Originally posted by Ballet Mom
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The ethics of bracing (and PT) with a Scoliscore <41
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mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Originally posted by Ballet Mom View PostI don't respond to lots of things you say, because it's an endless battle. It doesn't mean I agree with you......
I don't surgeon bash. I am very happy that these orthopedic surgeons are out there. I have truly liked every single surgeon my daughter has been seen by. That's your defensiveness showing and I have often wondered why.
Just because you think bracing is unbearable, or conservative treatment doesn't work, lots of people disagree with you.
Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Originally posted by mariaf View PostHere we go again making it personal - it's a shame as it really takes away from the discussion.
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I rest my case.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Originally posted by mariaf View PostAnd yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?
Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.
What makes you think they aren't being completely honest? What makes you think they don't know EXACTLY what Scoliscore measures and that they explain EXACTLY that? This is just more of your surgeon bashing because you don't like some research result on an emotional level.
And what EXACTLY is the alternative to that future for those subsurgical patients? You can't get blood from a stone and we are taking about an extremely hard treatment here. Just because you think Scoliscore is imperfect doesn't majick some effective conservative treatment into existence.
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Originally posted by Pooka1 View PostThat's *all* the evidence will allow someone to care about, no? Outside of the world of evidence, people can and do care about a lot of things including the points you mentioned.
I don't believe evidence dictates what people care about. It only dictates what they can accurately predict.
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Originally posted by mariaf View PostAnd yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?
Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.
That doesn't follow. There is no rational reason for anyone to care what I say when they realize this isn't my field.
I am at a total loss. She can't have it both ways. That's why she was banging on and on and and on about this secretly being my field. Once she admits it isn't then there is no 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."
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Originally posted by hdugger View PostRight - they created the scolioscore specifically to predict the risk of progressing to surgical territory by the end of adolescence. So, if that's all you're interested in, then it's a great test. If, OTOH, you have other interests, like your child's health throughout their life, then it's not very helpful.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 PostThe reason I was thinking about this is Dr. McIntire suggested that avoiding surgery was not the only goal with conservative treatments which was complete news to me! Maybe he was only referring to PT and not to bracing. PT might still be ethical for these kids but it should be made absolutely clear that the risk of not doing it in terms of reaching surgical range is zero for most kids with small curves.
Assuming the above is true, I don't see how a study population could ever be assembled for bracing or PT among kids with a Scoliscore <41. I am guessing it is a game changer for conservative treatments wherein their potential study population has decreased a lot and they can only work with ~25% of kids with smaller curves.
I predict going forward that it will become increasingly harder and harder to publish a study on surgery avoidance without first showing that the subjects had a Scoliscore of >41. And when the measurement precision is considered in light of the relevant Cobb angle range in subjects with a Scoliscore <41, I don't think those studies will ever be conducted/published due to noise.
Scoliscore seems like it might be a real game changer if it stands.
I made that statement somewhat referring to those patients that, while they might have a low-moderate risk for progression/scoliscore, would still desire treatment to ensure as small of a curve as possible and/or the chance of reducing the curve. But as I thought about it some more, it seems like the same would apply to any patient.
From the validation study, in each of the 3 groups, there was ~50-60% of patients that had a mild/moderate curve with a scoliscore <41. The study groups the 10°-40° curves together so the number of patients with a low score but curve >30° isn't listed. As well, in two of the groups (spine surgery practice and males) there were 2 and 3 patients, respectively, that had a severe curve, >40° at risser <4 or 5 or >50° in an adult, but a score <41. An admittedly small number and so it would probably be fair to say that a majority of those with a score <41 would have a curve <30°, but that's just conjecture.
IMO, a surgeon removing a brace from a patient that had a score <41 isn't unethical. But I also wouldn't say it would be unethical for them to stay in a brace or seek PT if their curve is >30-35°. Now if we start a discussion about charging insurance or what promises are made about any given treatment or how small of a curve should be treated etc..., that's a different question and my answer would change depending on the specific question. But that's just my non-clinical opinion.
As far as doing research on kids with a score <41, I'd love to see results from the validation study of how well curve size correlates with score. Since the range of curves in that group would go from 10° up to 40° or 50°, I'd imagine the score doesn't correlate that well and there would be, as you mention, a large amount of noise. OTOH, it also seems like an interesting population to study. Kids that won't progress to surgery but still might develop a moderate curve would be a prime target for PT. At that point, you're not dealing with a progressing scoliosis that has an unchangeable genetic component to it but with a potentially progressing scoliosis that would appear to be due to other factors that are certainly correctable, e.g. rotational strength asymmetry (to use a completely random example).
The AIS-PT (Scoliscore) paper is pretty impressive to be sure. Even with the unknowns, it very clearly identifies those patients that have a low risk for progressing >40° which is pretty amazing. However, as has been said on here before, if it doesn't translate to adults avoiding surgery, then it's validity doesn't mean much. (I personally don't believe that but I haven't seen that mentioned very often in regards to the scoliscore.) An interesting study would be to do the genetic testing on a bunch of adults who had surgery to see what their scores are like. How many scores <180 are there? That would be a good one.
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Originally posted by Pooka1 View PostI really don't get it. She admitted (finally and grudgingly) that this isn't my field but then goes on claiming what I say might possibly matter to someone, anyone.
That doesn't follow. There is no rational reason for anyone to care what I say when they realize this isn't my field.
I have apparently been added to her ignore list so hopefully that will be the end of that.
Let's see.mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
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Originally posted by Ballet Mom View PostHas this comment been edited out by Pooka?
When you go over the line I try to supply a reason.
Can you see the difference?
You do bash surgeons. That is either true or not. If true, there is a reason.
None of that comes within a mile of CONSTANTLY accusing me of lying.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 PostETA: Are you implying surgeons who take kids out of braces in the face of a low Scoliscore are not taking a broader look and considering the entire evidence picture?
I have no idea why that number is interesting, outside of the adolescent scoliosis realm.
If what you're interested in is having a child who is likely *never* to progress to surgery or not likely to have pain in adulthood, then the magic number should be 30.
It is odd. I don't think I've ever seen another disease where the split between what the pediatric group cares about and what the adult group cares about is so profound. It's as if all of those adult scoliosis patients just magically appeared when they were 18, and not as if those were exactly the same patients who pediatric surgeons were tracking for lo those many years.
The whole scolioscore thing just reinforces that split. Who cares if your kid just escapes surgery in their adolescence? Why would I pay $2000 to find that out?
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Originally posted by Pooka1 View PostYou have accused me on more than one occasion about LYING about this being my field. That is over the line.
When you go over the line I try to supply a reason.
Can you see the difference?
You do bash surgeons. That is either true or not. If true, there is a reason.
None of that comes within a mile of CONSTANTLY accusing me of lying.
When have I bashed a surgeon? Ridiculous.
I'm saying you are advocating for this test and for surgical methods, for what reason...I haven't a clue. I question why you do this constantly. You place your advocacy pieces in places most likely to sway parents of scoliosis patients. Why is that?
Why do you think you have a better answer on how to treat scoliosis patients better than parents and patients in conjunction with the experience and wisdom of their surgeons?
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Originally posted by skevimc View PostAn interesting study would be to do the genetic testing on a bunch of adults who had surgery to see what their scores are like. How many scores <180 are there? That would be a good one.
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Could we move the (profoundly uninteresting) discussion of personalities between mariaf, balletmom, and Pooka off-thread? Really, truly, madly and deeply - the rest of us DO NOT CARE HOW YOU FEEL ABOUT EACH OTHER and we'd like to focus on the health of our kids rather than your interpersonal issues.
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