PDA

View Full Version : Scoliosis Specialists



Nutty
12-15-2008, 12:59 PM
Can anyone here tell me who are
scoliosisspecialists.com?

I ask because they have spammed my blog (I can spot a spam post a mile off), and in the post they have used the above link so basically they have employed someone to write for them on blogs and get links, if anyone here knows them and can tell me if they are legit then I may allow the post, if not I will delete.

The comment on my blog was posted by "anonymous" and that rang alarm bells because why would a legitamate company offering help to people with Scoliosis post anonymously?

Thanks

Simone

LindaRacine
12-16-2008, 12:37 AM
They are chiropractors.

Nutty
12-16-2008, 02:59 AM
Hola

Thanks Linda, however, being a chiropractor doesn't make them bad people, we all have our opinions on chiropractors and mine isn't favourable I have to be honest but that doesn't mean I should shun them because they are.

I have deleted their post as I believe it to be misleading, had they not been anonymous I might have been more considerate.

Anyone here know anything else about them?

Thanks

Simone

mbarnes
12-16-2008, 10:59 AM
My son sees Dr. Oulette in Georgia who is a Chiro. He does the Spinecor which is under the Scoliosis Specialists page I believe. In 3 mos. he has improved 3 deg. I have talked to people in his office from different states and they all have shown improvements. I don't know about anyone else but it s working for us.

Pooka1
12-16-2008, 11:26 AM
Hola

Thanks Linda, however, being a chiropractor doesn't make them bad people, we all have our opinions on chiropractors and mine isn't favourable I have to be honest but that doesn't mean I should shun them because they are.

I haven't seen anyone suggest chiros should be shunned because they are bad people.

The correct reason to shun them is they are not trained to treat scoliosis and have no evidence (in about 100 years) of having successfully halted or decreased a curve outside of measurement error in controlled trials in the long run as far as I know.

Someone correct me if I'm wrong.

There is a reason why chiros are on Quackwatch (Chirobase).

concerned dad
12-16-2008, 05:33 PM
The correct reason to shun them is they are not trained to treat scoliosis and have no evidence (in about 100 years) of having successfully halted or decreased a curve outside of measurement error in controlled trials in the long run as far as I know.

Someone correct me if I'm wrong.

There is a reason why chiros are on Quackwatch (Chirobase).

OK, first post, but I'll jump in here - you invited us to "correct me if I am wrong".
Apparently some Chiro's ARE trained to treat scoliosis. SpineCor trains SOME in the use of their brace. And, in much less than 100 years, their IS evidence of that brace "successfully halting or decreasing a curve" in SOME people.
My daughter will be treated by an orthopedic Dr using the SpineCor, but it could have just as easily turned out to be a Chiro treating her.
But I think you are referring to "traditional" chiropractic techniques as having no evidence in 100years of successfully treating scoliosis.

Pooka1
12-16-2008, 06:03 PM
I certainly hope nobody waits for an invitation to correct statements! Evidence is always in order. :)

In re Spincor halting/correcting curves, I think I specified the long term. I don't think Spincor has been around long enough, nor are there enough controlled studies to my knowledge, to say that Spincor does either of those things as far as I know.

Rather, I think Rivard et al. are presently collecting data, no?

LindaRacine
12-16-2008, 10:34 PM
We also need to wait and see if chiropractors are seeing the same results that Rivard et. al. have seen. My understanding is that early results aren't all that positive.

-Linda

Pooka1
12-17-2008, 09:25 AM
Evidence is presently being gathered on the Spincor brace. We'll see what the future holds on that.

There is no evidence chiro minus a brace works to my knowledge. In over a hundred years.

concerned dad
12-17-2008, 09:36 AM
We also need to wait and see if chiropractors are seeing the same results that Rivard et. al. have seen. My understanding is that early results aren't all that positive.

-Linda

Linda, I would be very interested to hear of any early results regarding Chiropractors and the SpineCor. Is there a specific study you can cite or is the understanding anecdotal? We are going to see Dr. Rivard however I would like to know about any other research out there. It seems logical that a chiropractor would be a valid avenue to offer the brace (If they have been trained and have sufficient experience). I am guessing most people who decide on the SpineCor do so only after an orthopedic Dr diagnoses the scoliosis and recommends bracing.

Pooka1, If by 'controlled studies' you mean SpineCor braced vs non braced (or other brace) then the only paper I've been able to find is a recent paper in Spine (Wong et al May 08). Wong had very poor results w/SpineCor relative to the Boston. However, Rivard published a letter in Spine just 2 weeks ago (Dec 1) basically saying Wong didnt know what he was doing. He finished his letter to the Journal editor by saying "For SpineCor to be applied by insufficiently trained providers is negligent and for these same providers to conducted a study on its efficacy is unethical."
If by 'controlled studies' you mean technical papers published in refereed journals, well then , yes there are a few. I havent been able to find one though that could be called truly independent.
Personally, I like a good scientific debate. I just wish my daughters health wasnt in the balance. Never the less, after researching the info I could find I decided to go see Dr. Rivard for the SpineCor.

And Pooka1, I agree 100% w/what you said about Chiro minus a brace.
And Simone, I agree that Spamming like you experienced rings alarm bells.

Pooka1
12-17-2008, 06:38 PM
Pooka1, If by 'controlled studies' you mean SpineCor braced vs non braced (or other brace) then the only paper I've been able to find is a recent paper in Spine (Wong et al. May 08). Wong had very poor results w/SpineCor relative to the Boston. However, Rivard published a letter in Spine just 2 weeks ago (Dec 1) basically saying Wong didn't know what he was doing. He finished his letter to the Journal editor by saying "For SpineCor to be applied by insufficiently trained providers is negligent and for these same providers to conducted a study on its efficacy is unethical."

Yes this is what I mean by controlled. The lack of a control unbraced group for the first several years of bracing studies has made those studies worthless. For example, because some smaller curves will not progress absent bracing, anyone who was braced and didn't progress was counted as a success in the bracing column. Clearly garbage research that is now recognized as such. As a scientist, I question the peer review on journals who published these uncontrolled studies. It's research 101 that you learn (or better learn) in your first year of grad school.


Personally, I like a good scientific debate. I just wish my daughters health wasn't in the balance. Never the less, after researching the info I could find I decided to go see Dr. Rivard for the SpineCor.

Well I wish you and your daughter luck. Spinecor seems promising.

sharon

concerned dad
12-17-2008, 09:49 PM
...... The lack of a control unbraced group for the first several years of bracing studies has made those studies worthless. ...... Clearly garbage research that is now recognized as such. As a scientist, I question the peer review on journals who published these uncontrolled studies. It's research 101 that you learn (or better learn) in your first year of grad school.
sharon

Sharon, I suggest you google "Declaration of Helsinki" to understand the grave error in your statement above.

This is perhaps the main difference between physical sciences and biological sciences. What you said holds true for the physical sciences. Ethics trumps research 101 when live people are involved. This is why medical research often moves ahead so slowly. This is also why SRS came up with a set of guidelines to use for brace evaluation studies.

Pooka1
12-17-2008, 10:12 PM
Not bracing is certainly not unethical!!! I chose that route for one of my daughters and would have chosen it for the other if she hadn't decided she wanted to give it a go. Choosing to watch and wait is not out to lunch.

Plenty of surgeons/researchers doubt the efficacy of bracing. Until the nighttime brace came out, our surgeon rarely if ever braced nor did the previous surgeon we consulted. These folks still have their medical licenses.

There are any number of cases of failed bracing that requires fusion.

From the NSF page... http://www.scoliosis.org/resources/medicalupdates/adolescentbracing.php

"In 1985, the Scoliosis Research Society (SRS) initiated a study to investigate the effectiveness of bracing as a treatment for scoliosis. Many previous studies of full time bracing showed that braces stop about 80% of curves. All of these studies, however, were "uncontrolled" which means there were no simultaneous groups of untreated, unbraced patients for comparison. Therefore, there was some doubt that brace treatment of scoliosis was effective, and concern that bracing may be no different than "natural history" or what happens when no treatment is undertaken."

Now it goes on to cite some studies that were controlled and did show efficacy of bracing over natural history but yet some orthopods still eschew bracing.

But the point is that NOW folks are indeed doing controlled studies with unbraced groups. And I would certainly hope no uncontrolled study is ever published again. An uncontrolled study is the very definition of garbage science.

concerned dad
12-18-2008, 11:39 AM
First, apologies to Simone for hijacking this thread.

Sharon, I never meant to imply that a parent choosing the option of non bracing was unethical. That is an informed decision that the patient (or parent) makes.

Where we differ though is in the scientific study issues, the value of those studies and the merits of the researchers.

It sounds like you would like to see all brace studies done with randomized trials of braced vs non braced patients. I don’t know how this could be ethically accomplished (I’m not saying it cant be done, I just don’t understand how it can be done). You say that one is ongoing right now, I would like to see the protocol for the study. If you could provide a link or reference I would be very interested to read it.
It seems to me that once a parent decides to not brace a child, that child would not make a good candidate for the unbraced cohort. The decision removes the randomness. Again, I could be wrong, but it seems to me a higher percentage of parents who have children with small curves (or high Risser) would be more likely to choose the non brace option. Wouldn’t this bias the analysis and invalidate the results?

Regarding the value of existing research without unbraced cohorts, I don’t see how you can negate their value. There is information to be gained from them. What is important is to understand the limitations of the results. But, simply because there are limitations does not negate the scientific value.

Finally, my strongest disagreement with your comments relates to the merits of the researchers.


An uncontrolled study is the very definition of garbage science......Yes this is what I mean by controlled. The lack of a control unbraced group for the first several years of bracing studies has made those studies worthless.


“Worthless” and “Garbage science” are pretty strong words. I think you are wrong. They are simply doing the best they can while maintaining ethical standards. I draw your attention again to the Declaration of Helsinki (a set of ethical principles for the medical community regarding human experimentation.) (emphasis added is mine)


32. The benefits, risks, burdens and effectiveness of a new intervention must be tested
against those of the best current proven intervention, except in the following
circumstances:
• The use of placebo, or no treatment, is acceptable in studies where no current
proven intervention exists; or
• Where for compelling and scientifically sound methodological reasons the use of
placebo is necessary to determine the efficacy or safety of an intervention and the
patients who receive placebo or no treatment will not be subject to any risk of
serious or irreversible harm. Extreme care must be taken to avoid abuse of this
option.

I think you are wrong to scorn the previous and current researchers working on studies that lack non-braced cohorts.

Pooka1
12-18-2008, 02:23 PM
1. In re conducting research on scoliosis, apparently three of the best approaches are randomized trials, controlled studies, retrospective studies. For example...

http://www.physicaltherapyonline.org/cgi/content/abstract/85/12/1329

http://www.ncbi.nlm.nih.gov/pubmed/17513954?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

The second one is a 2007 article that uses newer, stricter criteria for selecting patients and crunching data that produces results that are less optimistic about the efficacy of bracing. This points up the very real case that previous bracing studies potentially suffered severe flaws. Last, there was an analysis recently that shows that most of the published results, even in top-shelf journals, are false forvarious reasons.

2. It is unethical to put a kid in a brace without knowing it is better than no action. Before the controlled studies, there was NO evidence that bracing decreased the need for fusion. There would be no way to say that any bracing is better than the natural history. When you consider putting kids in 23 hour a day hard braces, sometimes for years with the attendant issues, you can start to understand why there are several orthopods out there who rarely, if ever brace and are not sued for malpractice. The very fact that these guys are out there and aren't being sued out of existence is independent evidence that the verdict on bracing is STILL out.

3. In re the Helsinki accords you posted,

32. The benefits, risks, burdens and effectiveness of a new intervention must be tested
against those of the best current proven intervention, except in the following

sharon -> The best proven intervention for scoliosis is surgery. But that isn't an option for sub-surgical Cobb angles.

circumstances:
• The use of placebo, or no treatment, is acceptable in studies where no current
proven intervention exists; or

sharon -> The only proven intervention is surgery. That's why an unbraced control group in a bracing study is required and is the only ethical way forward.

• Where for compelling and scientifically sound methodological reasons the use of
placebo is necessary to determine the efficacy or safety of an intervention and the
patients who receive placebo or no treatment will not be subject to any risk of
serious or irreversible harm. Extreme care must be taken to avoid abuse of this
option.

sharon-> There is little evidence that no treatment represents higher risk or harm than bracing.

concerned dad
12-18-2008, 03:09 PM
Thanks for the info. I'll respond afer I've had a chance to look at it more this evening. In the mean time, any chance you could also point me in the direction of the analysis you mentioned below.



Last, there was an analysis recently that shows that most of the published results, even in top-shelf journals, are false forvarious reasons.

Pooka1
12-18-2008, 03:47 PM
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182327

Why Most Published Research Findings Are False
John P. A. Ioannidis
John P. A. Ioannidis is in the Department of Hygiene and Epidemiology, University of Ioannina School of Medicine, Ioannina, Greece, and Institute for Clinical Research and Health Policy Studies, Department of Medicine, Tufts-New England Medical Center, Tufts University School of Medicine, Boston, Massachusetts, United States of America. E-mail: jioannid@cc.uoi.gr

Abstract

Summary

There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias. In this essay, I discuss the implications of these problems for the conduct and interpretation of research.

Nutty
12-18-2008, 04:39 PM
@mbarnes

Thanks for your reply and I am pleased to hear that SpineCor has been making a difference, I have members on my group that are pleased with the results also.

I just had to question the spam I was getting as 3 different people have spammed my blog using their website address.

All the best for the future

Simone :)

Nutty
12-18-2008, 04:44 PM
Hola Everyone

No problem for jumping in or hijacking, I found this all very interesting to read :)

Thanks for replying and I will keep visiting this thread.

Best of luck to all

concerned dad
12-21-2008, 02:03 PM
Sharon, Wow, you certainly gave me a lot to mull over. Thank you for the links. You opened my eyes to even more of the controversy surrounding scoliosis bracing.

I spent much of Saturday reading the 3 papers you linked and continued on to read many of the papers they referenced.

In trying to get a handle on where we differ, I keep coming back to the issue of "garbage science" and "worthless". Clearly I was wrong about the current understanding of the effectiveness of bracing. Perhaps our differences though are a matter of semantics. When I think of garbage science, it conjures thoughts of Creation Science and Dianetics (I hope I am not opening a can of worms here). My point is, I don’t think that we can paint previous bracing research with a broad brush and say it is garbage science. Ionnadiis (the 3rd author you linked) made the following comment in a published correspondence related to his paper; “Scientific investigation is the noblest pursuit. I think we can improve the respect of the public for researchers by showing how difficult success is". The very fact that the first paper you referenced was a meta-analysis of the previous research shows that the previous research has some scientific merit. (The paper you cite on the recent thread is another meta-analysis, and I do have comments on it that I will post there.) A key part of these meta analysis's are the assignment of a quality score to the reviewed works. Part of that score relates to how the study is designed and reported, and that is within the control of the researcher. But, part of the quality score is related to the nature of the data. So, one research paper that, say, is examining the different results between two braces may get a lower score if the wearers of those braces are not randomly assigned. That doesn’t mean his research techniques are poor nor is it a bad reflection of his application of the scientific method. So long as the fact is disclosed, it is valid and helpful to report the study. The "Quality" is a statistical tool for the meta-analysis.
Science is a pursuit of the truth. Those involved with the "pursuit", even though they may not personally find the "truth" deserve our respect.

I made the point above that the lack of unbraced cohorts in previous studies was limited by ethical concerns. I still think that is a true observation. The recent research you cited may remove these ethical concerns for research going forward. I disagree with you when you say there is no evidence that bracing is effective. There is evidence to suggest that bracing is effective. There is also evidence to suggest that it is not effective (and I thank you again for pointing this out to me). What is lacking is strong or conclusive evidence one way or the other.

I now agree with you that a randomized trial is both ethical and called for. (But I disagree that is it the "only" way forward). I was interested to read a paper by Dolan (I think) where she reported on a survey that asked patients (and parents) if they would (if offered) participate in a random trial. Very few would participate. Knowing what I know now, I would not let me daughter be randomly assigned to a braced or unbraced group. I can see making the choice for not bracing but, personally, I would not give the power to make that decision to others (so much for noble scientist in pursuit of the truth).

Finally, I disagree when you say “It is unethical to put a kid in a brace without knowing it is better than no action.” Again, perhaps we are talking semantics here. If you substitute for “unethical” words like “a difficult decision” or “a troubling choice” then I could agree. Many parents here have chosen to brace their child. I don’t think they are unethical because they are not 100% certain it will help.

LindaRacine
12-21-2008, 02:35 PM
Linda, I would be very interested to hear of any early results regarding Chiropractors and the SpineCor. Is

Perhaps you should ask Dr. Rivard whether he thinks chiropractors are getting the same results.

--Linda

Pooka1
12-21-2008, 02:44 PM
Sharon, Wow, you certainly gave me a lot to mull over. Thank you for the links. You opened my eyes to even more of the controversy surrounding scoliosis bracing.

I spent much of Saturday reading the 3 papers you linked and continued on to read many of the papers they referenced.

In trying to get a handle on where we differ, I keep coming back to the issue of "garbage science" and "worthless". Clearly I was wrong about the current understanding of the effectiveness of bracing. Perhaps our differences though are a matter of semantics. When I think of garbage science, it conjures thoughts of Creation Science and Dianetics (I hope I am not opening a can of worms here).

:D

That's only a can of worms to the ignorant and intellectually dishonest. "Creation Science" has been repeatedly adjudicated to be the religion it obviously is which is why it violates the separation of church and state. Now Intelligent Design Creationism has joined that rogue's gallery of nonsense, at least in part of Pennsylvania. Young earth creationism has been dispositively ruled out by myriad lines of scientific evidence for over a hundred years. And Dianetics is clearly a scam to anyone who is even half awake.

In re semantics, no I think it goes much further. I suggest a widely accepted definition of "garbage science" is an uncontrolled study. That was the case for the brace literature before a certain time. There is no getting around that. I discard all those data. Then there is the general problem of most published results likely being being false anyway.

(snip)


Science is a pursuit of the truth. Those involved with the "pursuit", even though they may not personally find the "truth" deserve our respect.

But the problem is that many of the bracing studies are done by the brace inventor who may not have the truth as their only objective or may think truth is their objective but not realize they are letting biases into their analysis. And another problem is the prevalence of folks who claim they are doing science but who are not like all the creationist crowd, most of the chiro crowd, and some of the PT crowd. They either don't understand the scientific method or don't want to understand it.

(snip)


I now agree with you that a randomized trial is both ethical and called for. (But I disagree that is it the "only" way forward). I was interested to read a paper by Dolan (I think) where she reported on a survey that asked patients (and parents) if they would (if offered) participate in a random trial. Very few would participate. Knowing what I know now, I would not let me daughter be randomly assigned to a braced or unbraced group. I can see making the choice for not bracing but, personally, I would not give the power to make that decision to others (so much for noble scientist in pursuit of the truth).

I, also, would not participate in a randomized bracing trial involving a hard brace worn 23 hours a day. There is not enough evidence at this point to think bracing is likely to be efficacious.

In re how to characterize the decision to brace a child, I suggest parents who choose that may be laboring under an incorrect sense of the literature on the efficacy. I think if you ask them, they would tell you bracing works much of the time whereas I don't believe that is at all supported by the literature. At some point I think you have to confront the issue of why many orthopedic types never brace and why they are not sued successfully for malpractice. Isn't that independent proof that the verdict on bracing is out? How do you explain that? How can lay parents possibly trump the knowledge base that results in those guys not bracing kids when their medical license itself is on the line?

Pooka1
12-21-2008, 02:45 PM
Perhaps you should ask Dr. Rivard whether he thinks chiropractors are getting the same results.

--Linda

Why not just query pubmed?

concerned dad
12-21-2008, 02:49 PM
Perhaps you should ask Dr. Rivard whether he thinks chiropractors are getting the same results.

--Linda

excellent idea, I will do that.

LindaRacine
12-21-2008, 02:50 PM
While not randomized (I also wouldn't participate!), there is evidence that bracing works compared to observtion:


http://www.medscape.com/viewarticle/563818

From the Scoliosis Research Society website:


Treatment for Those Detected from Scoliosis Screening

In general, treatment must attempt to alleviate current problems and symptoms, and to ultimately alter long-term natural history. Brace treatment for scoliosis is the most effective primary non-operative method used over the past 40 years. In recent years, refinements have been made in identifying which patients with idiopathic scoliosis may benefit most with this treatment9.

With the information available in the literature today, it is difficult to speak with absolute certainty about the effectiveness of bracing. There are no level I evidence bracing studies currently in the literature. Though nearly all brace studies are level III or level IV evidence studies, many of them represent important and well-organized research and most conclude that brace treatment is effective in diminishing curve progression10-29. The most common parameter used to assess the effectiveness of brace treatment is the amount of curve progression that occurs, usually with success defined by curve progression of <=5 degrees at maturity. The other parameter used to assess the success of brace treatment is the prevention of surgery. A recent evidence-based review of the literature reported a 20 % to 24 % risk of needing surgery despite best efforts at bracing30. The risk of surgery without any brace treatment in the same patient population is currently unknown. This fact alone emphasizes the importance that a level I evidence study could have in clarifying the effectiveness of brace treatment in preventing the need for surgery. Such a study, a five-year multi-center randomized controlled trial of bracing sponsored by the NIH/NIAMS, is currently underway.

And, from the NSF website:


http://www.scoliosis.org/resources/medicalupdates/bracingworks.php

The best proof to me is that these studies were conducted by scoliosis surgeons. If they have any intentional bias, one would think it would be toward bracing not working, as that would be the most fruitful source of new surgical candidates.

--Linda

Pooka1
12-21-2008, 03:00 PM
The best proof to me is that these studies were conducted by scoliosis surgeons. If they have any intentional bias, one would think it would be toward bracing not working, as that would be the most fruitful source of new surgical candidates.

I reject that. The good ones have more work than they can handle. Try scheduling a kid's surgery over a school break or summer... you better do it way ahead of time or you're SOL.

concerned dad
12-21-2008, 03:12 PM
:D

In re semantics, no I think it goes much further. I suggest a widely accepted definition of "garbage science" is an uncontrolled study. That was the case for the brace literature before a certain time. There is no getting around that. I discard all those data. Then there is the general problem of most published results likely being being false anyway.



Many of the studies on Scoliosis braces are retrospective.
Retrospective studies do not have control groups. They are uncontrolled studies.
They are not as valuable as prospective studies however they are not "garbage science".

By your "widely accepted definition" all retrospective studies are "garbage science".
I suggest that it is indeed semantics and that your definition is wrong.

Pooka1
12-21-2008, 03:19 PM
Many of the studies on Scoliosis braces are retrospective.
Retrospective studies do not have control groups. They are uncontrolled studies.
They are not as valuable as prospective studies however they are not "garbage science".

By your "widely accepted definition" all retrospective studies are "garbage science".
I suggest that it is indeed semantics and that your definition is wrong.

I was unclear.

I meant to say all uncontrolled studies are garbage science as far as I know.

One of my doctoral committee advisers, early in his research for his doctorate, did a study, wrote it up, and gave it to his adviser. The adviser thumbed over to the methods section, saw it there weren't adequate experimental controls and tossed it in the garbage can right then and there without reading any further.

That made an impression... that guy when on to be a very famous scientist in his field. And the story alone made a huge impression on me and hopefully improved my own research.

And I'm not clear on whether the retrospective studies don't also have a retrospectively assembled control (natural history) group. If they don't then I discard them also for being uncontrolled.

concerned dad
12-21-2008, 03:36 PM
I was unclear.

I meant to say all uncontrolled studies are garbage science as far as I know.



"as far as I know" OK, I'll accept that.
I would guess that your education/background/experience is in a field of science where controlled studies are the norm.
That is not always the case in the biological sciences. Yes, if a control is possible, there is no excuse for not having one. However, I stated the "excuse" in the case of scoliosis braces (ethics). You opened my eyes that the excuse may not be valid. That doesnt mean that all those who labored believing that a concern for their patients (ethics) whould overide the significance of the scientific method only produced garbage.
as I said before, Ethics trumps research 101 when live people are involved.

Pooka1
12-21-2008, 03:51 PM
(snip)That doesn't mean that all those who labored believing that a concern for their patients (ethics) would overide the significance of the scientific method only produced garbage.
as I said before, Ethics trumps research 101 when live people are involved.

I don't understand why people would do uncontrolled studies and especially why the editors would allow it to be published.

There is a clear sense now that it was wrong to do so then because the new guidelines call for controlled studies, no?

The idea of controlled studies has been around a while including the period when these uncontrolled studies were published. I don't see an excuse here but I'm not a medical researcher... possibly I'm missing something but if so, it hasn't yet been pointed out. If there was some merit to uncontrolled studies, why would the newer studies go to a controlled format?

Still, science is science and orthopods now throw out those early uncontrolled studies. We know they are discarding these data because many of those studies showed high efficacy rates and yet many orthopods still don't brace as I type.

concerned dad
12-21-2008, 08:03 PM
There is a clear sense now that it was wrong to do so then because the new guidelines call for controlled studies, no?

No
The new guidelines do not call for controlled studies.
I just read the paper twice (I assume you mean the 2005 SRS Guidelines on Bracing Studies published in Spine)
The guidelines call for consistent parameters for future studies (inclusion criteria, standardization of reporting outcomes, etc).
The guidelines do not call for all future studies to be prospective (controlled)





possibly I'm missing something but if so, it hasn't yet been pointed out. If there was some merit to uncontrolled studies, why would the newer studies go to a controlled format?


They are not





Still, science is science and orthopods now throw out those early uncontrolled studies. We know they are discarding these data because many of those studies showed high efficacy rates and yet many orthopods still don't brace as I type.

and other orthopods do brace
You say, Some orthopods now throw out the early studies. I dont thnk they are throwing them out. They are looking at the data in totality to make an informed decision. Different orthoods (and parents) come to different conclusions.
I just dont want any other parent reading this to think that the existing research is "Garbage".

Pooka1
12-21-2008, 08:46 PM
I now agree I was irrationally exuberant in my characterization of the bracing literature as "garbage."

I took the lesson that my adviser learned to heart and have never forgotten it. I consider it my great fortune to have heard that story early on in my research career.

I still don't see how anyone thinks an uncontrolled study can yield any meaningful results. Even many controlled studies yield false results.

The verdict on bracing is clearly out. Hopefully it will be in eventually.

Pooka1
12-21-2008, 09:06 PM
No
The new guidelines do not call for controlled studies.
I just read the paper twice (I assume you mean the 2005 SRS Guidelines on Bracing Studies published in Spine)
The guidelines call for consistent parameters for future studies (inclusion criteria, standardization of reporting outcomes, etc).
The guidelines do not call for all future studies to be prospective (controlled)


I just found this abstract.

They are only addressing study criteria, not study design. I assume they are assuming a controlled study that includes those study criteria.

If you can find some guidelines that explicitly say control groups are not necessary, I'd like to see it. I don't think this 2005 paper on study criteria addresses it.

Pooka1
12-21-2008, 09:20 PM
I wrote earlier that (I assume) the best way forward is one or all of the following based on seeing them in the most recent literature:

1. randomized trials,
2. controlled studies, and
3. retrospective studies.

Now as far as I know, ALL of these involve control groups. That is, randomized trials would assign folks to either a braced or watch/wait group. Controlled trials are obviously controlled. And retrospective studies I assume have a retrospectively assembled watch/wait group just as they have a retrospectively assembled brace group.

The last of these have to be very carefully done in my opinion to avoid any unwarranted data selection/exclusion.

Now if any of this is wrong I would appreciate being edified. This is not even close to my field and there is a high chance my conclusions are false. :D

LindaRacine
12-23-2008, 12:56 AM
Hi Pooka...

I'm all for solid science, but when it comes to conditions/illnesses where "control" groups are made up of people who might suffer needlessly, I personally loosen my standards a bit.

If your daughter was dying from an illness, and there was a pill that could almost certainly cure her, but the only published studies were retrospective, or not randomly controlled. Would you want your daughter to get the pill outright, or would you want her to go into a randomized controlled study and potentially be given a placebo?

It would be great to live in a world where all research was solid, and which could be trusted. Until then, I think the best most of us can do is select medical professionals who have a lot of experience, and then trust their judgment.

Regards,
Linda

Pooka1
12-23-2008, 08:42 AM
Hi Pooka...

I'm all for solid science, but when it comes to conditions/illnesses where "control" groups are made up of people who might suffer needlessly, I personally loosen my standards a bit.

Well, if bracing is to be studied then you run the risk those braced kids are going to suffer needlessly. That's the way it works. Bracing at this point is hard to justify when surgery can stabilize most cases and in fact put some kids back in the general population on back issues for the rest of their life. That's a high bar for bracing to jump in my opinion and why I wouldn't choose it at this point. And the bar will get higher and higher as the surgical techniques get better and better. The bracing crowd has their work cut out for them.


If your daughter was dying from an illness, and there was a pill that could almost certainly cure her, but the only published studies were retrospective, or not randomly controlled. Would you want your daughter to get the pill outright, or would you want her to go into a randomized controlled study and potentially be given a placebo?

But how would you know the pill could almost certainly cure the illness without studies? With such stark results, clinical trials are usually halted and the control group is given the pill. That is NOT the case with bracing AT ALL. So that analogy is completely off base here.

There is a big problem in my opinion in this area with folks automatically assuming bracing is the present gold standard for sub-surgical Cobb angles when that conclusion sits on a thrown of questions (to borrow/change the phrase from the movie, "Elf").


It would be great to live in a world where all research was solid, and which could be trusted. Until then, I think the best most of us can do is select medical professionals who have a lot of experience, and then trust their judgment.

You got that right.

sharon

concerned dad
12-23-2008, 09:11 AM
I dont want to put words in Sharons mouth, but I think her point was that some current research suggests that bracing MAY have similar results to not bracing at all. As that may be the case, a controlled study is ethical (and called for). I didnt recognize this at the beginning of the discussion but Sharon convinced me.

Our discussion was about the value and merits of the existing uncontrolled studies.

Sharon is wrong (IMO) about the current guidelines calling for controlled studies, they do not (and I will try to elaborate on this later).

There are very very few controlled studies (where the control is Sharons definition of an unbraced group). The one that seems to be often cited is the study in Ireland where the hospital doesnt brace at all. They compared their results to hospitals that did brace. They concluded that the incidence of surgery was not statistically higher but they also concluded (and you have to read more than the abstract to get this) that their patients (unbraced) had a higher curve at the end of the study when compared to other hospitals that did brace. It is important to note that their measure was number of surgery's, not curve amplitude.

In the paper they discuss some of the problems with their study. The one perhaps most relevant is using number of surgeries as a measure. Orthopods use different criteria for deciding when someone will have surgery. One DR may operate to correct a cosmetic deformity and another may not.

And all of the above and everything I have written on this forum is just my opinion which may very well be incorrect and is always subject to change.

edit - I didnt see Sharons response above before posting.

Pooka1
12-23-2008, 09:22 AM
Concerned Dad has it. :)

(To borrow the phrasing from the I can has cheezbruger site. http://icanhascheezburger.com/tag/nose/)

Pooka1
12-23-2008, 09:25 AM
There are very very few controlled studies (where the control is Sharon's definition of an unbraced group).

I would say it's the general definition for a control group; I certainly didn't invent that. There is a reason that adviser threw that student's study in the garbage can after only looking at one paragraph of the Methods section.

And perhaps we can all agree that lack of controlled studies is precisely the problem and the reason why bracing is still mired in questions?

txmarinemom
12-23-2008, 12:04 PM
... Apparently some Chiro's ARE trained to treat scoliosis. SpineCor trains SOME in the use of their brace. And, in much less than 100 years, their IS evidence of that brace "successfully halting or decreasing a curve" in SOME people. ...

Concerned dad,

I really wouldn't consider a chiro "trained to treat scoliosis" simply because they monitor a kid in Spinecor.

Yes, Spinecor can halt a curve in SOME people (but so can *any* brace, or NO brace, for SOME people). I've yet to see any evidence, however, that chiropractic, Spinecor, or anything short of vertebral stapling, VEPTR or fusion can decrease a curve. Vertebral tethering also shows some potential promise.

BTW, most SRS doctors won't treat with Spinecor ... which probably has something to do with the prevalence of chiros who do.


My daughter will be treated by an orthopedic Dr using the SpineCor ...

It looks like y'all found a rare ortho (out of curiousity, is he SRS?) who will use Spinecor. I do sincerely hope your daughter does well with it.

Please be sure to insist on out of brace x-rays. My largest concern with Spinecor is the false success rate all too frequently shown by strictly in-brace x-rays. Just my opinion, but x-ray protocol should be the same with Spinecor as with other (ortho condoned) braces ... 24-48 hours unbraced before films. It's really the only accurate measure of determining a curve is being held.

Best regards,
Pam

txmarinemom
12-23-2008, 12:25 PM
... But the point is that NOW folks are indeed doing controlled studies with unbraced groups. And I would certainly hope no uncontrolled study is ever published again. An uncontrolled study is the very definition of garbage science.

Yep ... there's a huge, nationwide, CONTROLLED study going on now (Shriners Houston is just one of many participants), and there's an ever-increasing number of orthos who feel bracing, in most cases, is simply to make the *parents* feel ~something~ is being done (and, no ... this isn't true in all cases).

Until more data is available on which curves are likely to progress, a huge piece of the puzzle is missing. Researchers are making progress, however, and I'd like nothing more to see definitive answers in my lifetime! ;-)

Regards,
Pam

emarismom
12-23-2008, 05:24 PM
Just an opinion from a parent, using a Spinecor brace with a chiro.

Even though I opted to go the Spinecor route and do see a chiro every 3-5 months, I continue to see the orthopedic too. There is no way I would ever consider the chiropractor "trained to treat scoliosis", even though he is very knowledgable about what he does, which is fit and adjust a Spinecor brace.
Regular visits to the orthopedic are necessary.

While I am bracing my daughter at this time, I do realize that it may or may not work. It may or may not be controling the curve. Up to this point it is not correcting the curve. I only know this, because my ortho insisted on an out of brace xray after one year in the brace. The curve was stable at that point in the low 20's. In brace right now it is 16 degrees per ortho, 18 degrees per chiropractor.

Up to now there has not been enough reliable, conclusive data to support bracing or not bracing with any type of brace. As parents we have to look at all the information and make the best decision we can at the time. Then be flexible enough to change our minds if the need occurs.

Pam,
Just a note my ortho, who didn't initially support me putting my daughter in a Spinecor, is glad that she is wearing it now and today told me several times to continue with it. I guess that as a year and a half has passed, he has seen no adverse effects from the brace, and she is tolerating it well, this has made him a little more open minded to it. He also has another patient now whose parents have opted for the Spinecor. So while he isn't prescribing it, it is not dismissing it either.

Whether the brace is for "me" to at least feel like I am doing something, or if it is really "helping" my daughter is something I may never have completely answered, but the alternative was 6-8 years of waiting and watching, knowing that if her scoli progressed it could be relentless progression due to the type of scoli she has. Waiting and watching really isn't a viable option either.

christine2
12-23-2008, 05:33 PM
My Ortho is also very impressed and has actually started to be trained to use Spinecor. One of the techs from Montreal was at my daughters last visit here in Ct.

emarismom
12-23-2008, 05:42 PM
Christine,

Has your daughter had an out of brace xray since starting the Spinecor? Those results are amazing!

Pooka1
12-23-2008, 07:25 PM
Waiting and watching really isn't a viable option either.

I agree with you that watching/waiting doesn't seem to be an option for JIS like it is for AIS. The choices are bracing or non-fusion surgery as far as I tell.

I hope the studies looking at these surgical and bracing procedures for JIS yield up some high-quality data as soon as possible.

sharon

Pooka1
12-23-2008, 07:28 PM
Christine,

Has your daughter had an out of brace xray since starting the Spinecor? Those results are amazing!

Someone made a claim a while back on the Spinecor thread I think that is has been determined that all out of brace progressions are always accompanied by in-brace progressions.

I'd like to see the database for that claim but if true, then out of brace radiographs are not needed. It would be more believable if it is at least published though it could still be false.

emarismom
12-23-2008, 08:52 PM
Sharon,

That is exactly what I have been told, that the in brace x-rays should reflect what the curve is doing. While I doubt that there could be any type of progression of a curve when in brace xrays are all getting lower, if after two years of bracing, an out of brace xray is done and the curve is stable or close to its original state, it could be very disheartening.

My ortho has also been insistent that I have an out of brace xray, so I had one 6 months ago and used that with the chiro. This time I had an in brace and used that with the ortho. Next time I get an xray, around late May or June, I will get an out of brace to accomodate the ortho.

concerned dad
12-24-2008, 10:02 AM
But how would you know the pill could almost certainly cure the illness without studies? With such stark results, clinical trials are usually halted and the control group is given the pill.
sharon

you mean like this? Emphasis added at the bottom is mine

INTERIM RESULTS OF A PROSPECTIVE RANDOMISED STUDY OF THE NATURAL
HISTORY OF IDIOPATHIC SCOLIOSIS VERSUS TREATMENT WITH THE SPINECOR
BRACE.
The objective of this prospective randomised study was to compare the natural history of Idiopathic Scoliosis patients to
those treated with a SpineCor brace with a Cobb angle between 15 and 30 degrees. A cohort of 65 patients were
randomly assigned to a control non-treated (n=36; age=12 years; Cobb angle:20±5 degrees) or treated group with the
SpineCor brace (n=29; age=12 years; Cobb angle : 22±5 degrees). Inclusion criteria included an initial Cobb angle
between 15 and 30 degrees, Risser 0, 1 or 2, high risk of progression (increase of Cobb angle of 5 degrees or more within
the last 6 months), girl or boy and no significant malformation of the spine. Each patient underwent a comprehensive
evaluation (radiological and clinical) prior to commencing the study, at 4 month intervals during treatment and follow-up.
From both groups there were 3 patients who withdrew. For the remaining 33 control subjects there was a mean Cobb
angle of 26±8 degrees and for the treated group, 20 are still in treatment with a mean Cobb angle in brace of 15±7
degrees. The remaining 6 patients, in the treated group, have been weaned from the brace but for less than 1 year.
Table 7 : Percentage of patients improved, stable and worsened at the last available visit.

..................Improved.......Stable.......Wors ened
Control (n=33) 12.............45...............42
Treated (n=20) 76.............14................5

This is the first prospective randomised study on Scoliosis patients investigating the Cobb angle between 15 and
30 degrees. This interim evaluation reveals a strong tendency where 42 percent of the control group worsen,
compared to the treated group who showed a worsening of only 5 percent. This interim result which shows this large
difference in worsening between treated and non-treated patients questions the logic of continuing this prospective
randomised study.

Pooka1
12-24-2008, 11:34 AM
That looks promising but always think about possible flaws in study design. Can you post the source?

Where is this published? Who is doing the study? How long has the study be going on?

The main question I have is are braced angles which show improvement or stability in-brace? I mean of course the curve will be less in a brace. Am I missing something? I realize we have claims that all out of brace progression is always accompanied by an in-brace progression but I don't think that has been shown, rigorously or otherwise.

The main problem I see is why is the treated group at this point so much smaller than the control group? Each group lost three but then another 6 are unaccounted for in the treated group. What happened to them and what is their Cobb angle at the end of the bracing and at the end of the weaning? I can't think of a good scientific reason not to include those subjects in the brace stats. If they had been included, might the results be different? With this small a study, it seems likely those six (about a 1/3 of the present number and about 1/4 of the real total if they didn't go missing) can skew the results towards something else. The lack of inclusion of these 6 subjects is consistent with my conjecture that the bracing stats are in-brace because then it would be apples and oranges to include the weaned patients with the in-brace patients.

If it's in-brace then the study is very limited until we know the course of patients after bracing.

Also, the average of the control subjects is thought to be a stable angle as far as I know. So no treatment is looking pretty good (more than half the subjects).

I also want to know the distribution of angles in each group and if there was any data selection prior to inclusion. That is, although subjects were assigned randomly, I wonder if the angles ended up being randomly distributed between the groups. I want to know how the randomization was done.

I also wonder why the groups didn't start out as the same size or closer than they were. There is some non-randomness being introduced somewhere.

On the whole, I see opportunity for data selection at a few points which is going to compromise the results if true.

concerned dad
12-24-2008, 12:47 PM
That looks promising but always think about possible flaws in study design. Can you post the source?

Where is this published? Who is doing the study? How long has the study be going on?



I found it buried in the SRS.org website in the professional section.

All your points and questions are valid. It doesnt look like this has been published, it is preliminary (although I dont speak french).

I just wanted to share it as a possible example of a random controlled study on scoliosis bracing that was apparently stopped due to ethical concerns.

You got me interested in looking what we do know about controlled studies.
here is another one. PubMed truncates the abstract at 250 words. That's too bad because the most important conclusion from this "randomized" (I use quotes because it isnt truly randomized) is at the end. Again, emphasis added is mine. This isnt found in its' entirety at Pubmed, i got it from a french website.

Titre du document / Document title
Effectiveness of TLSO bracing in the conservative treatment of idiopathic scoliosis
Auteur(s) / Author(s)
FERNANDEZ-FILIBERTI R. ; FLYNN J. ; RAMIREZ N. ; TRAUTMANN M. ; ALEGRIA M. ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
Univ. Puerto Rico, hosp. Puerto Rico, dep. orthopedic surgery, San Juan Puerto 00936-5067, ETATS-UNIS

Résumé / Abstract
A clear understanding of the effectiveness of the thoracolumbosacral orthosis (TLSO) as a conservative treatment for idiopathic scoliosis is still necessary. In the past few years, the review of pertinent literature has emphasized the lack of properly matched control studies and erroneous interpretations of results due to the use of univariate analysis. Also, in a previous controlled study evaluating the bracing of idiopathic scoliosis, the researchers mixed different types of braces and patients. Therefore, their findings were not specific to any kind of orthosis. In our study, we responded to these criticisms by providing a homogeneous group of patients with a control group and by conducting a multivariate analysis to assess the effectiveness of the TLSO. All the patients at the University Pediatric Hospital Scoliosis Clinic aged 8 through 15 with initial Cobb's angle between 20 and 40° and evidence of progression were assessed. All the patients who used the TLSO and showed full compliance with treatment (n = 54) were compared with a control group. The control group consisted of the patients who needed the treatment with the brace but did not use it for several reasons (n = 47). Neither group showed significant differences in sex, initial age, initial Cobb's angle, menarche, Risser sign, or curve pattern. The mean follow-up period was 3.3 years after skeletal maturity. The results were analyzed using a multivariate analysis because the natural history of scoliosis is determined by multiple factors. The analysis showed that the control group had a threefold increase in the odds of ending with surgery compared to the treatment group (OR = 3.24, 95% CI, 1.09-9.60). The curve was more likely to progress >40° in the control group (OR = 2,83, 95% CI, 0.98-8.17)

concerned dad
12-24-2008, 01:14 PM
and it is a good thing Nutty is a good sport because we totally hijacked this thread.

Pooka1
12-24-2008, 06:09 PM
Titre du document / Document title
Effectiveness of TLSO bracing in the conservative treatment of idiopathic scoliosis
Auteur(s) / Author(s)
FERNANDEZ-FILIBERTI R. ; FLYNN J. ; RAMIREZ N. ; TRAUTMANN M. ; ALEGRIA M. ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
Univ. Puerto Rico, hosp. Puerto Rico, dep. orthopedic surgery, San Juan Puerto 00936-5067, ETATS-UNIS

Résumé / Abstract
A clear understanding of the effectiveness of the thoracolumbosacral orthosis (TLSO) as a conservative treatment for idiopathic scoliosis is still necessary. In the past few years, the review of pertinent literature has emphasized the lack of properly matched control studies and erroneous interpretations of results due to the use of univariate analysis. Also, in a previous controlled study evaluating the bracing of idiopathic scoliosis, the researchers mixed different types of braces and patients. Therefore, their findings were not specific to any kind of orthosis. In our study, we responded to these criticisms by providing a homogeneous group of patients with a control group and by conducting a multivariate analysis to assess the effectiveness of the TLSO. All the patients at the University Pediatric Hospital Scoliosis Clinic aged 8 through 15 with initial Cobb's angle between 20 and 40° and evidence of progression were assessed. All the patients who used the TLSO and showed full compliance with treatment (n = 54) were compared with a control group. The control group consisted of the patients who needed the treatment with the brace but did not use it for several reasons (n = 47). Neither group showed significant differences in sex, initial age, initial Cobb's angle, menarche, Risser sign, or curve pattern. The mean follow-up period was 3.3 years after skeletal maturity. The results were analyzed using a multivariate analysis because the natural history of scoliosis is determined by multiple factors. The analysis showed that the control group had a threefold increase in the odds of ending with surgery compared to the treatment group (OR = 3.24, 95% CI, 1.09-9.60). The curve was more likely to progress >40° in the control group (OR = 2,83, 95% CI, 0.98-8.17)

Thanks for posting this. What is the year?

I realize it is just an abstract but there are far more troubling aspects in this study than in the previous one. Taking a criteria of being having actually had surgery is obviously problematic. There are people here with double curves over 60* who don't have surgery and some who have a single 50* angle who have surgery. Surgery is a nonsense criteria in scoliosis studies in my opinion.

Also, the likelihood of progression to >40* is going to be controlled largely by the angle at the beginning of study, not any bracing or not bracing. Your point about this not being a true randomized study comes into play here. I would want to see the actual distribution of angles in each group when the group is this small. Unless the groups are large, this matters.

concerned dad
12-24-2008, 08:24 PM
Sharon, earlier we discussed:
Quote:
Originally Posted by concerned dad
There are very very few controlled studies (where the control is Sharon's definition of an unbraced group).


I would say it's the general definition for a control group;

You are correct, it would make sense that an unbraced group would be a control group, This Fernandez paper shows in part what I was trying to say. There was a control group here, but it was made up of people who refused treatment. Obvious potential problems w/that (although they say the two groups were similar in many characteristics) Another paper used as their "control" (and got "points" in the meta analysis for being randomized) two groups of patients who were randomly assigned two different braces. I know thats not what you mean when you call for a randomized controlled trial.

There is very little information out there about unbraced scoliosis progression.

This Fernandez paper was from 1995. I cant get the full text online unfortunately, my online access to that journal is only available after 1996.

But there is something else I want to share with you and solicit your opinion on. The meta analysis paper we discussed had a real interesting comment in the discussion about what happens to their results if they exclude just ONE study (I think the Ireland study). It's pretty interesting, but will have to wait till tomorrow.

Pooka1
12-24-2008, 08:35 PM
I'm coming to realize you are correct about very little data for natural history. These unbraced folks are out there... I don't know why someone doesn't capture those data.

I have read recently at least one study with a control group of over 70 people. That's getting to be real numbers but still should be much, much larger.

Happy Holidays to everyone. Here's hoping the next year brings forth oodles of dispositive research studies!

FixScoliosis
12-25-2008, 06:49 AM
sorry for jumping in like this.

here is an abstract of a article that might be of intrest in the discussion of bracing

Surgical rates after observation and bracing for adolescent idiopathic scoliosis: an evidence-based review. (http://www.ncbi.nlm.nih.gov/pubmed/17728687?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

Dolan LA, Weinstein SL.
Spine. 2007 Sep 1;32(19 Suppl):S91-S100. Review.


CONCLUSION.: Comparing the pooled rates for these two interventions shows no clear advantage of either approach. Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. This recommendation carries a grade of D, indicating that the use of bracing relative to observation is supported by "troublingly inconsistent or inconclusive studies of any level." The decision to brace for AIS is often difficult for clinicians and families. An evidence-based estimate of the risk of surgery will provide additional information to use as they weigh the costs and benefits of bracing.

Pooka1
12-25-2008, 08:46 AM
Hey FixScoliosis, you are welcome to jump in anytime in any thread in my book. You are data- and evidence-driven. That is not so common.

Thanks for posting that. I think that has been posted upthread.

The only proven treatment modality as far as I know is fusion surgery. Some of the other non-fusion surgical techniques are gathering data and look promising.

concerned dad
12-26-2008, 09:53 AM
The paper that fixscoliosis referenced is the one I wanted to discuss with Sharon.
I thought it best to post my comments on the

other thread (http://www.scoliosis.org/forum/showthread.php?t=8153)

txmarinemom
12-28-2008, 07:31 AM
10/08 1 degree!!! or as Dr Rivard said "it might as well be 0"

Christine, I have to ask, why are you - and Rivard - even bracing a child with a 1° curve?

christine2
12-28-2008, 11:24 AM
Because she is only 8 yrs old. The Spinecor reduced her curve and we (her father & I) have chosen to keep her in brace thru her growth spurt. We could prob. take her out for a few years. But because it is so easy to wear & It has had no emotional effects on her, we are going to play it safe. We have given my daughter more flexability but she wants to still wear it full time.

concerned dad
12-29-2008, 09:00 AM
......but she wants to still wear it full time.

Wow!
correcting from 33 degrees to 1 degree with a brace a child not only tolerates but prefers to wear. What a success story. I know each child is different but that is very inspiring.
Is it fair to say that this would not have happened w/o a brace?
Is it also fair to say that this correction would not have happened with a different brace?

I am guessing you're not out of the woods yet as she still has several years to go before her major growth spurt. But I bet you feel pretty good about the decisions you've made along the way.
May all our children be as fortunate.

Pooka1
01-03-2009, 10:18 AM
My daughter has absolutely no negative feelings (at this time) toward her brace. In fact when I wash it she is bugging me to put it back on. Last week a snap broke, we were out of x tras so she had to sleep without it she was literally in tears over it.

My daughter is in a hard bending brace at night (Charleston) and is uncomfortable physically without it because it probably feels good to counterbend the curve. She isn't uncomfortable emotionally over not wearing the brace because there is no rational reason to be so.

If your daughter is physically uncomfortable without the brace then maybe it is providing support in lieu of her muscles and similar to a hard brace (despite the claims of Spinecor otherwise). Not sure what other explanation there could be for that.

If your daughter is emotionally uncomfortable because of a fear of what will happen if she doesn't wear the brace then that's a large burden for such a young child in my opinion. That fear is not supported by any evidence I have seen.

Pooka1
01-03-2009, 10:37 AM
Okay so then are you saying she is physically uncomfortable without the brace? What does that mean if so?

mariaf
01-05-2009, 09:02 PM
Not looking to jump into the fray here at all, I am just confused as well as to why a 1 degree curve would be braced. It goes against everything I have ever been told or read or understood about scoliosis. I know several people (adults now) who have had curves of, say, 5 or 10 degrees and they were never braced.

If we braced everyone with a 1 degree curve and above, then nearly the entire population would be braced.

While I understand the difference being that the child in question once had a 30+ degree curve (which would be different than finding a new 1 degree curve), bracing at this stage still seems like overkill to me. I'm NOT criticizing here - just VERY confused. I tend to like to "understand" things and this one truly puzzles me.

My son was initially diagnosed in 2000 - and in the past 8 or 9 years EVERY ortho I have ever spoken to, or read a quote from, has said that if they could get a child's curve down under 10 or 15 (some even said 20) degrees, then they would stop bracing at that point (I assume because statistics show that when a curve is reduced that low, it is much less likely to progress). I know that, for example, following VBS if a curve is brought below 20 degrees there is much less chance of it going back up according to Dr. Betz.

I hope nobody is offended by my wanting to understand the doctor's reasoning here with regard to continued bracing of a curve that has basically disappeared. That's how we learn.

Pooka1
01-05-2009, 09:17 PM
I suspect the doctors have some reason if they continue the bracing with no curve remaining.

I wonder if the doctors have ever take kids with dramatic in-brace curve reductions out of the brace for a week or a month and then see what happens. Not saying to do this during a growth spurt but just to see how long the correction out of brace holds before and after a growth spurt.

I mean I wonder what the doctors would say about this. Is the claim now that these children have no scoliosis but only had scoliosis or have a tendency towards scoliosis? I'd just like to know how far they would go in their claims about this.

Hard bracing is said to, at best, prevent a curve from worsening. What is the case with Spinecor? Is there any evidence to date in hand that Spinecor can actually permanently reduce a curve? Is there any evidence that Spinecor holds the curve such that growth corrects the curve like has been seen with VBS?

If so, I think it is the first brace to ever accomplish that. It would be huge. To date, only surgery, fusion and non-fusion, can reduce a curve permanently as far as I know. Someone correct me if I'm wrong.

mariaf
01-05-2009, 10:00 PM
To date, only surgery, fusion and non-fusion, can reduce a curve permanently as far as I know. Someone correct me if I'm wrong.

I would agree that, to my knowledge at least, this is correct.

Pooka1
01-06-2009, 01:30 PM
I just wonder what the present claims are for Spinecor and JIS. It would be interesting if Colliard and Rivard would say what they are.

Are they saying that Spinecor can straighten a curve permanently, perhaps if the child wears it through the growth spurts until skeletal maturity?

Or are they saying that the brace will prevent it from worsening but that the curve can never be decreased from the largest Cobb angle measured prior to bracing?

Do they have JIS patients yet who were braced through growth spurts and have reached skeletal maturity and have a stable Cobb angle less than the highest measured at any point?

If they do, it will be huge.

mariaf
01-06-2009, 01:37 PM
Yes, it would be huge. I would be especially interested, as I'm sure everyone (parents, patients and doctors) would, as to HOW the brace can "permanently correct" a curve. I'm not saying it does or it doesn't - but as you mentioned, Sharon, if in fact it CAN do this, then that information should be shared/published so that others can benefit from it. Up until now, the only proven way to correct a curve permanently has been surgically. So, I would think if someone discovered a non-surgical way to do this, it would be BIG news.

Pooka1
01-06-2009, 01:47 PM
It's certainly possible that Spinecor is new enough that they have no JIS patients who have been braced through growth spurts and have reached maturity with a stable Cobb angle less than any maximum in the past.

In re mechanism of permanently reducing a curve, I'm guessing it could be the same as VBS. That is, the spine is held by the brace strongly enough in a position that disallows growth that adds to curvature and allows growth that corrects the curvature.

While that's possible, then I have to wonder why the hard braces, especially the bending kind, don't work far better at decreasing curves.

In re muscle atrophy and bracing, all braces, if they are doing anything, do some of the work that certain muscles do.