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  • #46
    Originally posted by mariaf View Post
    A prolonged illness, or even something like a broken leg, or any number of things could make exercise impossible for weeks/months - what would that do, as you say, to everything gained over the years? Certainly, nobody can say for sure but it's a risk, we just don't know how much of a risk.
    I might get run over by a bus tomorrow, so what's the point of doing anything today. What a bummer. Tamzin might get a cold, be laid up for a few weeks with something, so I'll just get her fused. Your concerns are naive at best. (More absurd than that actually--e.g., BED REST used to be used as a treatment! So much for the risk then.)

    Posted by Hdugger

    * The effort to discover the exercises which actually work is ongoing. Some simple things (torso rotation, side-shifting) seem to work pretty reliably, but a complete exercise regime is either not known by anyone, or not clearly disseminated.
    * Some curves simply are not going to change with exercise, particularly curves where some of the bones are already fused.
    * The maintenance, although not onerous, is required in order to hold the reduction.
    Those points are excellent.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

    Comment


    • #47
      The effort required to maintain a curve reduction is slight, according to most studies. Both SEAS and the torso rotation folk put it at about 15 minutes several times a week.
      SEAS can't just KNOW it. They have to SHOW it. Where have they SHOWN it? If you think they have then can you post the papers?

      As regards TRS, there are only 35 patients in two studies in the entire world and only some of whom were in the growth spurt. You can't claim a minimum maintenance can be known from that database despite the fact that McIntire's study was exemplary in many regards and was noted as being one of the few studies that were considered objective as I recall. The rest, SEAS, Schroth, etc. were viewed as non-objective and aiming to promote their system. When you look at these studies, you should consider that point and not just repeat their claims robotically.

      The effort required to reduce a curve is greater, but for a short period of time (like a month or so for several hours a day), this time according to the SEAS folk.
      For one patient out of how many? Why didn't the other patients respond also?

      Again, the problem with exercise is *NOT* that it requires too great an effort. If it works, and if you're actually doing the correct exercise, it's a minimal investment. Far less than that required for just general overall health.
      You have an "if" in there. So you aren't actually claiming results in reality.
      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


      • #48
        Originally posted by TAMZTOM View Post
        I might get run over by a bus tomorrow, so what's the point of doing anything today. What a bummer. Tamzin might get a cold, be laid up for a few weeks with something, so I'll just get her fused. Your concerns are naive at best. (More absurd than that actually--e.g., BED REST used to be used as a treatment! So much for the risk then.)
        Well that was my point initially. And you have a good point. But I think it might tend to undermine determination in some folks to stick with a PT program if they thought all their work could be undone in a short period of inactivity.

        When my kids got their braces off after wearing them for years (they weren't exactly compliant with the rubber bands and so it took much longer), there were given a retainer. They were told the teeth would go back to their original position pre-brace in about a week if they didn't wear it. That's years of wearing braces being undone in a week. They will (hopefully) wear the retainer the rest of their life (at night).

        Now I don't think PT is quite that bad. This came up earlier and I thought my horse starts to lose noticeable condition in about 10-14 days of rest. We had a PT woman agree that for some muscles, that's the right time frame. I think she said others muscles have a different time frame.
        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


        • #49
          Originally posted by Pooka1 View Post
          Careful here... my kids have at least 4 hours of homework most nights. :-)
          I like it! My 14 yr old is complaining about 2 hours per night!
          07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
          11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
          05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
          12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
          05/13: (12yrs) <25, >22cms height, puberty a year ago

          Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

          Comment


          • #50
            SEAS case study

            http://www.biomedcentral.com/content...-7161-3-20.pdf

            B.I. started performing SEAS exercises 30 minutes every day at home, and came to the Center every two months to check and intensify her exercises. In one year B.I. recovered her posture, and according to radiographs, she was even better than at the end of bracing treatment (March 2007, RT 32°, LL 28.5° – Figure 6).
            So she exercised 30 minutes every day and then had her PT "intensified." What does that mean? Harder exercise or longer workouts? Who is piloting that peer review ship?

            It is unclear how much of the year she required to get to the 28*. All they say is the year time frame. If she did it in month or so as has been claimed upthread, I suggest the authors would have put that in the TITLE of the paper, not buried in the methods.

            SEAS is very good in having blinded radiograph readers. I believe their numbers unlike, say, the numbers coming out of a certain operation in eastern Canada...
            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


            • #51
              Originally posted by Pooka1 View Post
              But I think it might tend to undermine determination in some folks to stick with a PT program if they thought all their work could be undone in a short period of inactivity.
              Unfortunately, that's the deal with many things in life that don't have instant results. 6 weeks out can wreck a runner's entire competitive season, but they do not lose everything. Nor do they give up running because of LIKELY injury. ALL THEIR work will not be undone. E.g., a kid reduces from 40 degrees to 25 degrees, then busts an arm. That kid is still breathing; breathing uses muscles; the scoliotic breathing pattern can be countered while the kid recovers. Isometric tension during activities of daily living, i.e., working the stabilising muscles, can be performed even with a bust bone or two. ... The point is that things can be done.

              That's years of wearing braces being undone in a week. They will (hopefully) wear the retainer the rest of their life (at night).
              Now that analogy should open a few minds. Just as your kids adapt, wear their retainers, others adapt, see maintenance exercise as just a part of life.

              Now I don't think PT is quite that bad. This came up earlier and I thought my horse starts to lose noticeable condition in about 10-14 days of rest. We had a PT woman agree that for some muscles, that's the right time frame. I think she said others muscles have a different time frame.
              I treat my older daughter like a horse. :-) Even after her one day a week off, she is visibly more sluggish. Her HR is typically up by 3 - 5 bpm at the same speed and distance as before the day off. To let the body adapt to the training, the day off is required--we don't get fit during training, we get fit when resting after training. Two weeks off like your horse knocks her for six. She takes 3 weeks off after the summer track season ends. It typically takes her the same time to fully recoup her previous fitness (rule of thumb = weeks off = # of weeks to recover fitness).
              07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
              11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
              05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
              12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
              05/13: (12yrs) <25, >22cms height, puberty a year ago

              Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

              Comment


              • #52
                Originally posted by Pooka1 View Post
                So she exercised 30 minutes every day and then had her PT "intensified." What does that mean? Harder exercise or longer workouts?
                The paper describes the weakness in major muscle groups; with increases in strength, "intensification" here would entail increased reps to improve endurance (Type 1 fibers) and possibly increased weight or resistance to increase strength sufficiently to stabilise the body, which had posturally collapsed.

                The salient point is that the patient corrected....as an adult...and avoided surgery.

                SEAS is very good in having blinded radiograph readers. I believe their numbers unlike, say, the numbers coming out of a certain operation in eastern Canada...
                What numbers are these? SpineCor stuff? Do you have links?
                07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                05/13: (12yrs) <25, >22cms height, puberty a year ago

                Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                Comment


                • #53
                  Originally posted by hdugger
                  I never understood the "but what if I lose it all" question. I think it goes back to the mistaken notion that achieving/maintaining the reduction is onerous
                  I've talked to people who attended the SOSORT 2012 conference in Milan. There was much discussion of how "less is better", i.e., exercise isn't time consuming. The publication will make interesting reading.
                  07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                  11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                  05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                  12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                  05/13: (12yrs) <25, >22cms height, puberty a year ago

                  Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                  Comment


                  • #54
                    Originally posted by hdugger
                    No one but no one wants to go through surgery again, but a very large percentage do.
                    Citation? This sounds obviously false as are many of your other statements.
                    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


                    • #55
                      Originally posted by TAMZTOM View Post
                      The paper describes the weakness in major muscle groups; with increases in strength, "intensification" here would entail increased reps to improve endurance (Type 1 fibers) and possibly increased weight or resistance to increase strength sufficiently to stabilise the body, which had posturally collapsed.

                      The salient point is that the patient corrected....as an adult...and avoided surgery.
                      We were discussing amount of exercise. They don't specify how much she had to do every day for most of a year to achieve the reduction. It could have been ramped up to 2, 3, or more hours a day and only then did she start to reduce the curve. Hawes did even more than that every day for several years. If it takes more time than people have then it isn't going to help folks.

                      What numbers are these? SpineCor stuff? Do you have links?
                      Yes. We have surgeons claiming the Montreal publications are widely disregarded and we have at least two cases on the group where they were obviously wrong, one checked over by another surgeon. There is a reason why most surgeons in the US will use other braces but not Spinecor. It is no coincidence.
                      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


                      • #56
                        Originally posted by Pooka1 View Post
                        We were discussing amount of exercise. They don't specify how much she had to do every day for most of a year to achieve the reduction. It could have been ramped up to 2, 3, or more hours a day and only then did she start to reduce the curve. Hawes did even more than that every day for several years. If it takes more time than people have then it isn't going to help folks.
                        You asked what could "intensity" mean. It could not have been ramped up 2,3 or more hours a day--the subject was not capable of doing that, trained athletes would have difficulty. This is obvious. Hawes did a lot of stuff for her respiratory ailments and then discovered how to reduce her curve. Hyping up exercise in the above fashion will dissuade some parents with kids who could avoid surgery not to even try. A degree of responsibility is required in these posts.

                        Yes. We have surgeons claiming the Montreal publications are widely disregarded and we have at least two cases on the group where they were obviously wrong, one checked over by another surgeon. There is a reason why most surgeons in the US will use other braces but not Spinecor. It is no coincidence.
                        No one really cares if some random surgeon dudes claim this or that. To paraphrase Hawes, "Who cares what...[random dudes]...claim if they have no evidence to back it up." Sharon, are you citing anecdotal evidence from NSF posters? (Bit of tongue in cheek.) The US surgeons are behind even the UK surgeons in their knowledge of non-invasive methods, so that puts them somewhere in the 18th century.
                        I am aware of four cases of NSF posters for whom the SpineCor didn't work: three of those didn't comply with the protocol (braces not worn, repeated intensive ballet days--6 hours--out of brace, no consistent exercise); in Tamzin's case, the brace compressed her spine, loaded the curves, basically sucked big time. I'm also aware, from NSF, of several cases where kids wearing SpineCor did not progress or significantly improved. This proves nothing either way. I thought you were referring to recent SpineCor study results--they have another 10 year study coming out NOW.
                        07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                        11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                        05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                        12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                        05/13: (12yrs) <25, >22cms height, puberty a year ago

                        Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                        Comment


                        • #57
                          Originally posted by TAMZTOM View Post
                          they have another 10 year study coming out NOW.
                          I'm sooo tired of these 'studies', I live 40kms from ISICO HQ and despite all their studies they can't do anything for me. If you know some Italian and go through their blog you'll read stuff like "what we know is still a fraction of what we don't know", what does that tell me? If I want to do something for my back I have to look myself what's good for me, there might exercises out there which might be helpful who knows.. in their blog I've read of a patient around my age using Gyrotonic, there's only a mini-trial about it so if anyone has used it or knows anyone who has pls PM.

                          Comment


                          • #58
                            Originally posted by hdugger
                            The time required in initial exercises by Hawes and Miller is likely to be 99% research and 1% exercising. They're trying things out, trying to figure out what works.
                            This is our experience exactly. And unlike Hawes, I had to learn a few languages to even understand the stuff.

                            It's not rocket science, folks. These people are doing research and communicating their results, there's no reason to guess.
                            It would be hugely beneficial for newcomers, perhaps with kids just diagnosed and wanting to try the exercise way, to be directed towards stuff like Hawes, Mehta and Seas.

                            SEAS:
                            There are just a few days onsite, and the rest of the program is completed at home, 30 minutes for three days a week.
                            ADLs and ASCs in addition, but that's just a matter of, put simplistically, having better and corrective posture.

                            Again, the problem with exercise is not that it's too hard. It's that the correct exercises are not widely known, some curves don't reduce, and the exercise has to be continued.
                            To the point.
                            07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                            11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                            05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                            12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                            05/13: (12yrs) <25, >22cms height, puberty a year ago

                            Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                            Comment


                            • #59
                              Originally posted by TAMZTOM View Post
                              You asked what could "intensity" mean. It could not have been ramped up 2,3 or more hours a day--the subject was not capable of doing that, trained athletes would have difficulty. This is obvious.
                              Tom! I don't know what "intensity" means and neither will most other patients and parents reading this! Because these authors CHOSE to be cryptic and because the peer reviewers let them get by with it, THEY are responsible if people starting making wild guessing about what "intensity" mean, yes?
                              Last edited by Pooka1; 07-10-2012, 12:49 PM.
                              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


                              • #60
                                Originally posted by Alistair View Post
                                If you know some Italian and go through their blog you'll read stuff like "what we know is still a fraction of what we don't know", what does that tell me?
                                Well that tells me they are pretty good and honest researchers. That, plus the blind radiograph reading puts them out ahead of other groups unless the other groups do the same. They really seem to care about trying to get a real answer in my opinion.

                                The other thing is they apparently have determined that the one case report cannot be replicated (for whatever reason). That would have constituted knowing something about PT and how it reduces adult curves if they could apply it widely. So maybe there is something unique about that one patient.
                                Last edited by Pooka1; 07-10-2012, 12:50 PM.
                                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

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