I'm now part of a system that abuses young girls because of unfounded dogma

Discussion in 'Soap Box' started by aoeu, May 12, 2011.

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  1. aoeu

    aoeu Well-Known Member

    Not triggering, I don't think.

    What is this, a reformed Catholic church with altar girls being assaulted by priests instead of altar boys?

    Nope, it's scoliosis treatment. This summer I'm researching some aspects of bracing and surgery. Scoliosis affects primarily girls (97% of cases, IIRC); it's curvature in the spine (when view from the front or back). It decreases lifespan by approximately 14 years by hurting heart and lung function.

    Let's start with the assumption that surgery is safe and effective.

    Bracing is used as a first defence to prevent surgery from being necessary. It has well-documented psychosocial harm associated. And at least one study indicates it does not prevent surgery; no study demonstrates that it prevents surgery. Indeed, studies have shown that bracing decreases quality of life. So, bracing is probably unethical. But it's done every day anyhow.

    Now let's check that assumption: scoliosis surgery is major surgery requiring anesthesia and involves drilling holes in the spine. Possible side effects include urinary tract infection, bleeding, reduced mobility, and even death. It has been shown to not decrease pain. Heart and lung function are not improved. 49% of surgery patients report psychosocial harm. It's not permanent, a serious case will be just as bad as it was before the surgery within 20 years. One surgery often isn't sufficient. So, surgery is probably unethical. But it's done every day anyhow.

    How can I go on with this?
     
    Last edited by a moderator: May 12, 2011
  2. Axiom

    Axiom Account Closed

    I don't know. Had to read this twice to be honest. Are there any groups of people with this condition you can talk to?

    Sorry I don't know, do you have this condition or know someone with it?
     
  3. aoeu

    aoeu Well-Known Member

    I'm in a research position researching "treatments" for it. I don't really like that I'm in it, but I won't be doing any harm, I guess.

    Though I've done a bit more research, it's not as bad as my first post makes it sound. Not treating, bracing, and surgery all have about the same quality of life - but at the expense of social ostracism and major spinal surgery, for the latter two, respectively. Surgery -slightly- increases quality of life in another study, but not to a "clinical significance".

    So it's major surgery that is likely to do nothing at all.
     
    Last edited by a moderator: May 16, 2011
  4. Lovecraft

    Lovecraft Well-Known Member

    I have as of yet to come across any decent sources that bracing and/or surgery are truly ineffective. I'm sure that depending on the cause and quality of the surgery and/or the limited extent to which it could be corrected surgically it's very possible symptoms will reemerge but the same can be said of cancer surgery, carpal tunnel surgery, cosmetic surgery, getting braces on your teeth, getting a broken limb reset, etc. Furthermore general anesthetic and bad surgery side effects, up to an including extreme potential complications such as dying, are taken fairly often by people for considerably less meaningful surgery. (Getting general anesthetic alone can be a risk if you have a problematic allergy nobody knows of and/or you're in the care of less than reputable anesthesiologist. )

    Some people go into surgery for stomach stapling, tummy tucks, etc. and all of them have a warning about the rare but nonetheless potential problems with anesthetic and complications leading to death.
     
  5. aoeu

    aoeu Well-Known Member

    Well, plastic surgery is ridiculous but at the very least it's not fucking with the spine. Stomach stapling is generally required to be medically necessary before doctors will do it. And you know what you're getting out of plastic surgery - girls going into scoliosis surgery expect an improvement in their situation which is pretty much not going to happen.

    By the way, the onus of proof isn't on braces/surgery being ineffective, it's been demonstrated that they're harmful already and it's NOT been demonstrated that they're useful - the onus is definitely on the pro-surgery/bracing side based on available research.
     
  6. MLKane

    MLKane Well-Known Member

    Re: I'm now part of a system that abuses young people because of unfounded dogma

    I'm a male scoliosis patient. My scoliosis is mainly in my single digit and early teens vertebre, if we are counting them upwards from the base of the spine. The doctors inform me that the only treatment worth doing on me would be surgery, but because my back isn't twisted by more that 30 degrees they don't want to do it because there won't be much gain. From what I understand, the surgery would make the scoliosis less of an issue now and less likely to get worse in later life. However, as you point out, it's a very risky major surgery. I do think it is worth it in patients with the over 30 degrees twist, simply because it is torture to live with a spine so twisted, it's difficult living with mine, but 30 degrees is worse. The surgery straightens the spine, therefore relieving the pain and discomfort that the patient feels. It's not a permenant fix, but I'd say it's not useless either. and certainly not abuse, unless used on cases with like only 5 or 6 degrees twist.
     
  7. hornbeam

    hornbeam Well-Known Member

    Re: I'm now part of a system that abuses young people because of unfounded dogma

    A friend of mine she is 24 has had the operation for scoliosis - I dont know how much of the twist she had - however she was very well informed and it in know way is abuse.

    In fact she couldnt have the operation done in U.S.A so came to England to have it done - she let us say is not backward in coming forward and finds out about everything before she has things done. She is one of these people that knows all her rights regards many issues.

    I think people should be a bit more careful about bandying the word abuse about - I dont think she had the operation done for the fun of it.
     
  8. aoeu

    aoeu Well-Known Member

    Re: I'm now part of a system that abuses young people because of unfounded dogma

    MLKane, hornbeam, the problem is that for any angle it doesn't do anything. There is little-to-no improvement in pain and little-to-no improvement in cardiopulmonary function. There is no evidence that it is significantly useful in any of the research done on it.

    But spinal surgeons tell patients that it does. This is a complete lie.

    Okay, that's not exactly it. The surgery provides significant curve correction. This is the standard of treatment in scoliosis. The problem is this: curve correction has never been shown to be important to the well-being of the patient. This seems like it should correspond to improvement of symptoms, but it doesn't. Surgeons should know this, the evidence is out there.

    It's maybe not abusive (I was overzealous in my first post) but it's at least negligent, probably reckless.
     
    Last edited by a moderator: May 17, 2011
  9. MLKane

    MLKane Well-Known Member

    How could curve correction not help symptoms. Scoliosis IS the curve of the back. You correct the curve, even temporarily, and you correct the symptoms for however long that curve is corrected. The entire problem is the curving of the back, how can solving the curve not solve the problem???
     
  10. aoeu

    aoeu Well-Known Member

    That is probably the most important question in scoliosis treatment.

    One major problem is that 2D curve correction is the standard, while scoliosis is a 3D deformity.
    Another thing is that the ribs deform as well, surgery doesn't correct that (actually, surgery to trim the ribs [still major, but much less invasive than standard treatment] can help fix the spinal curve).
    The vertebra are also deformed by scoliosis, surgery doesn't correct that.
    The muscles are different somehow in scoliosis, perhaps fundamentally, surgery doesn't correct that.

    But regardless of the reason, curve correction (in its standardized form) does not necessarily correlate to an improve condition, this has been proven.

    It occurs to me that spinal curvature may be a symptom, not the cause, of the problem... But that's pure speculation and other than the rib thing I have no idea what might be the cause if that's the case.
     
    Last edited by a moderator: May 17, 2011
  11. MLKane

    MLKane Well-Known Member

    I can see why an insufficient curve correction would be ineffective. However, I've got really low lower back scoliosis. No rib distortion. I am pigeon chested, but that predated the scoliosis. I also have an unrelated loose ligament problem, which potentially worsens the scoliosis for obvious reasons. I don't know about deformed vertebra but I think they'd have mentioned that lol.

    I mean, if I was speculating on an alternate cause, I'd look at lax ligaments. I mean, bones to bones connections which are lax, vertebra are bones, lax connections allows for lateral movement. Twisted bones cause muscles to grow unevenly to the sides of the vertebra, either worsening or simply maintaining the distortion. but I'm no doctor, I have no idea how you'd go about testing that, but meh, smiles all round :)
     
  12. aoeu

    aoeu Well-Known Member

    Correction of every aspect of the spinal deformity might do it. But they can't do that.

    You definitely have deformed vertebra. They have to interface with each other at different angles than a vertical column, which means they have to be shaped for that. I'm quickly discovering that there's a lot they may not be telling you.
     
  13. MLKane

    MLKane Well-Known Member

    gah, they're doctors, it's their job to lie. There's a reason everyone in my friendship group calls them Leaches, and it's not just about the ancient practice of bloodletting.

    No offense if you're an MD, I have trust issues, they rub off on the people around me :D
     
  14. aoeu

    aoeu Well-Known Member

    This thread is about me not trusting MDs :p I trust that they're trying to do the right thing but they're doing it badly... A more cynical individual might note that 1/3 of spinal surgery is scoliosis surgery so if that was banned for non-research purposes (what I would like to happen) 1/3 of spinal surgeons would be unemployed so they have a fairly significant financial interest in this maltreatment...

    Right, another thing: scoliosis is typically accompanied by axial twisting. That's another of the sources of vertebral deformation (another thing not measured by curve correction measuring techniques).
     
  15. MLKane

    MLKane Well-Known Member

    :D do you mean the vertebra are not like facing in the right direction. so if you put them flat on a set of axis with the round face facing you, where they'd normally have the sticky out bit (technical! :O) facing 90 degrees, it's instead like 65 or 124 degrees? because if that's the case, then yeah, you can feel the sticky out bits on my back are not all pointing in the same direction lol
     
  16. aoeu

    aoeu Well-Known Member

    I think so, yes. The spinous process should be straight posterior but it's a bit off in scoliosis.

    So, scoliosis involves a left-right deformation, a forward-back deformation, and a rotational deformation. Curve correction only looks at the first. This is probably the main factor in why curve correction doesn't predict improvement in condition. Surgery cannot fix the rotational deformation, not even with a better technique, because the rotation also includes vertebral deformation, not just positional change. The forward-back deformation might be fixable in surgery, but it's currently not considered.

    Are you getting the idea now that curve correction does not reverse scoliosis?
     
  17. Lovecraft

    Lovecraft Well-Known Member

    Well the medical industry, particularly in America with more lax laws and more corporately inclined hospitals, is mainly plagued by the problem of money vs patients... and money usually wins. If there were a cure for AIDS pharmaceuticals would suppress it and, I've no doubt, kill people to keep it from coming to light. AIDS meds are just so profitable. In the same vein there have been very promising advances with THC and DCA in controlling and potentially shrinking tumours; advances you can find scattered articles about from 2007 until now. There's decent reason to investigate these drugs aggressively to see what they can do but there's relatively little interest in seems. Coincidentally THC occurs naturally in marijuana and DCA is a simple molecule that's easy to manufacture cheaply but can't be patented.

    The people that make drugs don't want to make a tiny profit selling cheap pills that work quickly then aren't needed, they want people stuck for life on products they can gouge customers for because they own the patent.
     
  18. MLKane

    MLKane Well-Known Member

    I'm sure vertebral distortion could be fixed, it would just require a lot of prep and like an 8 hour surgery. You could use CT or MRI scans to build up a picture of the deformed vertebra, then have wedges (more exact shaping, but you get the idea) made that can be pinned to the bone, then the surgeon goes in, skims off some of the bone with a saw and adds the wedges in to even things up. this process could be done at the same time as the Z and X plane distortion is altered. The surgery would be risky and long, probably require several surgeons working on the same area. if a method could be worked out which limits the chances of damage to the spinal cord to an acceptable level the I'd be happy to go along with that. stick some more bits of metal in me, why not eh? ;)
     
  19. aoeu

    aoeu Well-Known Member

    Right, more questionable surgery is the answer!
     
  20. MLKane

    MLKane Well-Known Member

    I'd rather try to get better than just accept I'm fucked up forever. I have so many disorders which I can never do anything about. I like to at least hold on to the idea that something about me can be treated.
     
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