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Thread: Gene Associated With Adolescent Idiopathic Scoliosis Identified

  1. #166
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    Quote Originally Posted by hdugger View Post
    I used to run online forums as a job, so I've seen that solution frequently. And I agree that it's unavoidable in this case if you want to have two posts in a row about the same topic and not post-jab-post.

    The reason I've resisted for so long is mainly what Flerc says. You're departing the stage for the wings. You're learning things which now only a very few people will know. And you're leaving behind only the steady drumbeat of "surgery surgery surgery" for any other parent coming to the biggest public forum in the US looking for advice about their child. Your child comes first - and I understand what you need to do for her - but there's a vacuum left behind.

    The second reason is more quirky, I suspect, on my part. I think much better when I'm talking to people who don't agree/don't see things the way I do. So, for me, a bit of tension, a bit of back and forth, is actually really helpful. But, obviously, non-stop disruptions and personal invectives go way, way past "a bit of tension".

    You know, I'd noticed that interesting, non-surgical posters had just sort of drifted off one by one and only come back to give updates - not to discuss any more. I didn't realize just how global it was until I saw one of the most interesting non-surgical posters come back for an infrequent update, and be immediately snagged by the other most interesting nonpsurgical poster and asked to join the other group. That's very, very smart to find really the best people all using different methods and all putting their heads together. And I completely understand why it can only happen in private. Can I ask a big favor? Can you throw up a website or a blog or something public and static and just post monthly reports there? Don't take comments - don't let it devolve into this. But just create a place where someone looking to see what other solutions there might be has a tiny window.
    Certainly we should to be talking only about genetics here. Her work as ever is excellent!
    So I said something about this in the only one place that should to be allowed for this:

    Quote Originally Posted by flerc View Post
    ...............

    ...

  2. #167
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    Quote Originally Posted by hdugger View Post
    You know, I'd noticed that interesting, non-surgical posters had just sort of drifted off one by one and only come back to give updates - not to discuss any more. I didn't realize just how global it was until I saw one of the most interesting non-surgical posters come back for an infrequent update, and be immediately snagged by the other most interesting nonpsurgical poster and asked to join the other group. That's very, very smart to find really the best people all using different methods and all putting their heads together. And I completely understand why it can only happen in private. Can I ask a big favor? Can you throw up a website or a blog or something public and static and just post monthly reports there? Don't take comments - don't let it devolve into this. But just create a place where someone looking to see what other solutions there might be has a tiny window.
    Hdugger, don't give up. The tide is turning! The non-surgical posters (and lurkers) are busy, busy fixing themselves and/or their children, they are smart enough to stay away from the negativity that will drag them down. This constant scrambling by Pooka1 to extinguish any flicker of light in the non-surgical treatment of scoliosis is pathological in itself. I agree with you completely. Yes, if there was another blog ;-) where these theories and ideas could be worked out and analyzed (where the motivation was purely to help FIX the person and not to take their money) that would be pure heaven!

    I am a non-surgical lay person without any sort of professional training, actually used to run heavy equipment for a living, so if my English is "no good", you'll know why! Now I am working on fixing my child's scoliosis. We have tried EVERYTHING else that the so-called experts have to offer and are FINALLY correcting, tremendously, on our own, thanks to one of those "most interesting non-surgical posters" who did not allow himself to be bogged down by the naysayers.
    "The most deadly action you can take is to internalize someone else's negativity, for once you start to believe it, youíre sunk."

  3. #168
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    Quote Originally Posted by Pooka1 View Post
    You know, Tom, I understand you have many people who you are advising. You really could try to publish the results if you have enough people doing the same thing. Or at least post the results here. That would help folks a lot.
    I know people that could post their amazing cases and I cannot criticized them to donít want nothing to do in a Forum like this.

  4. #169
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    Quote Originally Posted by tamztom View Post
    ps: I just quickly skimmed a few posts in here and suspect that your comment was aimed at dingo, not me?
    yes! Ding! Ding! Ding!

    dingo is doing a wicked job of researching and learning as much as possible so that he can help his son. He is in possession of a fine brain. Knowledge is empowering him, helping his kid and spreading the word that everyone should be seeking better treatment, whether that be non-invasive or surgical. That is commendable.
    I agree Dingo is intelligent. It's not a question of intelligence but one of specific knowledge. Big difference.
    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."

  5. #170
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    Quote Originally Posted by flerc View Post
    Certainly we should to be talking only about genetics here. Her work as ever is excellent!
    So I said something about this in the only one place that should to be allowed for this:
    As always, you are correct. Here we are (intelligently, helpfully) completely trashing Dingo's thread. Sigh. How that man manages to get any work done here completely gobsmacks me. He must mediate himself into a pure light Zen state before every post

  6. #171
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    Quote Originally Posted by Victine View Post
    Hdugger, don't give up. The tide is turning! The non-surgical posters (and lurkers) are busy, busy fixing themselves and/or their children, they are smart enough to stay away from the negativity that will drag them down. This constant scrambling by Pooka1 to extinguish any flicker of light in the non-surgical treatment of scoliosis is pathological in itself. I agree with you completely. Yes, if there was another blog ;-) where these theories and ideas could be worked out and analyzed (where the motivation was purely to help FIX the person and not to take their money) that would be pure heaven!

    I am a non-surgical lay person without any sort of professional training, actually used to run heavy equipment for a living, so if my English is "no good", you'll know why! Now I am working on fixing my child's scoliosis. We have tried EVERYTHING else that the so-called experts have to offer and are FINALLY correcting, tremendously, on our own, thanks to one of those "most interesting non-surgical posters" who did not allow himself to be bogged down by the naysayers.
    I've worked on fixing my own scoliosis as well, as I've mentioned in Tamztom's thread. I just returned from Wales, and find myself waking up with a better back every morning. I'm happy to call him my friend. I would not at this point even dream of posting details on this forum, due to time and negativity constraints better spent in pursuit of more efficient, focussed results. Timing is everything. Even if he posted results at this point, which would profoundly affect his own time and energies, I'm not sure if there will be a way to clone Tom's brain and talents. Therein lies the problem. Not too many brilliant nonsurgical spinal composer/conductors on the planet.
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  7. #172
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    Sorry Dingo. Not meaning to mess up your thread.
    "The most deadly action you can take is to internalize someone else's negativity, for once you start to believe it, youíre sunk."

  8. #173
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    Yes, Dingo. Another one out of line. Apologies for the wandering.
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  9. #174
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    Yes, apologies Dingo for me leading the thread astray. Keep up the wise work.

    Regards
    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'. ďIn consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...Ē

  10. #175
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    Quote Originally Posted by hdugger View Post
    As always, you are correct. Here we are (intelligently, helpfully) completely trashing Dingo's thread. Sigh.
    see this post

    Quote Originally Posted by flerc View Post
    .
    ...
    .
    .
    .
    Last edited by flerc; 05-22-2013 at 01:10 PM.

  11. #176
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    Quote Originally Posted by flerc View Post
    I know people that could post their amazing cases and I cannot criticized them to donít want nothing to do in a Forum like this.
    I don't know anyone criticizing Tom's work. No one is jumping on his thread and trashing him. GENETICS is what drew me to this thread. It turned out to be about anything but...

    Yes, I agree Dingo is very intelligent. There are many, many very intelligent people on here. We all need to be a little more open minded, including Dingo and including myself (I've watched my own trends open up a bit since I've started out). But, I stand by my promise about taking him and his wife to dinner as a victory celebration if ALL idiopathic scoliosis is caused by a pathogen. I'm not patronizing. I mean it. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #177
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    (tidying up the topic and fluffing the pillows for Dingo's return from Disneyland)

    I'm not particularly interested in genetics as genetics in these kinds of disorders, but I am interested in genetics helping to clarify how a disorder works or what a treatment might look like.

    Here's a recent article about genetics confirming something people already talk about in scoliosis - taller pubertal stature and accelerated growth rate .

    http://journals.lww.com/spinejournal...f_Peak.10.aspx

  13. #178
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    Newton, perhaps the smartest person who ever lived, didn't know a damn thing about scoliosis etiology.

    Darwin, who had the single most clever idea in the history of mankind (along with Wallace), couldn't tell you anything about scoliosis etiology.

    It is very likely Einstein knew nothing about it either.

    That's the point.
    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. #179
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    (don't have time to look up another interesting study at the moment - let's just use this as a placeholder and pretend I said something interesting . . . maybe I'll find something)

    Not on topic, but, hey, at least it's about scoliosis!!

    http://www.scoliosisjournal.com/content/1/1/3

    The transformation of spinal curvature into spinal deformity: pathological processes and implications for treatment
    Last edited by hdugger; 05-22-2013 at 07:07 PM.

  15. #180
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    (trying to get to two posts in a row on topic . . . have to start over . . . don't have time to look up another study . . . just pretend I said something interesting in case I don't find something later)

    OK, not exactly on topic, but still interesting. I'll also post this in the general research area

    http://www.scoliosisjournal.com/content/1/1/5

    Indications for conservative management of scoliosis.
    Last edited by hdugger; 05-22-2013 at 07:05 PM.

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