Does bracing work? style and success to date

[Bigbluefrog]

Please share your success with the brace you chose.:D

If the brace was not successful for your child please share it too.

I think as a parent we need to know the good, the bad and the ugly.
I want to believe a brace will work and I am playing with borrowed time, would you be so kind to share your experiences.

Thank you in advance.

I would love to see this poll, :D
remember: YSMV Your Scoliosis May Vary

[Pooka1]

My one kid wore a Charleston for about a year. The curve was stable for the 6 months before the brace, then moved 8* during the first 6 months in brace of nightly wear... she was very responsible about it.

She stopped wearing it when it stopped fitting. I suspect the curve again moved in brace and it was too uncomfortable.

My other kid never wore a brace. One was never prescribed even though she was 29* when diagnosed. I am VERY grateful she never wore a brace with what I know now and am a little perturbed my other kid wore a brace AND needed surgery. But she felt it was worth a try so that's good enough for me.

One caveat... there is some small indication kids with certain connective tissue disorders have a very low success rate with bracing. I think my kids are in this group. I think the evidence case for bracing in straight AIS would be cleared up and might look a little better if they accurately identified the connective tissue disorder group and didn't lump them in.

[Pooka1]

Oh and I think if they ever nail the compliance issue, the case for bracing would look a little better. It is likely the poor results to date are at least partially explained by lack of compliance but someone has to show that.

When you toss the uncontrolled bracing studies you are only left with a literal handful and most if not all of those have known problems (i.e., inadvertent stacking of T curves with higher propensity to progress in observation groups, etc.).

It is a curious thing that bracing is the standard of care despite no high quality evidence. Because it isn't a benign treatment, because compliance is often not perfect for good reason, a controlled study that included compliance monitoring was not only required but is obviously ethical.

[mamandcrm]

My 8 year old daughter has been wearing a Rigo-Cheneau brace full-time since December (she was 7 then). Her curve in December was 35*. In May, at an out of brace x-ray it was 28*. In September at an out of brace x-ray, it was 14*. All out of brace x-rays were taken with 30+ hours out of brace. All measurements have been taken by the same orthopedic surgeon.

We consider her bracing to be a huge success thus far. She will remain in the brace full-time until early April, then if all still looks good (or better), we will reduce the brace time (hopefully to night-time only) and see how things go.

She has been comfortable in the brace, wears it 23/7, does not complain about it, wears it for most of her sports (save swimming and tennis). Few physical problems, all readily resolved.

Good luck with your research.

[AILEA]

My daughter wore a Cheneau brace for 5 years, since she was 13 until last month. Her lumbar curve was 38ª, now is 25º out of brace,
She is 18 years old now, and Risser 5.

I must say that she didn´t wore the brace as much as she should, because it was been a big deal for her. That’s why we tried Spinecor for some months, but it was doing nothing for her.

Would the curve´ve been reduced by herself without brace? I don’t think so.
Will the curve increase in the future? I don’t Know. Who knows??
But I will try bracing again if i had to make the decision now.

[Ballet Mom]

84535Oh and I think if they ever nail the compliance issue, the case for bracing would look a little better. [/B] It is likely the poor results to date are at least partially explained by lack of compliance but someone has to show that.

When you toss the uncontrolled bracing studies you are only left with a literal handful and most if not all of those have known problems (i.e., inadvertent stacking of T curves with higher propensity to progress in observation groups, etc.).

It is a curious thing that bracing is the standard of care despite no high quality evidence. Because it isn't a benign treatment, because compliance is often not perfect for good reason, a controlled study that included compliance monitoring was not only required but is obviously ethical.


Ahhhh, but you see, you don't need to have the Braist trial with kids not being braced to determine compliance rates. You just need a sensor in all the braces in all the bracing studies and you would quickly figure out if compliance is the problem...and no ethical question at all.

[CHRIS WBS]

I work with a 50-year-old attorney who wore a Milwaukee brace 23 hours a day from grades 7 to 12. During that time her curves were reduced to roughly 25 degrees. She has maintained that throughout adulthood and three pregnancies; and she shows no outward signs of scoliosis. She said it looks like her younger sister on the other hand is headed for surgery. She added she was the one kid in the family who did everything she was told while her sister was non-compliant.

[Pooka1]

Ahhhh, but you see, you don't need to have the Braist trial with kids not being braced to determine compliance rates. You just need a sensor in all the braces in all the bracing studies and you would quickly figure out if compliance is the problem...and no ethical question at all.

The lack of controls in the bulk of studies to date is arguably a far larger problem than compliance though both are an issue. You can't in prionciple interpret an uncontrolled study whereas you can correct data for compliance.

See the SRS statement about lack of controls resulting in the bracing literature essentially being worthless. You still seem to be struggling with why controls are needed... if you don't get that, you won't understand the SRS statement.

BRAIST is the first RCT that uses controls and is therefore the only ethical study in my opinion where you don't have so many kids wearing a brace in an uninterpretable study. Sure some kids will wear a brace in BRAIST and still require surgery or never would have progressed just with observation. But at least they did that within a controlled study that hopefully will yield some robust answers.

[Pooka1]

I work with a 50-year-old attorney who wore a Milwaukee brace 23 hours a day from grades 7 to 12. During that time her curves were reduced to roughly 25 degrees. She has maintained that throughout adulthood and three pregnancies; and she shows no outward signs of scoliosis. She said it looks like her younger sister on the other hand is headed for surgery. She added she was the one kid in the family who did everything she was told while her sister was non-compliant.

What did the curves start out at?

Are you saying she came out of the brace at 25* and that has never increased even to what it was prior to bracing? How often has she had radiographs since? How recently?

I wasn't aware there was evidence bracing would permanently reduce curves. If she can document this, maybe someone should write this up as a case study.

I'll also not we have a few folks here who wore Milwaukees and were compliant who still needed surgery. It's a moving target and we should never imply noncompliance ever results in surgery. Just can't know that.

[Ballet Mom]

You still seem to be struggling with why controls are needed... if you don't get that, you won't understand the SRS statement.



I'm not struggling with it at all, I can see why scientists want to do things that are unethical....look at all the information the scientists in the communist countries and Nazi Germany were able to obtain that scientists in the west wouldn't be able to obtain. I have a problem with knowing that bracing can work on many kids and not giving them the brace to give them a chance to avoid an increased curve and potential surgery.

I guess you disagree with the head of the orthopedics department at a major hospital who prescribed my daughter's Charleston Bending Brace and told me that he would have his daughter wear one if she had scoliosis. Apparently you are much wiser and more knowledgeable than him....and the other surgeons who declined to be involved with the Braist study.

[Pooka1]

I can see why scientists want to do things that are unethical....

Referring the BRAIST researchers as unethical is a litmus test for folks who do not understand the limitations of the bracing literature. There is a one-to-one correlation.

The unethical act is doing an umpteenth study with kids in braces where you have a pretty good idea many if not most don't need it and(or) will go on to need surgery anyway and where you can't tell after the study if bracing did a damn thing over and above observation.

SRS pointed out the lack of knowledge generated by these uncontrolled studies several years ago but it went unheeded EXCEPT for the BRAIST Study. Maybe the SRS should issue a more strongly worded statement to stop uncontrolled studies for the sake of these kids.

[tonibunny]

I don't know how useful this information is, but it's interesting. This is my curve progression since I was first diagnosed as a 6 month old baby in 1976.

I was immediately put into a Minerva plaster cast, and then a couple of years later I started to have EDF casts - exactly the same sort that are used for serial casting today, but I was too old for them to be able to provide any correction. I also wore Milwaukee braces from the age of about 3 - I'd tend to wear the casts in the winter and braces in the summer, possibly because of the heat. Starting out with this size of idiopathic curvature as a baby, I am convinced that without the braces and casts my curves would not have stayed in place as long as they did.

1976 1st July: Upper Curve 62, Lower Curve 32

1977 26th Aug: Upper Curve 62, Lower Curve 45

1978 16th May: Upper Curve 63, Lower Curve ?

1979 29th Jan: Upper Curve 63, Lower Curve 55

1981 Jan 15th: Upper Curve 62, Lower Curve 55
Not seen for a year.
Would need fusion at age of 9 or 10.

1983 Feb 14th: Upper Curve 62, Lower Curve 53

1983 Nov 11th: Upper Curve 64, Lower Curve 50
Shows deterioration

1984 Mar 30th: Upper Curve 61, Lower Curve 55
Curves deteriorating
Will need surgery sooner rather than later

1985 Oct 18th: Upper Curve 70, Lower Curve 59
Clearly needs surgery
I had my first set of operations at the RNOH in Stanmore in January 1986. I had a discetomy and anterior release on the 13th of Jan, followed by two weeks in halo-tibial traction, and then a Harrington Rod insertion and fusion from T1 - T12 on the 28th January. When I woke up, the first thing I heard was a nurse telling her colleague that "that space shuttle has just blown up" - it was the day of the Challenger disaster.

My curves were 75 degrees (thoracic) and 55 degrees (lumbar) immediately before this surgery, and 35 degrees (thoracic) and 41 degrees (lumbar) afterwards.

Following this surgery I wore a cast for 6 months to protect the fusion, and then a TLSO brace for another 6 months, but did not wear a brace at all after that; I was simply monitored to keep an eye on the lumbar curve. My upper curve settled down at around 45 degrees.

1987 Aug 21st: Upper Curve 45, Lower Curve 38
Rib prominence reduced to 20 degrees

1988 Feb 19th: Upper Curve 46, Lower Curve 40
Rib prominence now at 27 degrees

1990 Feb 21st: Upper Curve 45, Lower Curve 46

1992 Jan 10th: Upper Curve 45, Lower Curve 58
Rib prominence 29 degrees

I had my lumbar curve fused in 1994, and it went up to 70 degrees by the time of that surgery. That lumbar curve, which had mainly stayed put with bracing before I was ten, progressed during my adolescence when I wasn't wearing a brace.

Obviously nothing can be proven with this information but it is interesting I think :) Based on this, and despite having worn a Milwaukee and casts for the first ten years of my life, if I had a child with scoliosis I wouldn't hesitate to brace them.

[Pooka1]

Tonibunny!

Thanks for typing all that out. I think it is a very valuable post now and will continue to be so in the future.

I see I should have been careful to confine my remarks to the AIS bracing literature. I believe the SRS statement citing the lack of controlled studies that results in a miasma of a literature is for AIS.

I really have no idea about bracing/casting efficacy in the IIS and JIS crowd other than Spinecor (of all things!) appears to be promising for the JIS crowd (as opposed to the AIS crowd).

Thanks again for posting that.

Do you have an opinion about whether you would brace an AIS kid given the state of the literature?

[tonibunny]

Hi Sharon :)

It's very difficult for me to say whether I would brace a teenager. I know that wearing braces is absolutely hellish for teens, because they are so body conscious. I grew up used to wearing the Milwaukee so I didn't know any different; even though braces such as the TLSO and Spinecor are so much more comfy and can be hidden by clothes, I have seen how terribly difficult it is for teenagers who have hitherto grown up as "normal" kids to suddenly be faced with wearing a brace.

I think it would depend on the kid's attitude, and the size of their curve to begin with. Curves bigger than 40 degrees are most likely going to need surgery anyway. I do wonder if this is why my lumbar curve was left unbraced following my surgery when I was 10! I wore the Milwaukee due to having a very high thoracic curve, but a TLSO would have been fine for my lumbar curve. I think it was probably suggested at one point, because I remember my mother telling me that after the operation I could look forward to having just a little brace that sat around my hips.....then, when they brought me a great big post-op TLSO which came right up to my shoulders, I had a screaming fit and the nurses had to shut me in the treatment room to calm down :D I had been so looking forward to that little brace! I hated it so much they stuck me in another plaster cast for 6 months instead, and after that I was happy to have a TLSO for a further 6 months before becoming brace free for the first time in my life.

[Pooka1]

Hi Sharon :)

It's very difficult for me to say whether I would brace a teenager. I know that wearing braces is absolutely hellish for teens, because they are so body conscious. I grew up used to wearing the Milwaukee so I didn't know any different; even though braces such as the TLSO and Spinecor are so much more comfy and can be hidden by clothes, I have seen how terribly difficult it is for teenagers who have hitherto grown up as "normal" kids to suddenly be faced with wearing a brace.

Well those are very valid concerns also but I was specifically asking about the ethics of bracing in the face of the literature on bracing which is arguably a miasma wrapped in a train wreck due to the researchers' hands being tied. The bracing literature could be Exhibit A in explaining why most published research results are false.


I think it would depend on the kid's attitude, and the size of their curve to begin with. Curves bigger than 40 degrees are most likely going to need surgery anyway. I do wonder if this is why my lumbar curve was left unbraced following my surgery when I was 10! I wore the Milwaukee due to having a very high thoracic curve, but a TLSO would have been fine for my lumbar curve. I think it was probably suggested at one point, because I remember my mother telling me that after the operation I could look forward to having just a little brace that sat around my hips.....then, when they brought me a great big post-op TLSO which came right up to my shoulders, I had a screaming fit and the nurses had to shut me in the treatment room to calm down :D I had been so looking forward to that little brace!

Oh my gosh you poor thing! Oh my gosh. I am so sorry that happened to you. Life is so unfair. Bracing stories make me so depressed.

Those experiences obviously didn't adversely affect you because you are a treasure to this group and SSO in my opinion. Best of all, you gave me my great signature. :)

I just has one question... it appears you had double major curves but they only fused your top curve. Do you know why not the bottom also?

And you were fused at nine. Did you have any crankshafting? Did that contribute to the lumbar curve issue?

[tonibunny]

Bless you, thank you for your kind comment :)

I think the current bracing literature is all over the place, and it's not an area I have taken time to study properly, so I really don't feel qualified to comment on it. If I had a child with scoliosis I would go through everything thoroughly, but I'd also make sure they were treated by the very best consultant in the country (which I believe to be my own current consultant) and I'd trust his judgement regarding their particular case.

My childhood was fine really, that screaming fit was just five minutes of angst because I didn't have the maturity to tell the nurse why I was so upset when they produced the brace! Had I been older, I might have explained what my mother had said. This is probably the only time I ever kicked up a fuss or got upset because of a brace. (ETA: oh, it really hurt too. They had put a pad right in the middle of the back that pressed on the bottom of my new rod, and I had to try to hyperextend away from it to stop it from hurting. I didn't have the resources to explain that either).


My lumbar curve was left unfused to allow me to grow some more, as I was only ten. My fusion ended up running from T1-L3, so if they had fused the lot when I was ten it would have restricted a great deal of growth.

As for crankshaft - I'm amazed that this is ever a problem these days. It was a known issue back in the 1970s! Crankshaft is only a problem when the spine has been fused along one side and the growth plates are still intact. I had an anterior release, discectomies and fusion done as well as the posterior fusion in order to prevent this. My thoracic spine is one solid chunk of bone, my surgeon made sure it wasn't going anywhere :D

Despite that, my rib hump continued to progress. I read somewhere a long time ago that this can happen in cases of IIS and JIS post-fusion, and I personally know of other cases where it has happened. I had one costoplasty at the same time as my lumbar fusion, but the rib hump STILL progressed and I had a second costoplasty when I was 25. I'm actually really shocked at the measurement of my rib rotation - 29 degrees before the first costoplasty - the Scoliometer only goes up to 30! It now measures about 15 degrees.

ETA Bigbluefrog, my apologies for taking your thread off topic slightly. Hopefully the data I provided is interesting to you though :)

[concerned dad]

SRS pointed out the lack of knowledge generated by these uncontrolled studies several years ago but it went unheeded EXCEPT for the BRAIST Study. Maybe the SRS should issue a more strongly worded statement to stop uncontrolled studies for the sake of these kids.

What are you referring to here? I am not aware of any SRS statement on the issue.
The only thing I can recall somewhat related is the SRS Guideline/criteria paper addressing ways to make the uncontrolled studies more meaningful. As a group, have they come out with anything about Braist?

[Pooka1]

What are you referring to here? I am not aware of any SRS statement on the issue.
The only thing I can recall somewhat related is the SRS Guideline/criteria paper addressing ways to make the uncontrolled studies more meaningful. As a group, have they come out with anything about Braist?

I finally found it. It is not really a statement... I misremembered there... but a mention of the launch of an SRS study specifically in recognition that the previous studies were uncontrolled and therefore didn't really answer any pertinent questions...

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.

What I question is why they got to 1985 before realizing uncontrolled studies are useless. The rest of science realized that little "detail" WAY earlier. Actually I have come to understand why controled studies are not the norm in medical literature. And I have realized why this is probably the number one reason why most published research results are false. Can it be more obvious what is going on here? There is a reason you can't even published uncontrolled experiments the other scientific fields. Yet these studies seem to constitute the bulk of the medical literature. Again, I know why. But again, we shouldn't be amazed why most results turn out to be false given that.

I am not aware of any "group" statement about BRAIST nor would it be interesting necessarily. We are all dealing with the same literature, yes? Nobody is secreting any controlled studies, right?

And I think things would be cleared up considerably if they simply asked three questions:

1. Do you believe bracing works?

2. Do you have good evidence bracing works?

3. Do you understand why these questions represent a distinction that is a real difference?

Belief is NOT a way of knowing. That said, bracing might eventually be SHOWN to work. The poor studies to date cut both ways... it's possible a favorable result has been hiding in the miasmic literature. But someone has to show it, not just "know" it when we are talking about putting baby kids in braces.

[hdugger]

It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else :)


Belief is NOT a way of knowing. That said, bracing might eventually be SHOWN to work. The poor studies to date cut both ways... it's possible a favorable result has been hiding in the miasmic literature. But someone has to show it, not just "know" it when we are talking about putting baby kids in braces.

[Pooka1]

It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else :)

Excellent points. You are batting 1000 in that regard, BTW.

[concerned dad]

Regarding the topic of bracing, I think the best advice would be to find a doctor that is current with the literature. One who is aware of the strengths and weaknesses of the evidence. And then, follow their advice.

Hdugger, I hope you don’t take this as a contradiction of what you said, rather it is offered as an amplification (with caveats). The thing is, had we followed the advice of our first orthopedic doctor, we would not have made, what turned out to be, the right choice for her specific circumstance.

The obvious problem is how to assess the doctors qualifications in that regard. The parent needs to have some understanding of the issues, both pro and con. And I don’t think it is easy to gain that understanding at a forum.

I propose a reading list for parents considering bracing.

1. The Nachemson “controlled” bracing study, reported on in 1995. The one that is claimed to have “demonstrated with statistical certainty that bracing is effective compared to natural history”.

2. The various critiques of the Nachemson study, such as Dickson in 1999 when he said regarding the Nachemson study: 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 PuertoRico, 70% of the untreated group had thoracic curves and 46% of the treated group. It would be difficult to stack the odds better. I still remember the first time I read that. I almost threw up. This paper was my real first eye-opener on the bracing debate.

Or Goldberg’s 2001 paper where she notes about the 1995 study that it was:”criticized on the grounds that the groups were not as well matched as they might have been, that 6° of progression is a trivial change, and that no account was made of ultimate outcome. As pointed out by Skaggs, an untreated thoracic curve progressing from 25° to 35° but at maturity being acceptable cosmetically and not requiring surgery would be regarded as a success by the child who had had an untrammeled adolescence.” and he concludes with "the question of the efficacy of orthoses in idiopathic scoliosis remains unresolved"

3. Dolans 2007 Metanalysis paper where she concludes, after evaluating (almost) all the bracing literature: "Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. the use of bracing relative to observation is supported by troublingly inconsistent or inconclusive studies of any level.”

4. SOSORTS critique of the Dolan metanalysis (Reference req’d) where they question why she excluded the (mostly european) studies that incorporated exercise as an adjunct to bracing. (damn good question I might add)

5. The 2005 SRS Bracing paper Standardization of Criteria for Adolescent Idiopathic Scoliosis Brace Studies where they basically say that there is far too much variation in the variables of the bracing studies to draw conclusions. And, they offer a set of criteria for future bracing studies to make them more useful/interpretable/comparable.

6. The 1998 paper by Soucacos that looked at 85,000 kids in Greece and reported on the “natural History” of scoliosis in these kids over a 5 year period.

7. For balance, maybe one more paper to add to the reading list: Danielsson in 2006 updated the data from some of the girls who participated in the 1995 Nachemson study.

Our present results do not change the principal conclusion of the original SRS study: that well-performed brace treatment prevents curve progression during adolescence in patients with moderate AIS, while
observation as the intended treatment allowed 70% of patients to escape any treatment at all and left 10% with surgical treatment and 20% with brace treatment.

And he also poses the following question

One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

And the Key Points from his paper were reported by him to be:

Key Points
● Patients in cohorts with moderate- or smaller sized AIS curves at maturity had not deteriorated (beyond their original curve magnitude) at the 16- year follow-up if they had been braced initially. If only observed during adolescence, curves increased as much after maturity as those of braced patients, leaving the patients with a slightly larger curve size.
● No patients in the group of patients who were initially braced underwent surgery, while 6 in the observation group required surgery during adolescence, compared with none thereafter.
● Patients who were premenarchal at inclusion ran a higher risk of progression.

I think these 6 or 7 papers would go a long way to illuminate some of the issues about bracing efficacy. But, there are no answers to the question “Does Bracing Work” in these papers.

[Pooka1]

CD's post should be a sticky in the bracing section in my opinion. It is very valuable.

Two points...

1. In re your getting sick over the stacking of T curves in the observation group in Nachemson and Peterson (1995)... the real take home is that other folks happened to identify one confounder (different propensities for progression) out of a potential universe of confounders. We can't assume that is the only one or even the most significant one although it is very important. That is the key point for me. We don't know what we don't know.

2. in re not including the bracing+PT: I have been thinking about this and agree with not including it. I think there is enough evidence that curves can be reduced temporarily with PT such that it is a real confounder. Heck, that Spinecor article you posted had a kid reduce her curve by 11* just standing in a rakish manner. :D

3. I'm not convinced SOSORTS is evidence based.

ETA: THREE POINTS!!! (said in Monty Python fashion!)

[CHRIS WBS]

What did the curves start out at?

Are you saying she came out of the brace at 25* and that has never increased even to what it was prior to bracing? How often has she had radiographs since? How recently?

I wasn't aware there was evidence bracing would permanently reduce curves. If she can document this, maybe someone should write this up as a case study.

I'll also not we have a few folks here who wore Milwaukees and were compliant who still needed surgery. It's a moving target and we should never imply noncompliance ever results in surgery. Just can't know that.

She said she had a thoracic curve of 42 degrees and a lumbar curve of 30 degrees before being braced. She’s originally from New York and was under the care of a Dr. Kiem (I think his name has been mentioned here) at Columbia-Presbyterian. I don’t know how often she has had radiographs taken, but she has no indicators of progression such as height loss or clothing not fitting the way it used to. She’s a tall woman of 5’9” and says that’s where she was at out of her brace.

[hdugger]

Hi Concerned Dad,

All that tells us, though, is what we know already about medical research. It really, really su**s. (And, yes, that is my professional opinion :)) The literature on surgical methods is far worse, in my limited experience - it's not only not controlled, but also largely anecdotal.

Medicine really is not ruled by research. It's much more of an art then a science. Maybe it shouldn't be that way, but that's the way it is. Given that, the very best we can do is find a Dr we trust and get the benefit of all of their non-published, non-scientific anecdotal experience. As someone who had read and done medical research, I would be far more comfortable with a Dr. who had paid attention to the experience of their patients for 20 years then one who had read all of the literature. (Although, frankly, I'd be pretty suspicious of someone who wasn't interested enough in their specialty to read the research, flawed as it is.)

What I think the literature *is* good for is to give all of us lay people enough knowledge to figure out what questions to ask in order to find a doctor to trust for all of our medical scoliosis needs (surgery, bracing, pain relief, etc.) And it's great for giving us leads in all those areas that doctors don't handle very well (exercise, diets, etc.) But I don't think that medical research is every going to shine a very bright light on these areas.

[concerned dad]

Two points...


I counted 3 :cool:


Heck, that Spinecor article you posted had a kid reduce her curve by 11* just standing in a rakish manner.

I think you are interpreting that 11 degree thing wrong. That portion of the paper was discussing the "corrective movement" that the brace was attempting to acheive.

The last and most important parts of the brace are the corrective bands. The bands are attached between the Pelvic Base and the Bolero while the patient is in their corrective movement and they are sequenced in order from 1-4 to cause the body to be held in the corrective movement. Some of the bands will have high tension on them and others will have virtually no tension....

It is part of the procedure to fit the brace. Although, I have to say, it was never discussed once that I recall during our two trips to Montreal. But, they did have my daughter stand funny when they first fit the brace to her.
Geez, I'd just as soon forget that whole thing.

[LindaRacine]

Wow, you must glow in the dark!


I don't know how useful this information is, but it's interesting. This is my curve progression since I was first diagnosed as a 6 month old baby in 1976.

I was immediately put into a Minerva plaster cast, and then a couple of years later I started to have EDF casts - exactly the same sort that are used for serial casting today, but I was too old for them to be able to provide any correction. I also wore Milwaukee braces from the age of about 3 - I'd tend to wear the casts in the winter and braces in the summer, possibly because of the heat. Starting out with this size of idiopathic curvature as a baby, I am convinced that without the braces and casts my curves would not have stayed in place as long as they did.

1976 1st July: Upper Curve 62, Lower Curve 32

1977 26th Aug: Upper Curve 62, Lower Curve 45

1978 16th May: Upper Curve 63, Lower Curve ?

1979 29th Jan: Upper Curve 63, Lower Curve 55

1981 Jan 15th: Upper Curve 62, Lower Curve 55
Not seen for a year.
Would need fusion at age of 9 or 10.

1983 Feb 14th: Upper Curve 62, Lower Curve 53

1983 Nov 11th: Upper Curve 64, Lower Curve 50
Shows deterioration

1984 Mar 30th: Upper Curve 61, Lower Curve 55
Curves deteriorating
Will need surgery sooner rather than later

1985 Oct 18th: Upper Curve 70, Lower Curve 59
Clearly needs surgery
I had my first set of operations at the RNOH in Stanmore in January 1986. I had a discetomy and anterior release on the 13th of Jan, followed by two weeks in halo-tibial traction, and then a Harrington Rod insertion and fusion from T1 - T12 on the 28th January. When I woke up, the first thing I heard was a nurse telling her colleague that "that space shuttle has just blown up" - it was the day of the Challenger disaster.

My curves were 75 degrees (thoracic) and 55 degrees (lumbar) immediately before this surgery, and 35 degrees (thoracic) and 41 degrees (lumbar) afterwards.

Following this surgery I wore a cast for 6 months to protect the fusion, and then a TLSO brace for another 6 months, but did not wear a brace at all after that; I was simply monitored to keep an eye on the lumbar curve. My upper curve settled down at around 45 degrees.

1987 Aug 21st: Upper Curve 45, Lower Curve 38
Rib prominence reduced to 20 degrees

1988 Feb 19th: Upper Curve 46, Lower Curve 40
Rib prominence now at 27 degrees

1990 Feb 21st: Upper Curve 45, Lower Curve 46

1992 Jan 10th: Upper Curve 45, Lower Curve 58
Rib prominence 29 degrees

I had my lumbar curve fused in 1994, and it went up to 70 degrees by the time of that surgery. That lumbar curve, which had mainly stayed put with bracing before I was ten, progressed during my adolescence when I wasn't wearing a brace.

Obviously nothing can be proven with this information but it is interesting I think :) Based on this, and despite having worn a Milwaukee and casts for the first ten years of my life, if I had a child with scoliosis I wouldn't hesitate to brace them.

[LindaRacine]

This is an excellent thread. I thought I'd add a few comments.

1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.

2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.

3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.

Regards,
Linda

[Pooka1]

This is an excellent thread. I thought I'd add a few comments.

1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.

Yes as Dolan pointed out, we are in an uncanny situation where there is no real evidence for a treatment that is considered the standard of care. I don't think some people grasp the strangeness of that.


2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.

I was not aware bracing advocates ever claim a brace permanently reduces a curve. I thought the claim was that it hopes to not let it get larger and that after you remove the brace for a minimum amount of time (days) the curve will return at least to where it was when you started bracing. That's why I think this case if she can document it, is unusual.


3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.


Yes they felt it worked on the basis of uncontrolled and poorly controlled studies. They may have incorrectly thought they had evidence also. I can make anything appear to work in any number of uncontrolled and poorly controlled studies. There is a reason you can't publish uncontrolled studies in other fields of science.

And I stated that Nachemson and Peterson inadvertently stacked the patients. We have no evidence that there was any subterfuge or anyone with a preconceived idea for the results so nobody should be accusing folks. The surgeons and researchers are the good guys in the scoliosis game and represent the only hope of ever solving this problem through well-designed science.

[Ballet Mom]

This is an excellent thread. I thought I'd add a few comments.

1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.

2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.

3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.

Regards,
Linda

Thank you for that great information Linda!

I wonder if it would be possible for the SRS to list the bracing beliefs of each surgeon they have on their Find a Doctor list. Their true beliefs, not their go-through-the-motions beliefs. I think a great part of this bracing problem could be solved by getting the correct patients and their beliefs to the correct doctors who have similar beliefs. This would be tremendously helpful to the parents and patients trying to find an appropriate doctor.

For instance, I took my daughter for a second opinion to a highly-regarded surgeon, you'd recognize his name easily. I would at this point still take my daughter back to him IF she needed surgery. I'm sure his surgical skills are phenomal...and he's a nice doc. HOWEVER, my daughter was in a night-time brace and I was asking him that since many studies show the TLSO braces to be more effective than the brace she was currently wearing, wouldn't it be better for her to be in the TLSO.....and what did he do but turn around to my daughter, look her in the eyes, and plaintively say to her, Oh, you wouldn't want to wear a brace all day, would you? (And yet, that is the brace he prescribes). My jaw dropped in astonishment.

Thanks to this doctor, my daughter would never again think it was okay to wear a brace full-time. She went in to his office with no problems with it, and came out and she wouldn't even consider going to Luke Stikeleather to be evaluated for a Cheneau brace. Thanks for the support Doc! :(

I later found out that this surgeon doesn't believe in bracing (through his physician's assistant), and I suggest that he has created his own reinforcing belief. He commiserates with the patient, (Oh, you poor baby fluffy bunny, what is bad old mommy trying to do to you?), the parent gets no support from the surgeon who is supposed to be the one to help support the parent in bracing, and the child will never wear the brace that he has prescribed to them. And that certainly appeared to be the case in his waiting room.

Even with the research that CD is recommending that parents do before going to an orthopedist, they wouldn't find that type of belief information. And it's a disservice to find out these beliefs after the fact when your child has already been swayed into believing that bracing is the most hideous thing possible.

I was lucky to find a doctor for her second brace that was actually finding success with nighttime bracing through my daughter's orthotist who I new from her original brace, however, I would have rather given my daughter a shot at having a reduced curve from the Cheneau brace. I think she would have been ultimately happy about that.....but due to that surgeon we visited, it was out of the question. And it makes me angry to this day.

[Ballet Mom]

Pooka,

The Soviet Union collapsed from the weight of its horrible policies. May it stay dead forever and not resurrected here. The communist countries destroyed countless lives through their belief that they could do anything to anybody and not worry about the destruction of others. Think of just the East German women's swim team and how the communist doctors absolutely destroyed those women's lives... do not even try to resurrect that here. You'll have a fight on your hands.

[concerned dad]

I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.



The stacking the deck comment that Dickson made was not meant to imply malfeasance. I think he was pointing out the irony. Nachemson published the results of the study (that took 10 years to complete) and in the very same monthly edition of the scientific journal, someone else published the results of a study that showed there was a different prognosis for different curves. No one said he should have figured this out before hand because they didn’t know it.

It is interesting to read Lori Dolans comment from the other forum (http://www.scoliosis-support.org/showpost.php?p=118546&postcount=21)offering Dr Nachemson’s take on the Braist study:

Dr. Nachemson was on the protocol planning committee for BrAIST. He felt it was a worthy, although very difficult, undertaking. He felt there were still questions to answer.

As Sharon points out, that curve stratification is just one of potentially many other factors to consider. For example, the whole Risser 0 thing that Sanders noted. Girls are usually Risser 0 for the first 5 stages (out of 8) on the digital skeletal age (DSA) assessment scale. And there is a difference in expected outcome for a specific curve in a girl with DSA of 1 compared to a DSA of 5.

So, if you take 100 girls risser 0 and put them into two groups (braced and unbraced) and then it turns out that most of the unbraced girls were DSA 1 and the braced girls were DSA 5, the results would surely show that bracing was effective. (and of course, the converse would show exactly the opposite results).

BTW, Sharon, your point about a possible reason why Dolan excluded the exercise and bracing studies from the metanalysis is a good one. I had not thought of that.

[concerned dad]

Medicine really is not ruled by research. It's much more of an art then a science. Maybe it shouldn't be that way, but that's the way it is.


Hi Hdugger. Things are slowly getting better on the medical research front.
Here is a discription of one of the first bracing studies for scolioisis:


… the efficacy of such treatment, whether achieved by corsets or plaster casting, seems to have been continually questioned. See, for example, the two reports of Freiberg et al from 1914 and 1915 and their highly equivocal conclusions. Although the methodology of this study reads strangely 85 years later (an appointed committee of three specialists inspected the work of four other leaders in the field), they completed their investigation by sending out a simple questionnaire to physicians asking if they had personal experience of undoubted benefit or cure from plaster or removable jacket, what their methodswere, and would they submit records as evidence. At the time of writing (Freiberg et al, p. 18), they had received 50 replies but no evidence, forcing them to state “The Committee therefore concludes that of the fifty men who have replied. . . none is in possession of material evidence with which to give an affirmative answer to Questions 1 and 2.”

This old turn of the last century research was related in Goldberg 2001. Heck, maybe the first Equipoise study of scoliosis.

[concerned dad]

I added one more paper to the "reading list" above

[Pooka1]

Hi Hdugger. Things are slowly getting better on the medical research front.
Here is a discription of one of the first bracing studies for scolioisis:


… the efficacy of such treatment, whether achieved by corsets or plaster casting, seems to have been continually questioned. See, for example, the two reports of Freiberg et al from 1914 and 1915 and their highly equivocal conclusions. Although the methodology of this study reads strangely 85 years later (an appointed committee of three specialists inspected the work of four other leaders in the field), they completed their investigation by sending out a simple questionnaire to physicians asking if they had personal experience of undoubted benefit or cure from plaster or removable jacket, what their methodswere, and would they submit records as evidence. At the time of writing (Freiberg et al, p. 18), they had received 50 replies but no evidence, forcing them to state “The Committee therefore concludes that of the fifty men who have replied. . . none is in possession of material evidence with which to give an affirmative answer to Questions 1 and 2.”

This old turn of the last century research was related in Goldberg 2001. Heck, maybe the first Equipoise study of scoliosis.

There is nobody out there who knows what the heck they are talking about who would claim there is evidence bracing works. I see nothing has changed in decades and decades.

This stuff is clearly a very tough nut to crack research-wise. I give these guys all the credit in the world for at least trying. But I question the ethics of enrolling even a single kid in an uncontrolled bracing study when you can't get an answer even in principle. The inability to understand the limitations of the uncontrolled studies combined with the inability to understand the limitations of the poorly controlled studies is the reason bracing is still prescribed. Not a good situation.

Bracing is and remains an experimental treatment and I think surgeons need to honestly present it using that term so parents can be honestly informed of the state of the art.

Now I think the nighttime braces like my daughter wore are a gray area. Our surgeon said he never would have put my daughter in a 23/7 brace but thought it was worth a try in a nighttime only brace. My daughter tolerated it well enough and all that matters now is that she doesn't regret the attempt. I am sort of glad I didn't know the bottom line on bracing at that time because I would have pushed back on the brace had I known instead of just blindly agreeing to the brace. All bracing, not just the nighttime bracing is too experimental at this point for my taste but if my daughter wants to try it, okay.

[Pooka1]

I added one more paper to the "reading list" above

That post really should be a sticky at the top of the bracing forum.

[concerned dad]

I appreciate the comment but I really think this whole discussion should be moved to the Research thread.

Balletmom had a very valid point about the second doctors comment

Once the decision is made, encouragement for compliance is important. As Texmarinemom says, and I'm paraphrasing here, "no brace is going to work sitting in the closet". Having a frank discussion casting doubts about efficacy as we are doing here can be damaging.

And I should add, (even though Linda once referred to me as "anti bracing"), I could envision, based on what I know now, bracing my daughter if her circumstances were different. I would, however, likely lean toward a night brace (or, <gasp>, maybe even a SpineCor if she were very young).

[Pooka1]

Having a frank discussion casting doubts about efficacy as we are doing here can be damaging.

Or maybe empowering.

[mamandcrm]

As I read the initial post, this one was supposed to be for people to share their personal experiences with bracing with the poster, not another discussion of the bracing literature.

Linda, can the "research-related" posts be moved to the research section under another title, and this thread be put back on track?

[Pooka1]

It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else :)

Actually, I'm not so sure we are dealing with belief versus evidence on certain other things.

If you would be so kind, I'd be very interested in your professional opinion on that science-based medicine blog I posted...

http://www.sciencebasedmedicine.org/

It's sort of like Quackwatch but seems to have a larger staff of medical folks contributing as far as I can tell. And it doesn't shy away from criticizing the political nonsense that contributes to the problem.

Thanks.

[hdugger]

I'll post my reply here, before Linda moves it all over to research, but what I'm trying to say is that most aspects of scoliosis treatment are far from nailed down. That includes everything from major questions (like are you saving the spine by putting off surgery as long as you can, or are you actually saving it by having the surgery as early as possible even with a non-progressing patient) to details (like how to best curve the rods). If there are large controlled studies about these question, I haven't run across them.

That leaves me a little puzzled about why we always have these long, detailed "but is it science" discussions about bracing while deferring to our doctors' experience completely on all surgical matters.

I had the same response to the "science-based medicine" blog. Yes, it's true that many of these alternative treatments haven't been tested. But, then again, neither have many of the mainstream treatments. It just feels like a mindset, instead of a genuine exploration of what's working and what's not.

Then again, maybe I'm just feeling contrary :)

[Pooka1]

I'll post my reply here, before Linda moves it all over to research, but what I'm trying to say is that most aspects of scoliosis treatment are far from nailed down. That includes everything from major questions (like are you saving the spine by putting off surgery as long as you can, or are you actually saving it by having the surgery as early as possible even with a non-progressing patient) to details (like how to best curve the rods). If there are large controlled studies about these question, I haven't run across them.

That leaves me a little puzzled about why we always have these long, detailed "but is it science" discussions about bracing while deferring to our doctors' experience completely on all surgical matters.

I had the same response to the "science-based medicine" blog. Yes, it's true that many of these alternative treatments haven't been tested. But, then again, neither have many of the mainstream treatments. It just feels like a mindset, instead of a genuine exploration of what's working and what's not.

Well I would say surgery is different in at least four respects...

1. We have "established" procedures let's call them as opposed to "experimental" procedures. I don't know how an experimental surgery crosses over into established... maybe you know. But I think it is happening with VBS for example.

2. With surgery, there is a real result, one way or the other, in real time. This is a distinct advantage over something like bracing where you have to run the experiment out for years and then you may just be measuring which confounders crept in at that point. Now of course the long term with the newer instrumentation is unknown but I think we know enough from the problems with the older instrumentation, from the folks who never availed themselves of surgery, and also from the older folks who do now avail themselves that it is at least promising and I would say very promising.

3. Is there any case controlled study on setting broken arm bones? Now I realize this is not a perfect comparison for spinal fusion but let's see where this goes. Surgery, yielding immediate results, can amass huge amounts of empirical data. Now the only way to evaluate that is through long-term studies (a few decades versus a few years for bracing) versus non-surgical cases and again you are looking at confounders possibly taking over. It's hard to study but there is way more definitive data one way or the other with surgery and you have it in real time.

4. Present-day spinal surgery didn't appear out of a vacuum. There is a bunch of data on how to do surgery in general and there is a fair amount known on orthopedic surgery in particular, albeit mainly empirical. It is a process of perfecting the previous result and they are in the nth iteration of that. None of that can be said of bracing.


Then again, maybe I'm just feeling contrary :)

If we can include devil's advocate in "contrary," that is always in order as is always trying to be able to argue the other side of any argument. And by argument I mean an actual argument with two real sides and not things like science versus religion.

Oh and a motion to adjourn is ALWAYS in order. I learned that in Total Quality Management which they make the research folks go through also. :eek:

[LindaRacine]

I didn't move the thread to the Research forums, but I did move it to the Parents forum. If anyone notices posts in the kids forum that are started by adults, I would appreciate having my attention drawn to it.

Thanks.

[Ballet Mom]

That post really should be a sticky at the top of the bracing forum.

The sticky note that is needed at the top of the bracing forum is a warning note to parents that by allowing their children to read this forum, their children will be under continuous assault by anti-bracing proponents...and their child's treatment could be seriously jeopardized.

[concerned dad]

BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.
I engaged folks here in such a discussion. I'm sure it wasnt the first. If you look at some of my early posts, you’ll see that I shared your views on Braist being ethically questionable and I looked hard at all the bracing data I could find; sparring with Sharon all the way. She didn’t just wear me down, she helped me realize that we just don’t know the answers. I respect the fact that you looked at the same data and have a different opinion on some issues.

Do you see value in exploring these issues in a public forum?
Do you (or anyone else) have suggestions for how to openly explore these issues yet not discourage a kid who happens to read it?

Maybe the issue is rehashed too much and CD should just move on. When push comes to shove, there is little I can offer here except participation in a discussion like this.

Mamandcrm, you’re right, the thread was hijacked from its original intent. Sorry about my role in that. Maybe Linda (as if she doesn’t have enough to do) could bisect the thread and figure out a way to salvage the original intent.

[LindaRacine]

Maybe Linda (as if she doesn’t have enough to do) could bisect the thread and figure out a way to salvage the original intent.

As far as I know, there's no way to do that. The thread shouldn't have been in the kid's forum to begin with as far as I'm concerned.

[mamandcrm]

That's true, but the intent of the thread, which was very specific, should have been respected. It's very easy to start a new thread to discuss different subject matter. Muddling or redirecting threads makes them very hard to follow and of limited use to those who are trying to find information on particular subject matter.

[Pooka1]

I actually wasn't aware that parents shouldn't be posting in the bracing forum even about bracing.

I understand Linda's reason... parents should be posting in the parents' area, but I never knew bracing posts by parents shouldn't be in the (kids) bracing section.

I mean the "Surgery" section is also in the kid's section and that is mostly parents starting threads. I have never heard a comment that parents shouldn't be starting threads in that section and it's good because I have started a bazillion threads in that section including the ones tracking the surgery of my kids.

Maybe it would help if the same section names (Bracing, Surgery, etc.) were in parents' section?

[mariaf]

BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.
I engaged folks here in such a discussion. I'm sure it wasnt the first. If you look at some of my early posts, you’ll see that I shared your views on Braist being ethically questionable and I looked hard at all the bracing data I could find; sparring with Sharon all the way. She didn’t just wear me down, she helped me realize that we just don’t know the answers.

Great point, CD. On the one hand, as you say, we don't want to give a child a reason to be non-compliant. On the other hand, many parents (as you did) want and need to have a thoughtful and thorough discussion with others on this forum to look at the issue of bracing from all aspects, and to hear the opinions and experiences of others.

[Ballet Mom]

BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.

Do you see value in exploring these issues in a public forum?
Do you (or anyone else) have suggestions for how to openly explore these issues yet not discourage a kid who happens to read it?

Maybe the issue is rehashed too much and CD should just move on. When push comes to shove, there is little I can offer here except participation in a discussion like this.



Issues that pertain to scientific studies that cast doubt on the effectiveness of bracing belong in the research forum only. Casting doubt on bracing does not help any child or parent that is trying to support their child's bracing. And in fact, your Danielsson study that you posted shows quite a bit of evidence that bracing is helping kids.


● Patients in cohorts with moderate- or smaller sized AIS curves at maturity had not deteriorated (beyond their original curve magnitude) at the 16- year follow-up if they had been braced initially. If only observed during adolescence, curves increased as much after maturity as those of braced patients, leaving the patients with a slightly larger curve size.

● No patients in the group of patients who were initially braced underwent surgery, while 6 in the observation group required surgery during adolescence, compared with none thereafter.

● Patients who were premenarchal at inclusion ran a higher risk of progression.

If anything I would have that posted at the bracing forum with the caveat that bracing will not be effective on all patients, particularly if the brace is not used as directed.

If they are more interested in scientific studies, I'm sure they'll find the less traveled research forum. It can be quite dull after all.

I have always enjoyed your posts, and if you left, the problem would still be here as Pooka has made it her life's work in every one of her non-surgical posts, for whatever bizarre reason, to liberate these poor baby fluffy bunnies from their braces so they can be exposed to any number of surgical complications unnecessarily...both short term and longterm. A grown woman should know better.

[Ballet Mom]

I didn't move the thread to the Research forums, but I did move it to the Parents forum. If anyone notices posts in the kids forum that are started by adults, I would appreciate having my attention drawn to it.

Thanks.

I don't think it's ever been clear that that the bracing forum was for kids only. Perhaps a sticky note making that clear is in order.

[Ballet Mom]

Or maybe empowering.


Though the mills of God grind slowly, yet they grind exceeding small;
Though with patience he stands waiting, with exactness grinds he all

[Pooka1]

Though the mills of God grind slowly, yet they grind exceeding small;
Though with patience he stands waiting, with exactness grinds he all

I think you just told me to go to hell, yes? :D

Sell crazy somewhere else, okey-dokey?

[bracegirl]

Hey! I just have a comment on compliance, now to be honest, I didn't go through and read the entire 4 pages of comments on this, but a few observations from a former brace-wearer. firstly, I was 100% compliant in my brace. I was instructed to wear my brace 23/7. And I did. for 5 years I was completely compliant. I lived for my xrays because it was a doctor condoned day off from my brace. During my treatment I met kids who were not compliant. as soon as their parents would be out, or not watching them, they would take their brace off and hide it under their bed. I never understood kids like that. I mean, my mentality was that if a brace could prevent a dangerous surgery that would limit motion for your entire life, why would you not try to prevent that by wearing a brace. and if you are gonna wear a brace, then why only do it halfway? If i was gonna wear the brace, I was gonna do it 100%. I remember meeting one girl in particular who hid her brace. I just couldn't understand someone who would jeopardize their own health by not wearing a brace. But at the same time, I understand that this mentality is not always shared by others, hence the issues of compliance. so yea, thats my two cents worth.


and in answer to the original question, I wore a cheneau brace for 5 years. and my out of brace curves went down. and i am so glad i wore it, because my curved increased in a boston/TSLO. so yea....

[LindaRacine]

There's a Parents forum, and there's a Kid's forum. The Kids forum was specifically created so that kids can communicate with other kids. I don't mind an occasional adult post there, but let's please leave it for it's intended purpose.

--Linda

[Bigbluefrog]

Wow, thanks for the honest replies to the original topic...

So far I see Rigo cheneau brace is very successful.

some had limited results with Spincor and switched back to original brace
although Spinecor thread had most interesting posts and over 2000...unfortunately some of the posts where not about spinecor benefits.
several here posted good results...why is that? Less out of brace...due to the right fitting and compliance, the right doctor?

a few with Boston brace.

My conclusion is this, if one is compliant the brace can be successful.

I do have to wonder if the success with the Cheneau brace is more of a combination effort with PT Schroth and bracing.

This is my conclusion:
Bracing is successful if:
1) proper fit
2) refitted after growth
3) compliance
4)exercises or PT for scoliosis/ individualized with curves

Cheneau has the most benefit (Haven't found anyone try it and switched)
Spinecor Some started with it and switched and vice versa
Boston Same as Spinecor
A few input on night time braces as being successful

Non of the braces work good with a diabetic pump...not really, without compromising the brace structure

[leokatmom]

My daughter's pedo doc spotted her curve at age 11. It was stable at 14 degree for almost a year and then jumped to 32 over the summer risser 0. She wore a boston brace for almost 2.5 years . She was very compliant for about a year and then not so much at the end . The brace has worked for her so far. At her last appt Jan 09 her curves had settled back to about 11 and 21 . She is now 16 .The docs told us her curve would most likely settle back to its prebrace point after 1-2 years. We go back the end of this year and will see.

[mamandcrm]

Hi BigBlueFrog,

Just FYI, my daughter does not do Schroth (she's the Cheneau wearer who went from 35 degrees to 14 degrees in 9 months). She's too young, we've never looked into it. Re: diabetic pump, don't rule out the Cheneau. My daughter had lots of holes in her brace (large ones at times). It may be that a hole may be placed that will not affect the integrity of the brace. If you would like more info on who we see for the Cheneau, please PM me.

Chris

[michele27]

Hi Big Blue Frog,

My dd has been wearing a TSLO for 5 months now. She is supposed to wear her brace 23 hrs/day, but because she dances competively, it is more like 20 hrs/day. She just had her first out of brace x-ray (24 hrs out of brace) and her top curve was 26*, down from 43* in June, but 10* higher than her in brace x-ray from July (which was to be expected). That is promising and the dr was pleased. She is fully compliant and has had a really positive attitude about bracing. Her attitude is that wearing the brace may keep her from having to have surgery if it works and delays surgery if it doesn't. I take her results at face value. I am hopeful that this means bracing is working for her, but cannot know for sure until she is completely out of the brace. For now, it is doing what we want and she has grown 2 inches since June. The positives are outweighing any negatives. If that were to change, so would our decision on how to treat her scoliosis.

Good luck with your daughter. :)

Michele

[mamandcrm]

Wow, Michelle, those are great results. I haven't heard of such success with a Boston brace before--it's good to know that there are cases like your daughter's out there.

[bas2101]

My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.

I do not wish to list the numerous treatments we sought from 7-12 years old, because I do not wish to degrade a treatment, simply because it did not halt my daughter’s progression.

By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.

When we saw the surgeons in Jan 2008, they said there was nothing we could do, and that her surgery could not even wait until summer because of the threat of further progression. She was pre-menarch, Risser 0, and still had a lot of growth left. Yet, these indicators were the same reasons we were still able to brace her and have some confidence that it would either stabilize or improve her curve. While her growth was her enemy, it was also her only hope.

While, scoliosis will always be a part of my dd’s life, I believe our positive experience is a testament to Cheneau/Schroth. My daughter was pre-menarche, Risser 0, and grew over 4 inches, while taking her main curve from 68-70 to 59.5 (60 if you wish). She also improved her lung function (which is over 100%), her alignment by over 4.5 cm, and was able to carry out her growth. I only wonder what improvements she would have had if we had started this sooner (oh well!).

Since she is currently still growing at 14 yrs, Risser 2, and barely post-menarche, she will remain braced for the next year or so, and then begin the weaning process-at which point, Schroth will be more important for her quality of life. If she chooses surgery in the future, it will be her choice. But, for now, her scoliosis is manageable, and not the emergency it was made to be 2 years ago.

Anyone interested in more details, can PM me.

[Bigbluefrog]

that is encouraging news...I hope your daughter has increased success with her therapy.

i was discouraged that schroth therapy is not covered by insurance.

It was $200 an hour, I do like the program and would be willing to pay again.

We have officially started her diabetes pump yesterday, so for the next month we are focusing totally on that.

We still do the home yoga and exercises...it appears that her upper curve is less noticeable and her lower curve lumbar is more pronounced now.

I am going to switch gears we were focused on the upper curve correction, now I will focus on the lower one.

[bas2101]

Hi Bigbluefrog-

I also hope your daughter does well.

My insurance covers Schroth for 40 visits/year (which I understand is a lot more than most). It falls under my coverage for physical therapy. So, I have been lucky that each day (4 hours) only ends up costing my $20 co-pay. If you have PT coverage, you should be covered. I know that Scoliosis Rehab offers a discount if your insurance does not cover the visits (also in Wisconsin-Stevens Point).

Best to you-

Brooke

[Bigbluefrog]

Do you attend the Stevens point one?

or the Milwaukee one?

[Bigbluefrog]

why do you think some are having success with bracing?

Someone in a previous post stated success even without PT.
Noticed a significant reduction of the curve.

Orthopedics say the Brace May or May not work......wow no wonder I have trust issues.

It would be great to pull in older posters who have completed scoliosis therapy to find out the outcome. I noticed most don't post anymore...aren't you curious to hear what happened to them...did they avoid surgery, did they have success with their scoliosis treatment.

[michele27]

It's been a while since I posted but dd had her 2nd out of brace appointment 2 weeks ago and her measurements had gone down even more. Her top curve was 24 and her bottom curve was 16. The x-rays were taken 24 hours out of brace and she wears her brace an average of 20 hrs a day so we are quite pleased at this point. :)

[mamandcrm]

Michele, congratulations on your daughter's continued success with her brace--it's great news!

[michael1960]

Michelle

That is great news. My daughter is in the Boston brace too (and a SpineCor). Her correction is about 30 degrees to 13 degrees in the Boston brace. Your in-brace correction from 42 to 16 is outstanding. May I ask where the apex of the curve is for your daughter?

My daughter's thoracic apex is around T7 or T8. I had heard the Boston brace has some challenges at this level and above. With my daughter being only 8 yrs. old and very flexible I was hoping for greater in-brace correction. It is still good, but I was hoping we would get more. I had read that the amount of out of brace curve reduction is dependent on how much in-brace curve reduction is achieved. It makes sense.

We are beginning to tighten it a bit more after the first fitting, so I would assume we may be getting some more reduction. I checked with the doctor and he said that it was ok to tighten it as long as my daughter was ok with it.

Congratulations again. It is very encouraging to us.

Michael

[Bigbluefrog]

It's been a while since I posted but dd had her 2nd out of brace appointment 2 weeks ago and her measurements had gone down even more. Her top curve was 24 and her bottom curve was 16. The x-rays were taken 24 hours out of brace and she wears her brace an average of 20 hrs a day so we are quite pleased at this point. :)
:D wonderful!!! its good to see she is doing well.

Ambrea in brace measurements T 10 degrees and L 20 degrees.

the lumbar is not really moving much....the brace is tight. Her first night trying to sleep in it. I gave her an ice pack to keep her cool. IF she hasn't fallen asleep by midnight I will have her take it off....small steps to get there.