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  • Originally posted by joyfull View Post
    I just read this old thread and I need to add my experience to the mix. I am 57 and have never had surgery. Years ago I went to a gym and did a machine that I sat on and pulled two stabilized handles towards me. It felt great, strengthened my back symmetrically, and helped me "hold myself up." My scoliosis was progressing very, very slowly. It was about 55 degrees by then.

    In 2007 I went to Clear Institute in Minnesota. I've been reluctant to post my experience other than in private messages, since I didn't want to discourage people who may be helped there, but I believe that the program, aside from costing an amazing amount of money for a very long time. actually hurt my back and sped up the progression.

    Dr. Woggon believes that to correct scoliosis you need to restore the natural curves in the neck and the lower back. Therefore the treatment focuses on these areas with no attention to the muscles of the torso. I was given two foam rolls for under my neck and my lower back when I slept. When I expresses concern that the muscles of my middle back were "giving way" to the curve in that position with no support, I was told that I shouldn't worry about it.

    As part of the treatment, weights of about 20 pounds were placed on my rib hump. When I left the program after two weeks of these applications twice a day for 20 minutes while on a stretching table, the hump was slightly diminished. But it soon began to go all the way over to the right side, the concave ribs became more concave and I could feel and see my torso rotating more.

    This is all to say that over the course of my life living pain free with scoliosis, working and raising two sons, I believe that the single biggest factor for me was having strong torso muscle to maintain good posture. I would think that any program that includes this could be very useful.

    If anyone would like more information about Clear Institute, please contact me privately.

    All the best to all,

    Joy
    Hi Joy - Thank you for posting your experience. I understand your reluctance to share, but the more of us that do share our experiences - the better for all of us. I'm also an older adult who has elected to decline surgery - even though it has been recommended since my 20's. Is your scoliosis rotational? The reason I ask is that mine is and my specialists have always said I should stay away from any rotational exercise. Recently however, when questioned more specifically, I was told very very short rotation (vs something like wide sweeps from side to side) would not be harmful.

    I do believe there is something to the torso rotational strength training - and for that matter Clear. I also believe that the successes we see in each, as well as many other therapies should be studied in depth to help determine who would do best with what. The reason such studies are not available is a simple lack of funding - grant money simply does not exist, nor is there a specific scoliosis entity under NIH that would allow for such funded studies. Please someone correct me if I am wrong about that.

    I too lived most of my life pain free but found that by my late 50's that pain was becoming an ever increasing companion. That led me to Spinecor for adults seven months ago and life has been vastly improved ever since. Along with Spinecor I am using some Schroth exercises which seem to strengthen the torso. So, yes I agree that weakened torso muscles may be largely responsible for curvature increase as someone with scoliosis ages.

    Comment


    • What the heck?

      Leahdragonfly

      But I know you are desperate to show that torso rotation works for some reason, so you will take whatever you can find.

      And BTW, why does it have to be a Cybex machine specifically? Do you sell these or something?

      You could really benefit from taking some college courses in epidemiology and statistics, so you could comprehend why a study sample size of 20 subjects can never be generalized to the entire population.
      You are going to have to help me out on this one.

      What's the harm in literally a few minutes of physical therapy per week? It's so simple, easy and cheap that I can't understand your extreme reaction on this topic. What does a gym membership cost, $20?

      In any case read the research. Torso Rotation worked for every child with a mild/moderate curve in the 3 studies. The cutoff is something like 40/50 degrees. A variety of physical therapists say it works (does this write-up sound credible?) and I doubt that this little girl is part of a ruse.
      Video: Eight year old's curve goes from 14 to 8 degrees.

      Let's say it fails. A parent is out $100 and a few hours of time, big deal.

      I'm not against VBS and if my son needs it I'll get it for him, but what does that procedure cost? $50,000 or more (way more?) and the results aren't anything close to guaranteed. In fact the longterm risks are completely unknowable at this point. I mean c'mon the risk/cost ratio is at least 1,000 times worse when compared to a few months of physical therapy.

      When my son started doing strength training (including lying rotations) I could tell within a month that his back had improved. It works that quick. Here is my son doing lying rotations with a 1 pound weight. Normally he uses 5 and I spot him but I had him use a 1 pounder to film him. On the suggestion of a scientist involved in this line of study we've improved this exercise with weights that lock his pelvis flat. This isn't as good as a MedX machine but my son is too small for that and we can do this at home. After 6 months his curve went from 11 degrees to 10 degrees. To me it looked a lot better but at the very least it didn't progress.
      Last edited by Dingo; 11-28-2009, 12:32 AM.

      Comment


      • Dingo,

        My reaction is not extreme, and this has absolutely nothing to do with VBS. I am not at all opposed to the idea of trying torso rotation if it shows some promise. What realy bothers me about your posts is the way you present it to new parents. You tell them it WILL work without fail and I've seen you tell them not to worry about needing a brace, they can just do this miraculous torso rotation instead. This is SO incredibly misleading, and you are doing a terrible disservice to these parents (and their unsuspecting kids). You make these grand statements about torso totation as if you were an authority on it, but in reality, you are a lay parent with no medical background. This is very deceptive, and that is why you think my reaction is extreme.

        The thing that bothers me about the scant literature on torso rotation is the paucity of actual data. 20 kids studied. For 8 months. No control group to compare to. And most importantly, the effects were not long-lasting. The researchers abandoned this research topic. And the little girl in the video you so love to tout, she is also wearing a brace, so DO YA THINK the brace had something to do with reducing her curves??? You simply can not claim with any certainty that the torso rotation caused her curves to reduce.

        So Dingo, I try to ignore your outrageous claims, but this last one is just so over the top that I had to make a rebuttal. You should be more responsible in posting suggestions to other parents. You'd hate to find yourself in trouble for your suggestions.
        Gayle, age 50
        Oct 2010 fusion T8-sacrum w/ pelvic fixation
        Feb 2012 lumbar revision for broken rods @ L2-3-4
        Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


        mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
        2010 VBS Dr Luhmann Shriners St Louis
        2017 curves stable/skeletely mature

        also mom of Torrey, 12 y/o son, 16* T, stable

        Comment


        • anti-bracing?

          Leahdragonfly

          You tell them it WILL work without fail and I've seen you tell them not to worry about needing a brace, they can just do this miraculous torso rotation instead. This is SO incredibly misleading, and you are doing a terrible disservice to these parents (and their unsuspecting kids).
          Don't need a brace? Sometimes I think I'm one of the few people on here who is pro-bracing. I'm not anti-bracing, you are confusing me with Pooka1. If you read through Dr. Moreau's patent application he indicates (if I understand his work correctly) that bracing does work.

          However you might be refering to what Vert Mooney said in 2007. I'm sure that I've quoted him many times in various threads.
          Exercise for managing adolescent Scoliosis

          In most cases the curvature can be reduced. Brief exercises performed twice a week are adequate. Braces are not necessary.
          I do believe that Torso Rotation Therapy is almost universally effective for small and medium curves. If you watch the video I linked to Roger Schwab says "We've seen it work in almost every case that we've had." Perhaps he is lying or just incompetent but based on the studies and write-ups I've read I happen to believe him.
          Last edited by Dingo; 11-28-2009, 01:45 PM.

          Comment


          • if?

            Leahdragonfly

            I am not at all opposed to the idea of trying torso rotation if it shows some promise.
            BTW what do you mean "if" it shows some promise? Studies produced by mainstream scientists and claims made by credible, physical therapists indicate that this easy, inexpensive therapy holds significant promise.

            And where did you get this idea?

            And most importantly, the effects were not long-lasting.
            To the best of my knowledge (correct me if I'm wrong) no longterm study has ever been done on this therapy. I think what you are refering to is this.
            Treatment of adolescent idiopathic scoliosis with quantified trunk rotational strength training: a pilot study.

            Quantified trunk rotational strength training significantly increased strength. It was not effective for curves measuring 50 to 60 degrees. It appeared to help stabilize curves in the 20 to 40-degree ranges for 8 months, but not for 24 months. Periodic additional supervised strength training may help the technique to remain effective, although additional experimentation will be necessary to determine this.
            I guess you were right, the effect wasn't long lasting. Whoops! You missed something.
            Patients received a 4-month supervised followed by a 4-month home trunk rotational strength training program.
            I have the study on my hard drive. Study participants only did supervised, strength training on the MedX for the first 4 months. After that they were sent home to do torso twists with an exercise band. This is what they found.

            Although the patients were instructed in the home-based strength exercise program previously described, we did not effectively monitor their compliance. Our impression through retrospective inquiries was that only about one-third of them were reasonably compliant. Thus, it seemed that the supervised strength training effect lasted at least 4 months.
            What they found was that the positive effects of the MedX lasted about 4 months after therapy was stopped. Sounds pretty long lasting to me.

            I guess that explains this sentence.

            Quantified trunk rotational strength training significantly increased strength. It was not effective for curves measuring 50 to 60 degrees. It appeared to help stabilize curves in the 20 to 40-degree ranges for 8 months, but not for 24 months. Periodic additional supervised strength training may help the technique to remain effective, although additional experimentation will be necessary to determine this.
            Last edited by Dingo; 11-28-2009, 04:17 PM.

            Comment


            • Originally posted by Dingo View Post
              you are confusing me with Pooka1.
              You have a hell of a nerve even suggesting 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."

              Comment


              • 2 more things

                Leahdragonfly

                1 last thing

                The researchers abandoned this research topic.
                Why do you make things up at random? You are substantially wrong.

                A few months ago one of the scientists involved in this research told me that another study was starting in Texas.
                Last edited by Dingo; 11-28-2009, 05:37 PM.

                Comment


                • Originally posted by mamamax View Post
                  Hi Dingo :-)

                  Your upthread balance board link is no longer working.

                  Is this the one you use?
                  http://gofit.net/balance-board.php
                  Thanks for the confirmation on this Dingo. I've just ordered it. Balance, a vestibular thing, is interesting in relation to scoliosis curvatude (think that is a made up word). Anyway, like torso strengthening, when a vestibular imbalance improves, there have been reports of curvatude also improving (and vice versa). I figure why not give it a try - if nothing else as we age, balance can always stand a little improvement :-)

                  Comment


                  • balance and Scoliosis

                    Mamamax

                    Balance problems certainly could be a cause of Scoliosis but it's just as likely that they are a side effect of Scoliosis.

                    Dr. Moreau mentions this in his recent patent.

                    [0066] OPN (also called secreted phosphoprotein-1 , minopontin, or Eta-1) is a phosphorylated glycoprotein containing an arginine-glycine-aspartate (RGD) sequence present in mineralized tissues such as extracellular matrices. This multifunctional cytokine is involved in many pathological conditions.9'10 The presence of OPN transcripts and proteins in postural control centers such as the cerebellum, skeletal muscle proprioceptive sensory organs, and inner ear structures that control of equilibrium(11) is of interest, since AIS patients also exhibit defects in postural control, proprioception and equilibrium.(12;13) High plasma OPN levels have been found in different adult cancers and inflammatory conditions30"33.
                    Maybe OPN builds up in these areas and damages the brain's ability to balance the body. I suppose there are a dozen good explanations and nobody knows for sure.

                    Regardless of any of that standing on a balance board watching TV is at least 100 times more healthful than lying on a couch.
                    Last edited by Dingo; 11-29-2009, 05:07 PM.

                    Comment


                    • I would agree Dingo and think your OPN hypothesis is certainly plausible. As always, what comes first - the chicken or the egg? Either way - chances of achieving (at least) stability may be achieved through strengthening core muscles. Also purchased a balance training disk to use at the office.

                      http://www.amazon.com/Fit-Balance-Tr...9538181&sr=8-1

                      The reviews on the product indicate it also helps develop core muscles while seated at work - I do have an 8-hour desk type of job so I look forward to how that may also help in strengthening core stability. Noted some reviewers stated it helped a lot with pain for those with degenerative disc disease and also seems to help those with pain following back surgery. I wonder if it would help students at their school desks - I do remember how painful it was to sit all day in school, as well as college. Will let you know how it works for me.

                      Certainly scoliosis can be seen as a "balance" problem that evolves into spinal deformity: http://www.scoliosisjournal.com/content/1/1/3
                      Last edited by mamamax; 11-29-2009, 05:43 PM.

                      Comment


                      • balance idea...

                        Mamamax

                        Ya know, you might have a point. The balance idea might mean something.

                        Maybe OPN damages the part of the brain responsible for balance and THEN the spine starts to curve in response.

                        FixScoliosis posted this a few weeks ago.
                        Vestibular asymmetry as the cause of idiopathic scoliosis: a possible answer from Xenopus.

                        A permanently imbalanced activity in descending locomotor/posture control pathways might be the common origin for the observed structural and behavioral deficits in humans as in the different animal models of scoliosis.
                        Long story short scientists screwed up the balance system in frogs and their muscles developed assymmetrically and their bodies grew deformed.

                        Comment


                        • About core muscles-my experience

                          Before my revision (fused,non instrumented-spine curving) I had very strong core muscles because I practiced Pilates faithfully with a personal certified Pilates instructor for ~ 3 years. We did everything possible to do this.

                          Despite this my spine continued to curve and I continued to lose breathing capacity despite, Pilates and regular aerobic exercise-strenuous walking/hiking.

                          It did help symptoms- but my spine continued to curve relentlessly.

                          Remember:
                          Scoliosis is not new.
                          There were only conservative methods--for centuries- before surgery was even considered. Surgery was explored because those methods did not work.


                          A search of the Internet of the history of scoliosis treatment going back millennia would be enlightening. A sample:
                          Traction, suspending, stretching, corsets, casts and exercises.
                          Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                          Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                          Comment


                          • I think historical evaluations like these are a little tricky. You end up conflating the methods and the time. If you look far back at the history of scoliosis surgery, I imagine you'd find a long string of non-successes before they hit on a reliable method.

                            Surgical AND non-surgical methods advance. That there wasn't a solution yesterday does not in any way indicate that they're won't be a solution tomorrow.

                            I read an intesting essay by Lewis Thomas about the state of medical knowledge in different areas. When medicine really "has it," the solution is simple, easy, and actually resolves the problem (e.g., anitbiotics). When medicine is floundering, the solution is complicated, risky, and offers some help but doesn't actually address the core problem. Scoliosis medical treatment is still in the latter category.

                            If we had the equivalent of an antibiotic for scoliosis, there wouldn't even be a discussions about alternative methods. But, until medicine actually gets a handle on the cause, course, and treatment, we're not going to know what the *true* solution is. Nor are we going to know to know whether that solution will come from medicine or alternative paths.

                            Comment


                            • core training

                              Karen Ocker

                              I think hdugger is correct.

                              Here is something interesting from McIntire's 2007 study on strength asymmetry.

                              Multiple factors might be responsible for the measured trunk strength asymmetry in female adolescents with scoliosis. Past studies have reported differences in cross sectional area, fiber type, and activation level between normal and AIS paraspinal muscles [4-6,9,44-50]. All these factors may influence force generation capacity of the muscle [20,51-54]. Multiple muscle groups are involved in rotating the trunk. Among the most important muscle groups for trunk rotation are the oblique abdominal muscles [25,43,48]. It is possible that the measured strength asymmetry is a result of altered biomechanics of the oblique abdominal muscles due to the asymmetrical torso. Mooney et al. [14] suggested that the trunk strength weakness was due to the muscle inhibition of the paraspinal muscles based on their EMG data of the lumbar paraspinal muscles. Trunk paraspinal musculature has been estimated to contribute about 5% of the total torque involved in trunk rotation [53]. The asymmetrical differences in trunk strength found in the current study, ranging from 2 Nm to 5 Nm (absolute torque in Table 3), might be partially due to paraspinal muscle weakness given their suggested 5% contribution.
                              In theory the paraspinal muscles are the problem. If I understand this study correctly it suggests that because of their tiny contribution it might be really hard to work them. The MedX machine locks down the pelvis which focuses more of the workload on the paraspinal muscles. Without the lockdown the abs take over because they are designed to do most of the work anyway. Core training may be slightly beneficial because it builds muscle but obviously it's not enough or scientists would know by now. It may have taken this advance in technology to get to the heart of the problem.

                              BTW I had a scientist look at the video of my son doing his torso rotations. He said that we had to lock down his pelvis or we would lose the benefit. I had to change the exercise to solve that problem. This is the kind of thing that nobody would have thought of even 10 years ago.
                              Last edited by Dingo; 11-30-2009, 11:25 AM.

                              Comment


                              • Doing the same thing and expecting different results.

                                What I have a problem with is doing the same thing, that was tried in the past, and expecting different results. This is where desperate hope ignores science. In the Internet age this can be packaged in ways to make it look like a revolutionary new treatment.

                                I am also enraged by claims of practitioners, with economic incentives, to engender hope in the desperate scoliosis sufferer. It happened in my case in the 1950's.

                                Below are some links to what was tried in the past. Pretty aggressive.

                                http://www.uihealthcare.com/depts/me...lanations.html

                                http://www.uihealthcare.com/depts/me...treat1920.html


                                http://www.uihealthcare.com/depts/me...ry/debate.html


                                What I want to see is permanent correction/halting of progression by alternatives. So far I have not seen it. So many persons on this forum wore braces faithfully for 6 or more years as teens-only to have those curves progress into surgical ranges in adulthood. The ones which did not progress(small ones) might have the newly discovered gene for the non-progressive type.
                                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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