Originally posted by concerned dad
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Why I decided to brace my daughter with the SpineCor
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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 concerned dad View PostWe are probably boring the heck out of people.
(Just because we're not posting, it doesn't mean we're not reading avidly )UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
Surgery due to take place early December 2011 at the RNOH, England.
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Weaning/JIS patients
This probably is best addressed to Christine2, who has a young daughter in Spinecor, or anyone with familiarity with Spinecor and JIS patients. Do you anticipate that she will have to remain full-time in the Spinecor brace until skeletal maturity despite her correction (I'm not sure if that is in-brace or out of brace--it's my recollection that Spinecor does not emphasize out of brace xrays until later in the bracing process)? Are there more criteria for initiating the weaning process than maturity?
Thanks, mamandcrmmamandcrm
G diagnosed 6/08 at almost 7 with 25*
Providence night brace, increased to 35*
Rigo-Cheneau brace full-time 12/08-4/10
14* at 10/09 OOB x-ray
11* at 4/10 OOB x-ray
Wearing R-C part-time since 4/10
latest OOB xray 5/14 13*
currently going on 13 yrs old
I no longer participate in this forum though I will update signature from time to time with status
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By the way, interesting discussion. Thanks for the detailed look at the research.mamandcrm
G diagnosed 6/08 at almost 7 with 25*
Providence night brace, increased to 35*
Rigo-Cheneau brace full-time 12/08-4/10
14* at 10/09 OOB x-ray
11* at 4/10 OOB x-ray
Wearing R-C part-time since 4/10
latest OOB xray 5/14 13*
currently going on 13 yrs old
I no longer participate in this forum though I will update signature from time to time with status
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Important caveat
I think it needs constant emphasizing that nobody in this discussion has as their field bracing research. Nobody is an orthopedic surgeon.
While it might look like we are doing detailed analyses of the papers, I strongly suspect I, at least, am missing a boatload of important information. My critiques can only go so far and, by definition, just can address the scientific method as opposed to this field in particular.Last edited by Pooka1; 01-11-2009, 08:58 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."
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Originally posted by concerned dad View PostOK, it looks like the weaning period takes 6 months.
At the weaning evaluation visit, the patient is xrayed (after not wearing the brace for 72 hours).
Then, the brace is put on and another in brace xray is taken
if the two differ by less than 5 degrees, weaning commences
Weaning consists of wearing the brace 10 hours a day for 6 months, then
show up for appt after NOT wearing the brace for 3 days (72 hours).
Take out of brace xray
Then take in brace xray
If difference is less than 5 degrees, complete discontinuation of brace.
Someone correct me if I'm wrong but this seems to be a case where the weaning period was identical to the "magic" 2-year period post-bracing.
In other words, they are technically following the criteria to present data from 2-years post "bracing" but the patient wore the brace about half the day, every day for the entire 2-year period!
Are we on Candid Camera???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 PostI think it needs constant emphasizing that nobody in this discussion has as their field bracing research. Nobody is an orthopedic surgeon.
While it might look like we are doing details analyses of the papers, I strongly suspect I, at least, am missing a boatload of important information. My critiques can only go so far and, by definition, just can address the scientific method as opposed to this field in particular.
The more I look at this stuff, the more I realize how little I know.
Good reminder Sharon
As an example, although I'm too tired now to go into it in detail, I see what the problem with the Nachemson paper is. It has to do with how they grouped curve types between the control group and the braced group.
From a 1999 paper by Dickson in Spine discussing Nachemson.....
One hundred and eleven braced patients were compared to 129 observed and 46 electrically stimulated. The failure rate was an increase in Cobb angle by 6°. On this basis 36% of the braced, 52% of the observed, and 63% of the stimulated failed and these differences achieved statistical significance. The next paper in the same journal looked at factors that affect natural history
and one of the most compelling features was that thoracic curves had a much worse prognosis than thoracolumbar curves. Looking now at the proportions of the more progressive thoracic curves in the three trial groups, 89% were thoracic in the stimulated group, 81% in the observed group, and a mere 68% in the braced group. Meanwhile, in the paper originating in Puerto
Rico, 70% of the untreated group had thoracic curves and 46% of the treated group. It would be difficult to stack the odds better.
maybe i should further tone down my criticism of Dolan in my post above.
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Good analysis, Concerned Dad.
There are other issues in that paper besides the one you mentioned.
This issue of stacking patients in one or the other group, whether it is conscious or not, makes the case for individual-based modeling in my opinion.
If they had simply shown distribution profiles in the original paper, it would never have been published in my opinon. Why the reviewers didn't ask for them, I don't know.
I continue to question the peer-review and editing in these journals.Last edited by Pooka1; 01-12-2009, 07:31 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."
Comment
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Originally posted by Pooka1 View Post24 month weaning
Someone correct me if I'm wrong but this seems to be a case where the weaning period was identical to the "magic" 2-year period post-bracing.
In other words, they are technically following the criteria to present data from 2-years post "bracing" but the patient wore the brace about half the day, every day for the entire 2-year period!
Are we on Candid Camera???
--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
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Something squirrelly about the weaning
Based on the criteria posted about indication for weaning, I am guessing the majority of patients are simply slowing the curvature relapse during the weaning period and only stop when they hit their original (or higher) Cobb angle. Spinecor is new enough such that they can squeeze a few more papers out in the mean time which will later be (or should be) retracted.
I want to see the percentages of patients who:
1. needed at least one weaning period (of 6 months)
2. of those, the percentage who needed two weaning periods
3. of those, the percentage who needed three or more weaning periods.
4. The percentage of patients who came back to the same angle (+/- 5*) they started with before bracing two years after the brace comes off for good.
I don't think there is any clear evidence Spincor has improved a single curve long term at this point. They may have helped hold curves but we can't really know that without controls.
And just to be clear we also don't know that Spinecor is NOT working as advertised. Until these authors crunch the data in a reasonable fashion, we can't know either way. It's not enough to execute a bracing study. You have to have a good design and know how to present the data if want to make a case.Last edited by Pooka1; 01-23-2009, 12:46 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."
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Originally posted by LindaRacine View PostI suspect that Drs. Rivard and Colliard have little control over weaning time. It seems like I'm constantly hearing from parents who tell me they've been told to wean their kids off the brace. But either the parents, or even the kids themselves, keep the brace on despite the contrary instruction.
There is something vague about the Spinecor papers on this weaning business. I can't tell if it is deliberate or not. It is outrageous that the paper we were discussing did not rigorously define all these terms (e.g., "stable," "weaning point," etc.).
They need to pony up the data on how many patients fail the first weaning test and how many relapse completely to the original curve (or worse) two years after the brace is removed for good. Forget publishing all the weaning crap.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 LindaRacine View PostI suspect it's a typo. It was probably 6.2 months.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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I don’t have much time right now but I just wanted to follow up with some thoughts.
I slept poorly last night. This revelation from the Dickson paper hit me like a ton of bricks.
What does it mean? Besides the fact that <gulp> I was wrong and Sharon was right (with regard to the big picture of what we KNOW about brace efficacy), it means that we really do not KNOW that bracing has a positive affect.
Of course, we don’t KNOW the opposite either. It may indeed have a positive affect. (And no one should be discouraged or cease their current therapy.)
Now, perhaps I should have realized this sooner because Sharon pointed it out. I don’t, (and neither should anyone) believe everything (or anything) I read on forums like these. But the discussions are useful to steer one in the right directions to gain personal understanding.
For me, the revelation enforces my decision to go with the SpineCor. I’m not sure if that makes sense to everyone but I can get into that later.
I disagree with Sharon about the integrity of the researchers (maybe that’s not the right word but the whole “questioning the peer review process” stuff). This Nachemson data (which is “The SRS Bracing Study) was published in the SAME issue as the data indicating that different TYPES of curves have different progression characteristics. These guys did not know this before the study came out. Wow, 10 years wasted. I hope someone has looked into salvaging info from the Nachemson study, but I have not seen that discussed yet in my search.
I now understand why the new BrAIST study can and should proceed. Apologies for my criticism of Dolan (and I will edit my post above).
This is a good example of how science works. Consensus means very little (if anything). I imagine that, if the results of the NEW bracing study reveal bracing to be ineffective it will have consequences to the ortho field similar to what the 1960’s discovery of Plate Tectonics had to the field of geology. It may upset the whole apple cart. Similarly, the field of Climate Science, while boasting of a consensus, needs to ensure that their results are scientific and defensible.
But I digress,
Regarding weaning, Linda – no, I don’t think the 62 months is a typo. Neither do I think it is nefarious Sharon. I expect that it is a language issue. I agree Sharon that the journal reviewers should have caught this and pressed for a definition. Text from the new Coillard paper (2008) says (also in the 2007 Coillard paper): (emphasis added is mine)
“As reported by Montomery and collaborators, a follow up of 2 years is sufficient to foresee progression after weaning from the brace.”
So they clearly understand the issue. What needs to be clarified is if their two year data is indeed “after weaning” or if it includes patients who are still being weaned. I suspect that it does not include patients still being weaned (braced part time), but I can’t say for sure based on what I’ve read.
Originally posted by Pooka1 View PostI want to see the percentages of patients who:
1. needed one weaning period (of 6 months)
2. of those, the percentage who needed two weaning periods
3. of those, the percentage who needed three or more weaning periods.
4. The percentage of patients who came back to the same angle (+/- 5*) they started with before bracing two years after the brace comes off for good.
Comment
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Originally posted by concerned dad View PostI don’t have much time right now but I just wanted to follow up with some thoughts.
I slept poorly last night. This revelation from the Dickson paper hit me like a ton of bricks.
What does it mean? Besides the fact that <gulp> I was wrong and Sharon was right (with regard to the big picture of what we KNOW about brace efficacy), it means that we really do not KNOW that bracing has a positive affect.
Of course, we don’t KNOW the opposite either. It may indeed have a positive affect. (And no one should be discouraged or cease their current therapy.)
(snip)
I disagree with Sharon about the integrity of the researchers (maybe that’s not the right word but the whole “questioning the peer review process” stuff). This Nachemson data (which is “The SRS Bracing Study) was published in the SAME issue as the data indicating that different TYPES of curves have different progression characteristics. These guys did not know this before the study came out. Wow, 10 years wasted. I hope someone has looked into salvaging info from the Nachemson study, but I have not seen that discussed yet in my search.
(snip)
This is a good example of how science works. Consensus means very little (if anything). I imagine that, if the results of the NEW bracing study reveal bracing to be ineffective it will have consequences to the ortho field similar to what the 1960’s discovery of Plate Tectonics had to the field of geology. It may upset the whole apple cart. Similarly, the field of Climate Science, while boasting of a consensus, needs to ensure that their results are scientific and defensible.
But I digress,
Regarding weaning, Linda – no, I don’t think the 62 months is a typo. Neither do I think it is nefarious Sharon. I expect that it is a language issue. I agree Sharon that the journal reviewers should have caught this and pressed for a definition. Text from the new Coillard paper (2008) says (also in the 2007 Coillard paper): (emphasis added is mine)
“As reported by Montomery and collaborators, a follow up of 2 years is sufficient to foresee progression after weaning from the brace.”
So they clearly understand the issue. What needs to be clarified is if their two year data is indeed “after weaning” or if it includes patients who are still being weaned. I suspect that it does not include patients still being weaned (braced part time), but I can’t say for sure based on what I’ve read.
For me, it is too early to jump to conclusions based on the “weaning issue”. But I agree that I would like to see the 4 numbers Sharon asked for above. Most importantly for me, the last one. And this is driven home more by a figure in the linked presentation showing “Weaning Time: 62 months”.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 PostI see us as being on the same side. This is about mutually trying to come to some better understanding through a dialectic in this case.
When is it going to be my turn to play Socrates
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