Page 11 of 13 FirstFirst ... 910111213 LastLast
Results 151 to 165 of 190

Thread: Gene Associated With Adolescent Idiopathic Scoliosis Identified

  1. #151
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    If there is a place for armchair biochemists working on idiopathic scoliosis etiology without a net (i.e., any relevant training in biology, chemistry, biochemistry, organic chemistry, physiology, anatomy, enodocrinology, metabolism, orthopedic surgery, microbiology(HA!), etc. etc. etc.), I don't know where it is but I hope it's far, far, far away from here.
    Last edited by Pooka1; 05-22-2013 at 07:41 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."

  2. #152
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by TAMZTOM View Post
    Ayn Rand, Atlas Shrugged...they all left to make a better place.
    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.

  3. #153
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    Quote Originally Posted by Pooka1 View Post
    If there is a place for armchair biochemists working on idiopathic scoliosis etiology without a net (i.e., any relevant training in biology, chemistry, biochemistry, organic chemistry, physiology, anatomy, enodocrinology, metabolism, orthopedic surgery, microbiology(HA!), etc. etc. etc.), I don't know where it is but I hope it's far, far, far away from here.
    I see you're still around though. How does that comport?
    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...”

  4. #154
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    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.
    I agree with everything you say, Hdduger. I too have had literally hundreds of emails from people who are sickened by the idiocy, "cognitive dissonance" and stupidity of the wee clutch of loonies who haunt this forum. Many of those who email are people who've had surgery! They too are academically offended by the idiots in here.

    "In here..." When I mention "leaving", it's not failing to apprise as many as I can that there are more successful ways than surgery to fix scoliosis. This place doesn't do that and never will. I give EVERYTHING to those people who contact me.
    Last edited by TAMZTOM; 05-22-2013 at 11:36 AM.
    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...”

  5. #155
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    I see you're still around though. How does that comport?
    I don't expound on scoliosis etiology except to point out misunderstanding in postings of others when I can.
    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. #156
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    I agree with everything you say, Hdduger. I too have had literally hundreds of emails from people who are sickened by the idiocy, "cognitive dissonance" and stupidity of the wee clutch of loonies who haunt this forum. Many of those who email are people who've had surgery! They too are academically offended by the idiots in here.

    "In here..." When I mention "leaving", it's not failing to apprise as many as I can that there are more successful ways than surgery to fix scoliosis. This place doesn't do that and never will. I give EVERYTHING to those people who contact me.
    Posting radiographic results is the only way to help. That happens less with non-surgical treatments for some reason.
    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."

  7. #157
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    Quote Originally Posted by Pooka1 View Post
    Posting radiographic results is the only way to help. That happens less with non-surgical treatments for some reason.
    Could you kindly post radiographic "proof" of the condition of your daughters spines before surgery, the supposed umpteen degrees of progression in .00001 of a day, and the condition of their spines since surgery. You suggest no progression, no rotation, no worsening of their LCs. I genuinely hope that is the case, but I only have your word for that and that, according to you, is no good.
    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...”

  8. #158
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    Quote Originally Posted by Pooka1 View Post
    I don't expound on scoliosis etiology except to point out misunderstanding in postings of others when I can.
    I don't bother pointing out your ignorance because I don't have the spare time you have; I have important things to do. E.g. have you discovered yet that there are in fact two lungs in the average human?
    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...”

  9. #159
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    Could you kindly post radiographic "proof" of the condition of your daughters spines before surgery, the supposed umpteen degrees of progression in .00001 of a day, and the condition of their spines since surgery. You suggest no progression, no rotation, no worsening of their LCs. I genuinely hope that is the case, but I only have your word for that and that, according to you, is no good.
    I posted before an after radiographs of both my girls.

    Will you ever allow radiographs again of your daughter?

    I am sorry you take such offense at the need for evidence. Conservative methods would get ZERO pushback from me at least if they ponied up proof of efficacy.
    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."

  10. #160
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    I don't bother pointing out your ignorance because I don't have the spare time you have; I have important things to do. E.g. have you discovered yet that there are in fact two lungs in the average human?
    Is that really necessary Tom? Why are you doing this?
    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. #161
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    I don't bother pointing out your ignorance because I don't have the spare time you have; I have important things to do. E.g. have you discovered yet that there are in fact two lungs in the average human?
    By the way, you are not pretending to be doing research in scoliosis etiology so that criticism was not directed at you. Studying PT treatment as you and Amom are doing is not in the same category as armchair biochemistry.
    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. #162
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    Quote Originally Posted by Pooka1 View Post
    Is that really necessary Tom? Why are you doing this?
    Doing what? I come in this forum very occasionally now, can't sacrifice the good work to deal with petty bickering. I've posted hundreds of times and rarely get any discussion on non-invasive treatments.

    I perhaps wrongly interpreted the above post as aimed at me, or folk like me.

    I cottoned on to the "proof" thing as it is an issue for all those contemplating surgery. Before and after surgery x-rays don't measure up to proof of how effective was the surgery. For me, "proof" of effective surgery would be reduction of pain, cosmetics (as that is what surgery aims to do), stopping rotation (which is doesn't do), not causing cervical and pelvic issues, IVD degeneration, etc., etc. These things are rarely mentioned. New instrumentation is causing increasing damage in some of these area. And let's not forget the loss of flexibility for life. Psychological damage. Etc.

    My daughter has not had surgery because I considered it an inferior option to non-invasive correction.

    On many of the above factors, YOU HAVE SEEN "proof" of my daughter's condition. E.g., you have photographs of her marked up spine and pointed out that even in the UNCORRECTED photo, her thoracic curvature was "clearly less than 25 degrees". You've seen her appearance. You know she's grown, in puberty, etc. She's doing ballet, resumed running, correcting with every movement.

    X-rays, in both our daughters' cases, are a waste of time offering nothing in the way of proof.
    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...”

  13. #163
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    Quote Originally Posted by TAMZTOM View Post
    I perhaps wrongly interpreted the above post as aimed at me, or folk like me.
    Yes you did. You and Amom and people like you are the only ones who can hope to make headway on the PT treatment front unless McIntire and other researchers start getting more research money. That is a contribution if you document things. There is no reason you could not publish your findings.

    Others opining about complex biochemisty in complex pathologies in a certain primate species as goes on in your absence is not helpful in my opinion. I don't dwell on the unhelpfulness; I point out the wrongness in those threads on specific science issues. They will NEVER publish their "findings."

    That's the different in a nutshell.

    I cottoned on to the "proof" thing as it is an issue for all those contemplating surgery. Before and after surgery x-rays don't measure up to proof of how effective was the surgery. For me, "proof" of effective surgery would be reduction of pain, cosmetics (as that is what surgery aims to do), stopping rotation (which is doesn't do), not causing cervical and pelvic issues, IVD degeneration, etc., etc. These things are rarely mentioned. New instrumentation is causing increasing damage in some of these area. And let's not forget the loss of flexibility for life. Psychological damage. Etc.
    What do you want beyond serial radiographs to document these things?

    My daughter has not had surgery because I considered it an inferior option to non-invasive correction.
    It is grossly inferior because she isn't surgical. She is not a candidate.

    On many of the above factors, YOU HAVE SEEN "proof" of my daughter's condition. E.g., you have photographs of her marked up spine and pointed out that even in the UNCORRECTED photo, her thoracic curvature was "clearly less than 25 degrees". You've seen her appearance. You know she's grown, in puberty, etc. She's doing ballet, resumed running, correcting with every movement.

    X-rays, in both our daughters' cases, are a waste of time offering nothing in the way of proof.
    I don't trust my eyeballing backs without radiographs. You are probably better at that than I am because I never practice it.
    Last edited by Pooka1; 05-22-2013 at 12:33 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."

  14. #164
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    PS: I just quickly skimmed a few posts in here and suspect that your comment was aimed at Dingo, not me?

    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.

    As for parents researching, many of them do a better job than researchers. Scientists. Etc. The history of medicine and science is replete with such examples. It is not logical to knock such endeavors.

    As for aetiology, I've said before that, for me, it's only relevant in so far as it illumines treatment. Dingo's research could help many people.
    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...”

  15. #165
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,332
    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.
    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."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •