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Thread: New to the game

  1. #1
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    New to the game

    All- I have been reading with interest all the great posts out there from some wonderful parents who are well in along in the fight that I am just starting with my son. Eric is 13 with 13 degree thoracic and 13 degree compensating lumbar curve. He is 5'5" and just hitting puberty Risser 0. I know that gender is on my side here, but of course got what I expected in our first consult with the ortho doc (Emory Spine doc)...wait and see...7 mos come back for another xray. Then KEEP watching IF or when it progresses. I want to start some type of PT for the assymetry in core muscles (read the '03 article in Orthopaedics) and I will most likely start some melatonin (thanks Dingo). Eric was also a night light kid. The doc reluctantly gave me a script for PT. Luckily my husband is a personal trainer, so if we can "learn" some of the right things to do it may not be too onerous for Eric to do them. Right now he just wants to ignore the whole thing. He is a very active and talented baseball and football player and is "stunned" about the betrayal he feels his body has dealt him. Any advise would be greatly appreciated.

  2. #2
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    Dingo also recommends the torso rotation with a torso rotation machine. I don't have the link handy, but if you google "scoliosis torso rotation" you should find it.

    If I'd found out about my son's scoliosis when he was a bit younger (he was almost 17 by the time is was diagnosed) I would have looked into exercises/PT instead of just watching and waiting. The people associated with the SEAS exercises in Italy have seen very good results in young people, and they have a good comprehensive sense about when to do exercise, when to do bracing, and when to go to surgery.

    The general recommendations I hear are keeping the core muscles strong, stretching the convex side, and strengthening the concave side (or, I think that's right). The side that has the spine curving into it is too tight, and the side that has the spine curving away from it is overstretched and weak.

    Our PT person strongly recommends swimming, because it does crosswise exercise - you move the arm and the leg on the other side at the same time. He also recommends non-throwing martial arts, like some forms of kung fu and all of tai chi.

    We also felt that deep, theraputic massage was very helpful. We went to someone who has special training in working with injuries and she was able to put my son's neck and shoulder blades in a better position.

  3. #3
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    Quote Originally Posted by hdugger View Post
    Dingo also recommends
    It is important to note Dingo is a concerned but lay parent with no training in medicine or clinical study design or anything relevant to this subject.

    He recommends it based on his lay reading of the literature and not on any recommendation from an experienced pediatric scoliosis surgeon.

    PT might work but it hasn't yet been shown in controlled studies.

    When you say someone recommends something and that someone has no formal training, it is misleading. You have to qualify these comments because the person may assume these recommendations are based on something scientific.
    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."

  4. #4
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    Hi there:

    Since you mentioned doing a PT approach, and I since I am a PT who also has scoliosis....I'd like to recommend that you do the most specific PT approach to manage scoliosis, which is the Schroth approach. A PT who is not trained in scoliosis care, or is not naturally extremely imaginative, would be unlikely to be able to provide effective PT for spinal deformity.

    You can check out photos on a thread posted by MissEmmyF for examples of how the exercises might look. There is plenty of research out there to support the benefits of a scoliosis-specific exercise approach - of course, there is no cure for scoliosis - the goal is to minimize the postural collape and altered postural self-awareness that comes with the bony deformity, as well as to manage pain).

    I recently travelled 6 hours away for a week of holidays and three days of therapy, and am so glad I went (the 7 hours of PT cost about $450, which my health benefits cover, and the rest was my summer vacation) Feel free to PM me for info; I plan to post about my Schroth experience soon, but at present, time is a bit tight...


    Cheers, B.
    Last edited by betty14; 09-05-2009 at 03:49 PM.
    Bettina:
    - 34 year old physiotherapist
    - main curve of 3 is mid-thoracic convex, approx 37 d.
    - my goal: to stay as upright, strong and painfree as I can, as long as I can.

  5. #5
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    Quote Originally Posted by betty14 View Post
    There is plenty of research out there to support the benefits of a scoliosis-specific exercise approach - of course, there is no cure for scoliosis - the goal is to minimize the postural collapse and altered postural self-awareness that comes with the bony deformity, as well as to manage pain).
    Yes there are benefits like pain relief from PT for scoliosis patients but the OP seems to be asking (correct me if I'm wrong) about PT as it relates to slowing, permanently stopping or perhaps permanently reversing curves in Risser = O, 13 y.o. spine.

    What benefits of PT have been demonstrated in that case?

    Hopefully, PT can be shown to be efficacious in halting curve progression in kids and especially in avoiding bracing but people who "know" that need to show it in controlled studies I would think.
    Last edited by Pooka1; 09-05-2009 at 04:20 PM. Reason: added key words and quotes for clarity
    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."

  6. #6
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    Update to New to the game

    Thanks to all for replies so far. I am going into this with a healthy sense of inquiry and I hope the appropriate amount of urgency. I have spent 30 years working in healthcare in some form or fashion and the genuine quest for answers comes from those who appropriately question the status quo. I have purchased a book on the Schroth method and have been considering swimming lessons for Eric. I will be looking into alternate PT methods in our local area to see what is what.

  7. #7
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    I think that overstates the strength of science in the medical field. Almost none of the studies I see are what I would call "good science." They're mostly anecdotal (single surgeries) or restrospective with lots of uncontrolled factors and lots of different types of patients lumped together. That's not to say that they don't strongly suggest some things, like surgery helping to keep a large curve from progressing, but there are also enormous grey-to-black areas that science has cast little light on. The best course of action for a small curve in a young teen is right in the middle of one of those black areas.

    Given that we're all groping around in the dark here, lay people as well as doctors, we have to go forward with our best guesses. For a small curve, there really is no formal medical recommendation so there's no chance of leading someone astray from an established medical procedure. There are some studies that recommend bracing instead of observing, and some that recommend exercise instead of observing.

    If I were a parent with a youngish teen boy, I would pick exercise, and I wish the orthopedic surgeon we first saw had made the same recommendation. Barring that, I wish I'd had someone like Dingo pouring through the research and telling me what *might* help based on the available literature. It's is extremely unlikely that it would do any harm, and there's some evidence that it might do some good. At the moment, with the current state of medical science with this particular question, that's about as good as it gets.

    Quote Originally Posted by Pooka1 View Post
    When you say someone recommends something and that someone has no formal training, it is misleading. You have to qualify these comments because the person may assume these recommendations are based on something scientific.

  8. #8
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    Quote Originally Posted by hdugger View Post
    Barring that, I wish I'd had someone like Dingo pouring through the research and telling me what *might* help based on the available literature.
    Yes I understand that point but his "picks" from the literature as to what might help are riddled with such obvious design and interpretation problems that he missed that it isn't rational to think at this point they even might be beneficial. See the torso rotation thread for examples of this. It is clear the studies he likes do not have data to support their conclusions.

    You don't need a PhD to start to understand the literature. But you do need a sense of what is required to approach and understand the literature. And you need some humility as to how long it takes to get your arms around even a small sub-field in science or medicine. It took me a few years to get enough of a sense of the literature in my field to even propose a dissertation topic. Dingo doesn't realize or accept this fact of life. It is missing in Dingo's approach based on his comments on the literature, much of which can be expected to be false.

    And I know you know what I'm referring to as this is your game. Look at the torso rotation thread... it makes my case.

    I am not trying to beat up on Dingo (though he immaturely calls me names on a yahoo group). But his comments on various therapies are not supported by the literature he cites. It is okay to be hopeful but it is not okay to claim things in the literature that aren't there. He sometimes honestly reels himself and his claims in. But not most of the time. It is misleading.
    Last edited by Pooka1; 09-05-2009 at 06:53 PM. Reason: spelling
    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."

  9. #9
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    I'm not sure I have the right training to determine whether people are behaving irrationally

    Yes, the study has weakensses (as do many of the surgical studies), but it is a faint light in an area of darkness, and it does reinforce the other studies showing some benefits from exercise in young scoliosis patients with small curves. Since the medical field has nothing to offer these patients, it seems reasonable to follow these lights.

    Quote Originally Posted by Pooka1 View Post
    Yes I understand that point but his "picks" from the literature as to what might help are riddled with such obvious design and interpretation problems that he missed that it isn't rational to think at this point they even might be beneficial. See the torsion rotation thread for examples of this. It is clear the studies he likes do not have data to support their conclusions.

  10. #10
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    Well, as far as I know we have the folowing:

    1. many smaller curves will not progress no matter what you do and don't do.

    2. some smaller curves will regress and even completely resolve even doing nothing.

    3. some curves are stable for months at a time and then move and then are stable for months at a time.

    Given the above, if you run a study for some 4 or 8 months WITHOUT controls, how can you say anything about the efficacy of anything under study?

    My one kid had a curve that progressed, was stable, progressed, was stable then progresses all on times scales of at least 6 months (the radiograph recurrence interval if you will). Both in and out of brace BTW. Her case alone and all by itself blows the Mooney study and its conclusions completely out of the water. Had she been enrolled during one of her out of brace stable periods, she would have been counted as a "success." Yet back in reality, she didn't do one single exercise. How many fake successes were counted in the Mooney study? How would anyone know given the study design? How much more damning can you get of the Mooney study? Where are the peer reviewers? Asleep at the switch?

    If a study: 1) is of short duration and has no followup, 2) has no control group, and 3) makes no effort to see if the study group has different results than a "virtual" group with the same age, Risser, curve magnitude, etc. characteristics then they can't say a damn thing about the efficacy of the study treatment. Yes? No? Someone is out to lunch here. If it's me then I'd like to know where I'm jumping the tracks on this.

    Thanks.
    Last edited by Pooka1; 09-05-2009 at 06:33 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."

  11. #11
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    Quote Originally Posted by hdugger View Post
    but it is a faint light in an area of darkness,
    If most of even the bright lights in the darkness are false, what possible hope is there that a faint light might be correct?

    I mean it might be but what are the chances?

    Here's what we have w.r.t. Mooney as far as I know:

    1. published a few papers (of questionable conclusions IMO)(ETA: ON TORSO ROTATION. N.B. This is NOT a comment on the TOTAL number of papers he published. I thought that was clear from the context but I see not.)

    2. got at least one other surgeon to do a study on torso rotation

    3. that other surgeon is no longer studying torso rotation

    4. he is having to fund his own work at this point. Seemingly not even SOSORT will fund him (if SOSORT funds people, I don't know).

    In terms of the brightness in the darkness scale, we are approaching single photons I would say.

    Just my opinion.
    Last edited by Pooka1; 09-06-2009 at 09:25 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Quote Originally Posted by Pooka1 View Post

    Here's what we have w.r.t. Mooney as far as I know:

    1. published a few papers (of questionable conclusions IMO).

    2. got at least one other surgeon to do a study on torso rotation

    3. that other surgeon is no longer studying torso rotation

    4. he is having to fund his own work at this point. Seemingly not even SOSORT will fund him (if SOSORT funds people, I don't know).

    In terms of the brightness in the darkness scale, we are approaching single photons I would say.

    Just my opinion.

    Here is Dr. Mooney's CV....perhaps if you look at it you might change your mind and think perhaps that he knows a little bit more about this than you do. I know it's hard to do when you already know everything...but hey...perhaps some photons can make it into your black hole.

    http://www.spineandsport.com/ussp/St...rtMonneyCv.htm

    And a lifetime achievement award, where he ranks right up there with Dr. Nachemson from Sweden....whom we all probably recognize at this point.

    http://www.spineandsport.com/foundat...ss_release.htm

  13. #13
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    How many papers has he published on torso rotation?

    How do you explain the quality of the ones Dingo posted? You (the general you not you personally obviously) can see the problems with that study a mile away.

    Do you understand what I'm talking about?

    Let's not forget Linus Pauling and the Vitamin C thing. Pauling is the only person to ever win two solo Nobels AFAIK and we still have the Vitamin C thing.

    Do you understand why that is possibly relevant and why it undermines your point?
    Last edited by Pooka1; 09-05-2009 at 07:48 PM. Reason: spelling "Nobels"
    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."

  14. #14
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    Hi BCPutnam,

    I just wanted to suggest to you that if your son's curve reaches twenty degrees, I would seriously consider bracing him, changing orthopedists if necessary. You're very fortunate you caught the curve early. I don't believe exercise alone will stop the curve once a child is in their major growth spurt and it is progressing, the curves can really take off. Good luck!

  15. #15
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    Pooka,

    Don't forget that he is studying torso rotation right now, how many papers should he have published at this point? I suspect he'll be publishing a paper, once the study is complete. Sheesh...I think they were just recruiting a few months ago. Give him some time.

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