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Treatment: PT using MedX per Mooney & later, McIntire research

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  • Originally posted by AMom View Post
    Today was her 6 month evaluation; we always start with a modified biering-sorensen test (roman chair set to 90°.) Immediately thereafter, she did 20 reps @ 45° with Schroth arms on the roman chair and then went through the rest of the exam. She is more comfortable in the asymmetric position and able to handle a bigger workout. This is only her third time, but all three of us agree (daughter, PT, & me) this position is better suited to her needs.
    I can only speak from my personal experience here. Suffering from pain for so long and doing many different exercises to help strengthen the spine has given me a little insight. IF the Roman Chair exercises end up having no effect on your daughters scoliosis progression, I think you are still doing her a great favor by having her do these exercises. I have found that of all the exercises that I have done, the Roman Chair exercises have given me the greatest pain relief. So you may well be keeping her out of pain and hopefully keeping her curve stable by your exercise routine. It's a win, either way. If she ends up needing surgery, she will be in excellent shape going in and you could be saving her a great amount of pain in the interim.

    You are a very dedicated mom and it's great to see parent's like you. I only wish I had the knowledge to keep a better eye on my daughter's scoliosis, because it's out of my hands now. It wasn't until coming to this forum that I have realized how much more proactive I could have been. I just took the doctor's word for everything. She was referred to a general ortho and NOT a scoliosis specialist. He recommended doing NOTHING and she was only 12. I have no idea how bad it is now, but I can see it when I look at her back and she has back pain. Her curve appears to be very similar to mine with the exception that her primary curve seems to be a lower right thoracic and the compensatory curve seems to be the upper left thoracic as it appears much smaller. Her shoulders also appear even and the last time she let me look, she had no significant rotation that I could detect on the Adam's Forward Bending test.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • Originally posted by rohrer01 View Post
      I may be jumping in here where I don't belong...
      I agree with everything Rohrer has reasoned and written. Great post. MRI should be given to all kids with scoliosis to check for ectopic CTs. (I've written most of what you discuss, Rohrer, on Tamzin's thread. Unfortunately, no reasoned response forthcoming until your post above.) 2mm....4mm...8mm...only the last is above the 5 - 6 mm cut-off point, but, as you say, a 2mm or 4mm may also affect many things.

      Very interested in AMom's results: CTR focuses (I believed) on the lumbar paraspinals; AMom's results show slight increase on the LC, correction on the TC; both are within the margin of error, so could reflect, e.g., different standing position by her daughter...or an inebriated medic measuring the curves. Stability HAS been maintained. Excellent. In our forays into CTR, we've discovered (in THREE people) doing HB CTR and another person using a CTR machine that the already overworked and overstretched lower left lumbar musculature works during CTR. I believe this is inevitable; the advancement would be to get both sides working evenly. I've seen lumbar and thoracic curves move detrimentally during rotation INTO existing rotation. I've also seen Emily's daughter's lumbar muscles work EVENLY during asymmetric, left turning TR.

      Much to investigate.
      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


      • Bravo!

        WELL DONE AMOM!!!

        When you get a chance I'd love to see how much your daughter grew over the past 14 months.

        Her results are in line with all 3 torso rotation studies plus the anecdotal evidence I've read. It's very telling that despite your best effort her curve progressed steadily until you began torso rotation therapy. The MedX only takes a few minutes per week so whatever it's doing is quite powerful.

        Scott is about 6 months away from his next checkup and I'll post his results. We continue to do torso rotation on the CYBEX 3x per week.

        GOOD JOB!!!

        Comment


        • THE RETURN OF THE DINGO...(cheering heard)...

          Originally posted by Dingo View Post
          WELL DONE AMOM!!!
          Hate to appear dafter than I am Dingo, but what THREE studies? I've read Mooney and McI; what's the other one?

          Cheers
          Tom
          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


          • Excellent job AMom. So glad to hear this news.

            Comment


            • Originally posted by TAMZTOM View Post
              Hate to appear dafter than I am Dingo, but what THREE studies? I've read Mooney and McI; what's the other one?

              Cheers
              Tom
              Dingo,
              Do you mean the two Mooney and one McIntire articles? There are a couple of versions of the Mooney study because he also presented the results meetings....
              A Mom

              Comment


              • Originally posted by AMom View Post
                Dingo,
                Do you mean the two Mooney and one McIntire articles? There are a couple of versions of the Mooney study because he also presented the results meetings....
                A Mom
                Mooney re-published the ENTIRE DATA SET of one paper (12 cases) in another paper (those 12 cases plus 8 new ones).

                That is ONE unique dataset (in the second paper), not two independent studies.

                It is interesting to ask why a person who certainly does not need to pad their resume republished an enitre dataset of an earlier paper (without mentioning it). Also interesting is why not a follow-up on the original 12 cases (3 years later) as opposed to re-publishing the original (very old data) data plus 8 new cases. Most interesting of all is how it got by peer review.
                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


                • Originally posted by AMom View Post
                  I'd be interested in speaking with the PT in Kansas, would you mind asking if it would be okay for me to contact her/him?
                  If I had a name I'd definitely send it to you . Unfortunately, it was a quick question at the end of a very long night right before I defended and moved from KC out to SF. His comment/question has just always stuck with me as a definite possibility and/or a very good suggestion. I think you all are potentially finding this out in real life.

                  Originally posted by TAMZTOM View Post
                  Regular performance of particular corrective exercises help correct ribs and spine. Your endeavour to identify and isolate effective exercise is necessary and commendable.
                  And then we have the rest of life. Identifying efficacious methods or exercises is important but problematic given disparate postural, proprioceptive, nutritional, motivational, focused lives of the ‘patients’. Tamzin cannot be categorised as a SpineCor wearing Schroth patient. Schroth is grounded on proprioception improvements. ISICO, SEAS, several SOSORT conferences, a century of European corrective methods all emphasise the crucial importance of what patients do when they are NOT exercising. I and many others consider erasing the scoliotic subconscious with active self-correction throughout every day necessary to achieve lasting correction. To optimise, the patient should be healthy, fit, focused and determined to correct. General entire body aerobic conditioning and muscular strength are crucial. Then, particular exercise (e.g., Schroth, TR) can be added to achieve maximum results. Within Schroth exercising, there are 100s of exercises; we have a core of around 10 that we observe have the best effect.
                  Schroth rotational angular breathing (RAB) is designed to derotate the spine. Tamzin’s spine (before wearing a brace) derotated by approx. 6 – 7 degrees (thoracic). Tamzin uses RAB all day, every day. Schroth exercises build muscle and muscle endurance AFTER the patient has used RAB to align the body. Your question—“Or, do you think it just looks like this DURING the workout?”—I think entirely misses the point of physiotherapeutic exercise to correct scoliosis.

                  However convenient and simple it would be to isolate the ONE THING THAT WORKS, a better way to approach treatment would be to determine what type of daily life is the most likely to succeed, then fill that day accordingly. 3sister and her daughter are the same, i.e., cannot be categorised simply as Schroth patients w/ or w/o brace.
                  Originally posted by Pooka1 View Post
                  This is an astute point that I haven't seen made before to my recollection... it may be there is no ONE thing in conservative treatment that works. It may be conservative treatment can work for many patients but several modalities are simultaneously required.
                  All of the above. Great stuff. This thread in general, is great stuff. As well as several others around here. I'm reminded by something my current mentor talks about all the time in regards to our current work (leucine/branched-chain amino acid supplementation and muscle atrophy/hypertrophy). He mentions that the weight training websites, magazines and forums have been discussing whey protein combined with weight lifting for decades yet it's just been within the last decade that science is finally catching on. Of course it's not so much that we're 'catching on' as we're able to now describe HOW whey protein, i.e. leucine, does this. But the main, albeit somewhat comedically delivered, point is that the public will do their own little science experiments on themselves and then scientists can kind of learn from those successes or failures.

                  Originally posted by AMom View Post

                  31T & 25L on 04-16-12

                  ...

                  DAUGHTER'S PLAN: Continue to bring ipad Touch & listen to favorite books on tape so as to drown out my Mom's boring conversation with the Ortho
                  Excellent news and plans on all points!! Great job Daughter and great job Mom!!

                  Comment


                  • Originally posted by rohrer01 View Post
                    I may be jumping in here where I don't belong.
                    No actually you are someone with some relevant background who I certainly think is worth reading.

                    But I have been saying what Tom is saying about AIS and JIS all along. The difference in bracing success may be as simple as when the diagnosis is made. It seems logical that the more growth is left, the more success you will have with a brace. If, for example, I had been diagnosed at 8 years old when I started having pain (meaning pathology had to have been going on BEFORE age 8), bracing may have been successful, IF they could invent a brace that would even touch a curve like that. BUT, since I was not diagnosed until age 16 when I had nearly reached skeletal maturity, there was no room left for correction. I believe that correction from a brace strictly comes from straightening a spine while it grows. Otherwise, what have you to work with?
                    I think the claim is that there is enough growth left in low Risser AIS cases. If not then they wouldn't brace at all. But maybe you are saying the amount of growth left in AIS might be enough to halt a curve in brace but the more growth remaining in JIS is enough to reverse the curve? I have never seen that suggested. Maybe it is right. JIS appears different also because of the equal proportion of girls and boys as opposed to AIS which is ~7:1::Girls:Boys.

                    Bracing an already mature curve seems, in my opinion, to be more harmful than helpful because of muscle atrophy unless you have a dynamic brace that allows the muscles to continue working.
                    Mature curves are not braced to my knowledge (except the adults who brace for pain relief only).

                    (snip)

                    How many people (JIS, AIS) with scoliosis have low lying tonsils as compared to the general population?
                    That's a good question. For AIS, Tom found a figure of 35%.

                    Of course, someone has to draw that line in the sand as to what criteria is needed to diagnose a true Chiari 1 malformation. But after observing what the medical community considers to be a "normal" brain within the skull, all of the information I have seen shows NO low lying tonsils. So, even if there isn't a true herniation, as in the case of Tamzin, is there enough correlation to show a relationship between low lying tonsils and scoliosis? I don't think they even look at that in most cases. In my opinion, I think that relationship should be invesigated.
                    I agree.
                    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


                    • Originally posted by Kevin_Mc View Post
                      [...] to our current work (leucine/branched-chain amino acid supplementation and muscle atrophy/hypertrophy).
                      Why focus on LEU and not ILE and VAL?
                      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


                      • Originally posted by Pooka1 View Post

                        I think the claim is that there is enough growth left in low Risser AIS cases. If not then they wouldn't brace at all. But maybe you are saying the amount of growth left in AIS might be enough to halt a curve in brace but the more growth remaining in JIS is enough to reverse the curve? I have never seen that suggested. Maybe it is right. JIS appears different also because of the equal proportion of girls and boys as opposed to AIS which is ~7:1::Girls:Boys.
                        Like I said, my son had a complete reversal of his JIS with NO TREATMENT or exercises of any kind, my daughter did not from hers (JIS/AIS???). It may be something in the inheritance patterns as to WHY girls don't self-correct like boys tend to do. I'm also saying that progressive JIS should be braced, as there is a LOT of growth left and as it seems some correction is possible, not just a holding pattern. AIS cases, if you can call them that, just don't have enough fast paced growth left (usually), even with low risser. Just think of how much a child grows from the time they are one to 12 vs. 12 to 18. I would expect that a brace would be more successful in boys with AIS and low risser simply because they tend to grow more in the adolescent years than girls do. But that is just my conjecture.

                        I do believe that all braced kids need time out of brace to exercise. This TRS training seems to be panning out to be something definitely worth pursuing. AND like I mentioned before, the Roman Chair was excellent at reducing pain, although I don't know what effect it has on the hypokyphosis that invariably comes along with T-curves. But whichever activities are done, a braced kid should be exercised, period. I've seen what happens when an arm comes out of a cast. It's aweful!

                        But again, they need a scoliscore for JIS since many AIS are probably undiagnoses JIS, anyway. This way exercised and/or braced JIS kids with a high score can at least expect shorter or less complicated fusions due to bracing and exercising. But, the claim is, thus far, that the scoliscore is only for AIS. I think that is totally bogus, since there is NO WAY to distinguish between the two unless one is diagnosed very young. The key is diagnosis. They are already using scoliscore on JIS cases that were undiagnosed. So either the test is flawed, or it works on both JIS and AIS, period.



                        Originally posted by Pooka1 View Post

                        Mature curves are not braced to my knowledge (except the adults who brace for pain relief only).
                        I tried a support undergarment that was designed to hold in the pooch that sticks out from around the bra strap line, as it was designed with a LOT of back support. My hopes were to relieve some of the muscle tension on my upper back. Oh, my! I couldn't get that thing OFF fast enough with the amount of pain it caused! If braces cause that much pain in kids, I would definitely want to try the TRS route vs. bracing, at least initially to see if the curve holds such as in Amom's daughter's case.


                        Originally posted by Pooka1 View Post

                        That's a good question. For AIS, Tom found a figure of 35%.
                        But what is the general population? 35% means nothing without a control sample. I'd be interested in reading that paper. Also, we DON'T know about the low lying cerebellar tonsils. Is it just an anatomical difference, such as a big nose vs. a small nose, or is there some significance there?

                        My apologies to Amom and Dr. McIntire if my line of questioning is off topic.
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • Originally posted by rohrer01 View Post
                          But what is the general population? 35% means nothing without a control sample.
                          Yes I knew what your were asking. :-)

                          My apologies to Amom and Dr. McIntire if my line of questioning is off topic.
                          Maybe start another thread. I have started a few in response to issues in this thread.
                          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


                          • Originally posted by Pooka1 View Post
                            Why focus on LEU and not ILE and VAL?
                            Already been done. ILE and VAL have no effect on muscle protein synthesis or signalling. Although, there's good evidence to show that a physiologic balance of the three does better than just a bunch of LEU. Go figure, more of a good thing isn't necessarily better. Lots of recent stuff on LEU/BCAA and muscle protein synthesis.

                            Comment


                            • Well, these issues are somewhat related as I express the need for these exercises in my "opinions". I'll just leave it at that. If someone else wants to comment on the other issues that were woven in here, they can comment on the many other threads already covering those topics. I hate to start another one.

                              My primary concern really is how the muscles work in connection with these exercises in conjunction with (or not) other conservative treatments and the risk/benefits of doing them with other criteria, such as nervous system disorders and propensity to progress (scoliscore) and age. I, as an adult, am still looking for things to help stop progression and am starting "new conservative therapies" myself, as that is all that is left in MY toolbox.

                              I am amazed at Amom's daughter's stability through all of this, as there seems to be a risk of aggravating a curve and making it worse. She's totally on the ball in watching how her daughter exercises and making adjustments as needed. Tom's daughter amazes me as well, but he also incorporates many of these other modalities, which is how I am leaning a little off topic as to straight muscle physiology and mechanics.
                              Be happy!
                              We don't know what tomorrow brings,
                              but we are alive today!

                              Comment


                              • Originally posted by Kevin_Mc View Post
                                Already been done. ILE and VAL have no effect on muscle protein synthesis or signalling. Although, there's good evidence to show that a physiologic balance of the three does better than just a bunch of LEU. Go figure, more of a good thing isn't necessarily better. Lots of recent stuff on LEU/BCAA and muscle protein synthesis.
                                Ah very interesting!

                                I assume LYS is low in diets because I remember reading about trying to grow high-LYS corn years ago. But I guess LYS is not important for synthesis or signalling?
                                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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