Originally posted by Ballet Mom
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More Good Evidence Bracing Works in AIS
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Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by Ballet Mom View PostThe orthopedists would know if most peoples braced spines were collapsing later on in life. They're not dumb.Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by LindaRacine View PostThey started out the study with more patients than they ended up with, by removing some patients who had psychological issues and removing at least some of the kids who wore the brace less than 13 hours.
•Spinal range of motion, muscle endurance, and back pain and function at least 20 years after fusion or brace treatment for AIS
•Back pain and function 23 years after fusion for AIS
•Childbearing, curve progression, and sexual function in women 22 years after treatment for AIS
•Radiologic findings and curve progression 22 years after treatment for AIS: comparison of brace and surgical treatment with matching control group of straight individuals
•Long-term results of the Harrington operation. Apropos of a series of 200 cases (1964-1986)
Your studies are all approximately twenty years time frame. Longterm outcomes would mean another twenty or thirty years on top of that. They simply don't know the longterm outcomes of these surgical procedures. I remember the bracing study done by the Swedes that showed no increase in curve size of 35 degree curves after twenty years time and that still wasn't a long enough time to convince this group that bracing was worthwhile because something might happen decades later. The same thing applies to surgical results.
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Originally posted by LindaRacine View PostNot even close to factual. Most pediatric specialists do not see patients once they turn 18. We get people in our clinic all the time, who were braced as kids, were told that they were good to go, and who have now progressed on to needing surgery. Most of the time, their pediatric doctors don't have a clue that these patients are requiring additional treatment.
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Originally posted by Ballet Mom View PostYes, I see going back to the video that they had to actually complete the brace treatment.
Your studies are all approximately twenty years time frame. Longterm outcomes would mean another twenty or thirty years on top of that. They simply don't know the longterm outcomes of these surgical procedures. I remember the bracing study done by the Swedes that showed no increase in curve size of 35 degree curves after twenty years time and that still wasn't a long enough time to convince this group that bracing was worthwhile because something might happen decades later. The same thing applies to surgical results.Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by Ballet Mom View PostI didn't presume that it would be the pediatric surgeons that would be seeing the patients. But I would certainly think that if the adult surgeons felt most curves were progressing if the patient had been braced, they'd be letting the pediatric surgeons know about it. And what portion of that is due to lumbar degeneration due to an aging spine that would probably occur if they had been fused anyway or even due to the fusion itself?
I agree that some (maybe even most) of the progression may be due to degeneration. So, let's just fuse everyone to the sacrum at 12, and be done with it. ;-)
You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by LindaRacine View PostIf the pediatric surgeons are listening, they've been presented with plenty of evidence.
I agree that some (maybe even most) of the progression may be due to degeneration. So, let's just fuse everyone to the sacrum at 12, and be done with it. ;-)
You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.
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Originally posted by LindaRacine View Post
You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.
The other side is faith and wishful thinking.
Science is the only game in town.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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A 50 year follow-up is ridiculous. Many of the 'braced' group would be dead by then, and as far as the adults having fusions most of them would be dead if they were over 40 years old. Ask any 90 y/o how they feel. I think longer follow-ups should be required for the brace group, but not 50 years for cryin' out loud. I would think 10 to 20 year follow-up would be sufficient for the surgery group, depending on how old they were at the time of surgery. We all age. We scoli people may age harder on our spines, but as was mentioned, most aging adults have back pain from one thing or another. This can't be attributed to lack of success of either option. It should always be noted that if someone was braced and went on to have fusion due to scoliosis later on that bracing was not a success. These should be kept track of. The fact that the patients outlive the doctors should have no bearing on the subject. Medical records for this condition should be kept FOREVER for everyone. Sadly they are not. My initial records and x-rays were destroyed after 7 years. I think the practitioners should wake up and smell the coffee on this one. They should be required to submit this information into a central database. Unfortunately, medical privacy laws will likely prevent this from ever happening.
As far as the newer techniques of VBS and whatever else is out there being developed that is less invasive than fusion, I think that would be the more humane route to go vs. bracing. One surgery vs. years of bruising and pressure sores, not to mention the bulkiness of the brace and the effect on self-image. But again these procedures need years of follow-up, too, to make sure that an all out fusion isn't needed later on.
That's my take on the whole thing.
As far as spines progressing only when they reach 50* as an adult, that's a bunch of hockey. I have one curve that was like 18-20* at 18 years old. It is now 38* and considered a major curve, when before it was only a compensatory curve. I'm sure that there are many more like me out there.Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by rohrer01 View PostIt should always be noted that if someone was braced and went on to have fusion due to scoliosis later on that bracing was not a success. These should be kept track of.
As far as the newer techniques of VBS and whatever else is out there being developed that is less invasive than fusion, I think that would be the more humane route to go vs. bracing. One surgery vs. years of bruising and pressure sores, not to mention the bulkiness of the brace and the effect on self-image. But again these procedures need years of follow-up, too, to make sure that an all out fusion isn't needed later on.
As far as spines progressing only when they reach 50* as an adult, that's a bunch of hockey. I have one curve that was like 18-20* at 18 years old. It is now 38* and considered a major curve, when before it was only a compensatory curve. I'm sure that there are many more like me out there.
And I agree with you that is appears to be some conversion of formerly compensatory curves to structural ones. Thoracic curves account for the majority of curves AND for the majority of progressive curves. That combination should result in the bulk of adult surgeries being for thoracic curves. But based on the testimonials here, we don't see that at all. We see longer fusions to involve the lumbar. The conversion of T curves to double majors needs to be quantified and parents need this information. Dr. Hey bangs on quite a bit about how fusions could be shorter and not involving the lumbar if done earlier. He has several posts on this issue.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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Dr. Hey is very choosy about who he sees. I had scheduled a consult with him at his urging and he cancelled it. He didn't give me a really legitimate "reason". He did, however, go over my x-rays with me and gave me a LOT of information. The docs around here aren't as progressive in their thinking as he is. He gave me the impression that since my curve was progressing that it should be fused even though it was under 50*.
Although, I can honestly say, that if they could have made a brace to help my curve, which they couldn't because of its location, I would have been one of the kids to jump at the chance to wear it in hopes of it helping, simply for pain "reduction" if nothing else. I might have been in for a big shock, though, when the reality of the discomfort set in. Who knows if I would have been compliant or not. I'm just not in to pain.
I really feel sorry for the kids who fall through the cracks. I chose to do nothing with my kids and my daughter has back pain, but her scoli doesn't look bad. I have no idea how bad her scoli is, since I listened to that stupid sports ortho and didn't follow up,...ever. I just looked at my 19 year old son't back the other day while cutting his hair. His spina bifida looks like it covers a span of about 3 or 4 vertebrae in the lower T-spine and his slight curve has returned. I don't know if it would appear that way on x-ray or not. It may just be some assymetry. But it looks to me like a TL curve. Either way my kids wouldn't have benefited from bracing because they aren't that bad now and are both grown. My son is an exercise freak and very muscular, although he thinks he's scrawny, but I have always thought that exercise is good for everyone with back problems.Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by rohrer01 View PostA 50 year follow-up is rediculous. Many of the 'braced' group would be dead by then, and as far as the adults having fusions most of them would be dead if they were over 40 years old. Ask any 90 y/o how they feel. I think longer follow-ups should be required for the brace group, but not 50 years for cryin' out loud. I would think 10 to 20 year follow-up would be sufficient for the surgery group, depending on how old they were at the time of surgery.
No matter what the early treatment is, a good percentage of patients are going to go on to requiring additional treatment later in life. so, to me, the bottom line is that we need to know the real story for all of these patients, so that patients can start making informed decisions based on not just what is happening now, but what will happen 20, 30, 40, or 50 years from now. For some people, putting off surgery for 40 years may be perfectly acceptable, while for others, it could be totally unacceptable. --LindaNever argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
Comment
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Yeah, for some reason I was thinking they would be 78 and not 68 and comparing that to the "average" life expectancy. I recant that statement.
I realize that there are MANY people that live beyond 78, but many do not. With that taking into consideration the fact that most elderly people suffer from arthritic changes. You can't blame everything on scoli, although our spines do have a much harder wear and tear than most.Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by hduggerFor some reason, bracing is considered to have "failed" if the patient ever requires surgery, while, for people needing revision surgery it's somehow deemed "successful" because it gave them 10 or 20 good years. Either needing surgery later in life is a failure for both, or putting it off for 10 or 20 years is a success for both. We can't make an adequate comparison unless success and failure are defined in the same way for both.
There is no sane person who would brace if the hope wasn't to avoid surgery. Nobody. You can't even get some kids to comply even when they have been convinced (i.e., lied to) that not wearing the brace will result in surgery.
Success of bracing and success of surgery are apples and oranges because one is to avoid the other.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 hduggerFollowing back on Ballet Mom's earlier question, what kind of sense do the Scolioscore people make of this study?
Either "mental troubles that keep people from successfully bracing" is the genetic thing being measured by their test, or these results just don't mesh with their results at all.
Let's see if this study makes it through peer review into publication. It may not.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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