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.
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Gene Associated With Adolescent Idiopathic Scoliosis Identified
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Originally posted by TAMZTOM View PostAyn Rand, Atlas Shrugged...they all left to make a better place.
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.
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Originally posted by Pooka1 View PostIf 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.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...”
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Originally posted by hdugger View PostI 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.
"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, 10:36 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...”
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Originally posted by TAMZTOM View PostI see you're still around though. How does that comport?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."
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Originally posted by TAMZTOM View PostI 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.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."
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Originally posted by Pooka1 View PostPosting radiographic results is the only way to help. That happens less with non-surgical treatments for some reason.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...”
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Originally posted by Pooka1 View PostI don't expound on scoliosis etiology except to point out misunderstanding in postings of others when I can.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
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Originally posted by TAMZTOM View PostCould 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.
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."
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Originally posted by TAMZTOM View PostI 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?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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Originally posted by TAMZTOM View PostI 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?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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Originally posted by Pooka1 View PostIs that really necessary Tom? Why are you doing this?
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...”
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Originally posted by TAMZTOM View PostI perhaps wrongly interpreted the above post as aimed at me, or folk like me.
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.
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.Last edited by Pooka1; 05-22-2013, 11:33 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."
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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...”
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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."
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