intentionally keeping it from them.
                    Yes, exactly. We did actually get a prescription from our orthopedic surgeon for physical therapy during the watch and wait period. But, our physical therapist, while good, did not have enough good information about how to approach a scoliosis patient. If he'd been exposed to some of the studies coming out about scoliosis exercise, my son might now still have a 35 degree curve instead of a 57 degree one.

                    Also, there is a tendency for surgeons to compare their work to "physical therapy" (general case rather than a specific methodology). As long as physical therapists are taking a hit and miss approach, they're always going to come out poorly in this comparison. If, instead, there were a generally agreed upon methodology for dealing with scoliosis, I think these comparisons would be more favorable.

                    Originally posted by skevimc View Post
                    Aside from patients with contraindications, the only thing I can say about that is high thoracic curves might not benefit unless there are some very specific exercises. Also, lumbar curves seem to be somewhat resistant. I have no real evidence for any of this though.
                    [hdugger's ear perk up] Having a son with a high thoracic curve (T2 - T7) I'd be interested in hearing more about the specific exercises for those curves. Our completely unscientific experience has been that two things have made a difference in his curve. One is that his masseuse gave him stretches for reducing his "head forward" posture so that his ear is now 2 inches in front of his shoulder (down from 4 inches in front). The second is that she did some work to drop his shoulder blade down and to the left. He also does two stretches which involve that area. The rest of his PT work is basic core exercise. Has anything else shown promise for high thoracic curves?

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                    • #25
                      Originally posted by hdugger View Post


                      [hdugger's ear perk up] Having a son with a high thoracic curve (T2 - T7) I'd be interested in hearing more about the specific exercises for those curves.
                      Sorry. I should say "undiscovered specific exercises". It was somewhat clear when watching some of the girls with HT curves do the rotation exercises that the movement occurs lower. So it is questionable how much activity the upper thoracic spine is getting. I spoke with a back therapist who attended a seminar I gave back in KC and he was really interested in the protocol. We spoke specifically about curves in different locations. He thought that arm positioning, during rotations, could help target these hard to reach muscles. For example, bringing the arms up to parallel with the floor or higher might activate the upper musculature more. I don't know.. Time to buy a fine wire EMG unit and talk some parents in to letting me stick a bunch of needles in their child's neck and back while they work out.

                      There's one girl I think of who had a HT curve. She did the strengthening and a few other things (her parents were using the kitchen sink approach). But they did some rolfing with her. I'm on the fence about it. But the whole concept is to loosen and release from feet to head. So I think what you are doing with your son is as good as anything. I've heard my mentors say that high curves are a nightmare to try and manage, even with a brace. The shoulder girdle just gets in the way and it's hard to make anything fit.

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                      • #26
                        The cost to treat all of the kids in the W&W group is huge. I suspect that there are somewhere in the neighborhood of 300,000-600,000 new cases of scoliosis diagnosed every year in the U.S. The vast majority of those cases are small curves that will never progress to the point of needing treatment. So, let's be conservative, and say that there are 200,000 new cases per year that will never progress. If you treat them all with some alternative treatment (let's use a conservative cost of $1,000 for the first year), just the first year alone will cost $200,000,000. If those kids are put in braces, you can probably quadruple that cost. And, that's just for a single brace. Most kids require multiple braces during their years of treatment. So, if they get braced (at $5,000 each), and are put in exercise programs (at another $1,000 each), we're talking about somewhere in the neighborhood of $1,200,000,000 for just the first year's worth of kids, for one year of treatment. Let's say all subsequent years put together for those 200,000 kids cost about $1,000,000,000. The total cost to treat those kids is $2,200,000,000.

                        I don't know what percentage of those W&W kids would go on to surgery, but it's got to be tiny. Let's say 5% go on to need surgery (again, probably very conservative, as it's probably like 1%). At $100,000 per surgery, that's $1,000,000,000. If 2% of those 5% go on to need revision (at $200,000 per surgery) , that would be maybe another $40,000,000. So, the worst case scenario for the W&W kids that go on to need surgery is $1,040,000,000.

                        Until there's some proof that the economics make more sense, I'm dead set against treating the W&W cohor with our already severely strained healthcare dollars.
                        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                        ---------------------------------------------------------------------------------------------------------------------------------------------------
                        Surgery 2/10/93 A/P fusion T4-L3
                        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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                        • #27
                          We're already bracing kids with curves of a certain size. So, you're double-counting in alternative treatment something that's already a part of standard treatment.

                          All that's being added is exercise. PT is already standard treatment for other back problems, and it has significantly reduced the cost of treating back problems.

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                          • #28
                            Originally posted by hdugger View Post
                            We're already bracing kids with curves of a certain size. So, you're double-counting in alternative treatment something that's already a part of standard treatment.
                            No I think her analysis is starting with some cohort of newly diagnosed kids and then going forward. None of the newly diagnosed kids is going to be already braced and she is then counting the ones in this new cohort who will be braced.
                            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."

                            Comment


                            • #29
                              Kevin, you mentioned, "Also, lumbar curves seem to be somewhat resistant". Do you have an inkling of why this is? My daughter has a lumbar curve.

                              Comment


                              • #30
                                Originally posted by Pooka1 View Post
                                No I think her analysis is starting with some cohort of newly diagnosed kids and then going forward. None of the newly diagnosed kids is going to be already braced and she is then counting the ones in this new cohort who will be braced.
                                What I meant is that, bracing is now being offered as part of regular medical treatment. We're discussing the additional cost of alternative treatment. So, the "alternative" treatment for this cohort is exercise. Once/if their curves progress enough to require bracing, they'd enter the traditional "medical" cost. Type of brace doesn't effect this cost, as far as I know.

                                So, only the cost for exercise ($1000 per child) is new. All of the other costs - bracing and surgery - are the traditional medical costs that we're trying to avoid by prescribing exercise for children with smaller curves.

                                Beyond that, it's hard to run the evaluation, because Linda's numbers assume every child will be braced, and that's not in accord with any protocol I know. Since I don't have any idea what percentage of children go on to be braced, I can't estimate those numbers at all. But, roughly, the idea is that, if exercise works (big if) you avoid not only the cost of bracing and possibly surgery in children, but you also avoid the burden of other back problems in both pre and post surgical adult scoliosis patients. I can't imagine that those numbers would not work out in exercise's favor (again, if exercise works to keep small curves from progressing).

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