Stop trying to convince that official western medical community is the only option..

[flerc]

Yes of course, but surely they also don't want surgery. The claim should to be for something better not for discontinue braces. And certainly braces should not to be used in any case.

[Pooka1]

This is an ongoing study

http://www.ctsdmc.org/projects/braist/index.html

Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST)

This is a Phase III, multi-center, prospective randomized, partially blinded clinical trial, designed to determine whether the use of thoracolumbosacral orthoses (TLSOs) lowers the risk of curve progression in subjects with Adolescent Idiopathic Scoliosis (AIS) relative to observation (watchful waiting) alone. Bracing is currently the standard of care for the treatment of adolescent idiopathic scoliosis (AIS). Despite many years of research, the effectiveness of bracing is still in doubt, and it is not known with any certainty, which, if any, patients with AIS will respond favorably to bracing. The primary aim of the study will be to measure the relative risk of curve progression to greater than 50 degrees in the two treatment arms. This outcome is significant because it indicates a high risk for continued curve progression throughout adulthood, and is therefore the parameter at which fusion and instrumentation are generally indicated. We will concurrently measure and compare the quality of life and psychosocial adjustment of these adolescents. We will also estimate the relationship between bracing dose (wear time) and curve response to develop a predictive model for the outcome of curve progression.

(emphasis added)

My point in posting this material is not to have people ignore the advice of their surgeons. It is to give factual information on what experts in this field think.

The ongoing objections to presenting factual material are reprehensible in that they are objections to people being given information from experts in this field.

There are people on this group who seem to be against mentioning BrAIST if someone's surgeon didn't first mention it. That is unethical FULL STOP.

What is my point? It is to make it clear that nobody needs to ever feel like there is good evidence that they missed a boat by missing the bracing window or by not being compliant with bracing. Kids and parents have enough to worry about without beating themselves up over imaginary problems.

[Pooka1]

Yes of course, but surely they also don't want surgery.

What is the evidence bracing has avoided a single surgery? It might have helped some kids avoid surgery but the treatment is so torturous that a rational person might want to see some damn good evidence of efficacy before trying. That doesn't mean a person who does want to try is not rational. It is not crazy if the child wants to try and is fully informed. It is unethical to make any noises whatsoever about linking brace wear to surgery avoidance for life (i.e., what patients think when embarking on bracing) with the evidence in hand.

[Pooka1]

BrAIST

http://www.ctsdmc.org/projects/braist/background.html

The U.S. Preventive Services Task Force resolved in 1996 that screening asymptomatic adolescents for AIS was not warranted due to the lack of evidence that bracing halts the progression of curves. According to the report, population-based screening is based upon a set of critical assumptions, including that screening is ?accurate and reliable in detecting curves, that early detection of curves results in improved health outcomes, and that effective treatment modalities are available for cases detected through screening.? A key assumption of this causal pathway is that small curves noted during screening progress to curves of clinical significance, potentially resulting in significant health problems. A second assumption of this pathway is that early detection positively alters the clinical outcome.

Additionally, for the screening process to be considered useful the benefits of early detection must outweigh the potential adverse events of screening and treatment. The USPSTF concludes, ?Beyond temporary correction of curves, there is inadequate evidence that braces limit the natural progression of the disease.? The Canadian Task Force on Periodic Health Examination and its British counterpart have come to similar conclusions.

(emphasis added)

[mariaf]

Yes of course, but surely they also don't want surgery. The claim should to be for something better not for discontinue braces. And certainly braces should not to be used in any case.

When you say 'surely they don't want surgery', of course nobody WANTS surgery. But many kids would choose it over bracing. When David was about to have VBS, he wasn't old enough to fully understand or be part of the decision-making process. But his sister, around 13 at the time, sensed that I was mulling over this decision in my head (I did NOT make it lightly) and being the dear, outspoken child that she's always been, said to me "Mom, you can't make him wear that brace to school when he gets older. If it was me, I would definitely want the surgery".

She gave me a teenager's view and it was very valuable.

It also echoes what I hear from parents of older kids who are, say 12 or 13, and who have explained things to their children and have made them part of the decision-making process. The vast majority of these kids, when given the choice of VBS (or now tethering) or wearing a brace for the next 2 or 3 years, choose to have surgery. The thought of wearing a brace at this time of their life, to middle school or maybe to freshman year of HS when they are starting a new school, is just too unbearable.

[flerc]

Of course should to be something traumatic, at least in many cases, but surely none parent in the world (maybe kids of course) may refuse to use it, having the certainty that surgery (at least fusion) will be avoided. So is only a matter of chances.
I’m sure the brace protocol must to be changed. It would have not sense to accuse guns to be dangerous and ineffective because some people instead of shoot the attacker shoot to themselves.

And certainly, ‘evidence’ in something so complex, cannot be enough.. If I don’t found enough evidence saying it’s good or only some evidence suggesting is not good, then I conclude is bad. It could have sense if we would have a gigantic public data base containing the record of all cases where the method was used in the world and the outcomes. Otherwise, you only may say ‘I don’t know about any evidence’ instead of ‘There is no evidence’.

Of course, parents and everyone affected in a direct or indirect way by a serious health problem, should try to know about a similar case, what kind of solutions were used and the outcomes. But also to understand the problem in order to evaluate the situation, the chances, feasibility, cost/benefit, risks.. is something complex and of course the easiest way is to leave all the problem in the hands of some professional. But is not the professional who is suffering the effects of that problem. In the best case, he only will does his job the best he can.. regardless what kind of professional he is.. is the same if he is a surgeon, a chiropractor, neurosurgeon, physiatrist.. and is the same if the ‘solution’ to evaluate is a brace, surgery, swimming, Pilates or taking a bath every day.
Blind faith in the professional and the ‘solution’ should to come only after the choice was done, not before.. and only while it seems to work. Unfortunately the last may have not sense if the ‘solution’ chosen is irreversible.

So parents evaluating the convenience to ‘obey’ the doctor recommending brace, should to ask him about similar and successful cases. And should to have some idea about scoliosis in order to evaluate if it is a good idea in the case of their son or not.
Of course is something simple to say.

[flerc]

Of course is something simple to say.

So much time in this forum?

[Pooka1]

The Mayo clinic talk.

http://posna.gmetonline.com/Presenta...onpackageid=84

Select 5/13/2011

Talk at 12:36 - Bracing for Adolescent Idiopathic Scoliosis: Determinants of Success

Presented By: William J. Shaughnessy, MD
Co-Authors:
Wendy S. Moon RN
Paper No. 55

In 2 months, this talk will be 2 years old. I am not saying he won't publish it or something based on the talk. This is not my field and it is a very difficult field. I am just saying here is what I gleaned from the 5 minute talk that might constitute reasons for why it might never be published in the peer-reviewed literature. And nobody should assume I would be surprised if it gets published... I am far beyond being surprised at what gets published in this field.

1. Huge data selection issue - only included patients who completed the treatment were included in the results. As I understand this business and I may not, the correct way to crunch this is intent to treat.

2. End point at skeletal maturity. They would not see the rebound that is seen in other studies after the brace is removed.

3. They compared 31 patients braced with the "old" method versus 57 patients braced with the "better" method.

4. Absolutely no mention of if the "successes" largely were the lumbar patients or not. Lumbar curves don't progress as often as thoracic curves. If this is not stated in the manuscript then I think this alone and all by itself should disqualify it from being published.

5. The "better" bracing protocol included at least a 50% reduction of the curve in brace. Yet everyone's favorite bracing study(TM), Katz et al. (2010) showed NO correlation between "success" and in-brace correction. This would need some discussion to say the least.

6. Minimum 3 month follow up though the average follow up was 32 months and ranged from 6 to 98 months. I thought it was known that a few months out of brace is not really the true picture but I don't know that. Then there is the issue of down the road where we know many people were thought to be bracing "successes" only to need fusion. Someone needs to study bracing delaying fusion and if that is good or bad.

7. The "old" bracing regime population had an average curve size that was higher (30*) compared to the "better" bracing regime (26*). This will skew the results to being better for the newer bracing regime because the curves are smaller. Also, I'd like to see all the numbers or at least the median.

8. HUGE(!) error bars! This similar to Katz et al. (2010). In other words, you can follow what the regime was and still the result might be all over the place. It is NOT predictive of outcome.

9. No progression to surgery (how many were in range and refused it?) among patients with initial curve <40* and >15 hours of brace wear per day. Doesn't say how many this is. Could be a only a few given a total study size of 57. He also doesn't say how many non-compliant kids who had a curve <40* also did not progress to surgery. We know separately there is a huge over-treatment rate with bracing so it has to be non-zero I would think.

The bottom line is this is a 5 minute talk and I am very sure he would hit most of the points I raised in a full length article. I may email him to ask if he intends to publish this material.

[rohrer01]

On being obviously different from your peers - I have a son with a obvious kyphotic curve (his scoliosis is not obvious), so I know all about how hard it is for teens to be different from their peers. All medicine could potentially offer us was a fusion which is likely to move his curve up into an untreatable area of his cervical spine. Fortunately none of his doctors thought that was a good idea.. For us, one of those laughable alternative treatments (massage coupled with stretching and strengthening, in our case) completely changed his appearance and his self image.

Your son's scoliosis, like mine, is pretty much untreatable except for pain management. My curves aren't noticeable (in clothing) either. I'm hypokyphotic instead of kyphotic. But really the only things we CAN do for these really high curves are palliative in nature. Massage therapy certainly isn't an ineffective palliative treatment. Stretching and strengthening are certainly not laughable alternative treatments for pain. I've had all of that and more. These are NOT alternative treatments for scoliosis PAIN. They are pain management treatments and are completely legitimate for that purpose. Now used for the purpose of trying to gain curve correction, they would fall into the category of alternative, unproven and likely ineffective treatments. They may work, though, on young kids with certain curve types (probably not the massage, but maybe the stretching and strengthening).

This discussion is about curve correction. Your son's curve may not be as noticeable, but is it better in terms of degrees AND rotation? Has he developed a seconary curve that makes him "look" better? I'm not asking in sarcasm at all. The reason for me asking is because that is exactly what is happening to me. My shoulders are now even because I developed a second curve making me a double major instead of a single major. From a purely asthetic point of view, I look much better. Because my curves are up so high and I'm hypokyphotic, I have a VERY straight posture and stand evenly. Without clothing, though, my back looks quite odd. Some people that have seen it have actually gasped because my upper spine is sunken in so much that it creates a very large hole under my left scapula. Anyway, asthetically with clothes on, I look better. Some people would call that "success". I don't because I'm in more pain.

Why do discussions like this always boil down to bracing or not bracing? Bracing works for some kids and not for others. I think that the researchers and doctors need to get their heads together and IF they are going to brace a child, look more carefully at the progression. If the child is progressing despite the brace, then quit that treatment before the "window" closes. For kids already in that window, they should offer things like VBS or tethering rather than bracing. That would probably eliminate a lot of fusion surgeries and a lot of useless bracing. Hey, I'm just a layperson, so what do I know?

The bracing argument is old and so is the germ theory argument. They just seem to keep reappearing. There are many, many other threads that this is turning into a repeat of.

Pete and Repeat were sitting in a boat. Pete fell out. Who was left? Repeat...
Pete and Repeat were sitting in a boat. Pete fell out. Who was left? Repeat...
.
.
.
for infinity...

[Pooka1]

Why do discussions like this always boil down to bracing or not bracing?

Because every once in a while we get someone claiming there is some study that constitutes good evidence that bracing works. In this most recent example, it is an almost 2 year old, 5-minute talk that still hasn't been published in the peer-reviewed literature. As such, this latest claim was easy to dispel.

What people are missing in making these claims is perspective. Bracing was declared effective few decades ago until researchers realized why those studies were nonsense. This literature is a trainwreck. Despite that, we have thread titles about bracing being shown to be effective, etc. etc. etc. Yet they are easily shot down and we never see BrAIST being halted immediately in response to any of these supposed knock-down studies. In a clinical trial where all the people in the treatment group were improving and nobody in the non-treatment control group were getting better, they would halt the trial and give everyone the treatment. This has happened. Yet that is NOT happening in BrAIST. People should ponder that before claiming there is good evidence bracing works.

Perspective always.

I wish there was a requirement to show ALL data points instead of binning the data. I suspect if Katz et al.. (2010) did that, we wouldn't be talking about that study much. It would become very clear very fast that you can't predict outcome from bracing both from the perspective of over-treatment and the inherent variable response to treatment.

[rohrer01]

Because every once in a while we get someone claiming there is some study that constitutes good evidence that bracing works. In this most recent example, it is an almost 2 year old, 5-minute talk that still hasn't been published in the peer-reviewed literature. As such, this latest claim was easy to dispel.

Perspective always.

Yes, I know this. You made a reference to that thread. It's not you. Others are doing the rehash, too, and you are giving the counter argument. So, this whole "Western Medicine" bashing thread shouldn't boil down to the old bracing argument. Pretty soon there's going to be someone on here arguing the germ theory, too.

What I haven't seen done, and I'm waiting for Flerc to still clarify, is what constitutes "Western Medicine". That's what this whole thing was supposed to be about. Where's the line in the sand, so to speak, that distinguishes "Western Medicine" from _______________? I leave that blank because which alternative treatments don't fall into the category of the Western Medical Community? As far as I'm concerned, ALL of the stuff that has been discussed and argued falls within a global community of researchers and practitioners. Flerc has made his demands, but still hasn't drawn the line in the sand as to what he's talking about. We should know what medical community Flerc is making his comparison to. Bracing falls within the realm of the Western Medical Community as far as I can tell, yet there's no argument against it coming from the OP. He's waiting for demands to be met and I'm waiting for clarification. He says Hdugger "gets it", but I haven't seen anything here except the same monotinous arguments.

This topic is way too broad and boils down to ethics. Where's the ethics committee?

[flerc]

As I said you many times before, you will never understand what I said here, which was my purpose and it have not any sense we continues talking at least in this thread. But anyway as you insist I must to say that in this thread I was not questioning the OFFICIAL (traditional is better?) Western Medicine COMUNITY (you forgot 2 words). If you have read the large thread I quoted you, it should to be really clear for you at least what I think it is.. and certainly the ‘definition’ I gave you of the OWMC in this thread should be enough to understand what I was saying and why I opened this thread, but again, you will never understand it and even if would have time to try it, I’m not able to explain you in a way different of all I explained you before.
You may believe I’m waiting for demands to be met if you want. Certainly for me is now mainly a brace thread. So I will talk about braces, ok?


It seems to be out of discussion here the evidence saying VBS works. I don’t know much about it but I remember it was called the internal brace. Is not crazy then to suppose both are following the same principle. I think VBS apply forces in order to align vertebral bodies. So I believe there is evidence saying that principle works.
I always read about the scoliosis vicious cycle and of course, it’s broken or close when holding the spine straight (I suppose is what VBS also does).
But I believe the Hueter-Volkmann law is not all. Certainly I think that if would not be true, anyway the curve will increase (surely lesser) until something redirects it.
I cannot be sure but anyway I am, that if in a magic way the normal vertebras shape would be restored, the curve would be reduced but not at all, I think that not in a great percentage.. muscles, ligaments, fascias, tendons, nerves, ribs, discs, organs, joints.. would remains altered and certainly the spine is not a large an unique bone.
Redirecting the growth force obviously should to be something good, probably not enough, but nobody says that braces cannot be combined with other methods following other principles. Obviously, something cannot not be considered useless if cannot work alone. Boxing alone may be a not much effective martial art, but is impossible (at least up to now) to imagine the MMA (Mixed Martial Arts) without the boxing practice.

There are physical reasons saying that a growing curve line, tends to grow more curve if forces are applied in the extremes and of course is what happens with the spine of someone having a frontal curve. Probably was not something obvious a half millennium ago (sure the Hueter-Volkmann law was unknown) when a surgeon designed the first brace.
But certainly regardless if Hueter-Volkmann law is the only reason or not, I believe I’m not mistaken saying there is evidence that the principle behind braces works!
But braces seems cannot apply a direct force in vertebral bodies as VBS does.. at least braces applying forces only in ribs. And certainly it seems obvious a risk of ribs deformation. What if the thoracic box is growing and the brace comprises it?
So the claim should to be for best braces, not for brace abolish, at least until VBS exists in every country and will not be doubts about non secondary effects, risks..
Why cannot be designed a brace redirecting the curve without (only?) pulling the ribs?
I don’t know much about braces, but I believe the Milwaukee seems to was in this direction.. but not exactly. Why cannot be designed a brace pulling up the spine without a (big) force applied to ribs?
We live in the 21 century. Someone may say something is impossible?

[Pooka1]

So Fer, what's your opinion of the 5 minute POSNA talk? Does it convince you that bracing works? Should it convince anyone that bracing works?

[flerc]

Sorry, I'm unable to seeing videos now. But please, copy the part when they talk about braces used under ALL the right conditions.

[flerc]

Why cannot be designed a brace pulling up the spine without a (big) force applied to ribs?
We live in the 21 century. Someone may say something is impossible?

And certainly..do you believe or someone here is something impossible?