Does Bracing Work?

[Pooka1]

Thanks macky.

I have come to understand that scoliosis is a particularly tough nut to crack. It certainly seems at this point that a good study is exceedingly hard to do. I have cut these researchers some slack on that lately. They still don't get a pass on obvious stuff but they get some latitude if they reel their conclusions in sufficiently.

In re Danielson, we have to ask... did they only start with these people in the graph or are those the only people they could track down? I suggest it is the latter which is raising data selection to a zen art.

Last, like a broken record, I am sitting here with IDENTICAL twins who have different scoliosises-es-es. Both right T curves but one curved very quickly and was highly rotated early while the other curved more slowly and has almost no rotation.

Until we get a handle on things like that, the ability to predict scoliosis trajectories is always going to be limited.

[michele27]

I don't think concerned dad tries to confuse people at all. I really appreciate all the research he provides on these forums to help us make informed decisions. Everyone's experiences with scoliosis are different in one way or another. Anyone who braced effectively with no further progression would argue that bracing does work. While I wouldn't think surgery would be the end of the world for my daughter, I certainly would love to avoid it if possible, simply because of the risks that all surgeries carry. Bracing may or may not work for my child, but unless a doctor can flat out tell me that "yes, no matter how we treat your daughter, she will still need surgery", then I will at least give it a go. That's just me, though. To each his own. Anyway, concerned dad and pooka1...I find your posts and debates very informative, so please carry on!

PS
CD, I like the baby aspirin/heart attack analogy!

[AILEA]

I only want to share with you my personal thoughts; I don’t think you can’t absolutely claim that brace doesn’t wok, and that curves will progress despite years of bracing, and this is what I understand reading some of the post here.
I agree, surgery is not the end of the world, but most of us are going to do everything we can to avoid it. One of those things is bracing, and bracing is not the end of the world.
My dd has been wearing a Cheneau for several years now, and it seems to be working, unless at the moment. I wish the results are for ever, but I know there it is the possibility of her curves progressing in the future.
So, regarding my daughter results I can’t not claim that bracing works (yet), but regarding people I know(a lot of people I have met in all this years) who wore braces when where young, yes, sometimes, bracing works, why not give bracing a chance?

[Pooka1]

Nobody has claimed braces can't work. We just don't know if they can work.

The problem is that you can't know if the braces worked because some curves won't progress even doing nothing. If a person has that type of curve but happens to be wearing a brace, the brace is credited with stopping the curve. Potentially everyone who wears a brace whose curve stops would have seen their curve stop even if they didn't wear a brace.

That's why controlled studies are needed.

[concerned dad]

I get so darn sick and tired of people on these forums confusing young people to the extent that they do not have any idea at all what is the right thing to do because of all the conflicting messages.

Pookah1 I so agree with you, so admire you, and so many others but please concerned dad there is proof from people on these forums that bracing does not work

Well Macky, you’ve certainly given me something to think about. The last thing I am trying to do is confuse young people. You note the conflicting messages, without my voice there would be less “conflict” and more acceptance of statements such as the one you made above “there is proof from people on these forums that bracing does not work” I try to be respectful and explore these issues from a scientific rather than emotional viewpoint.

Sharon, Pam and others are on guard, so to speak, for ridiculous claims made by non-traditional approaches to scoliosis treatment. Without them you would have people coming here hawking tea leaves and Vitamin D injections for the treatment of scoliosis. And there are clear-cut arguments to be made against whacky claims for “conservative” treatments. But bracing is another “conservative” treatment and there are a lot of people here on this forum giving it a shot. I have been trying to look at, learn, understand, and share discussions about what the scientific literature says about bracing. I have taken issue with (hopefully, respectfully) some of Sharons statements concerning the quality of the bracing research (and we’ll get back to the Fig 1 soon). Might these discussions ‘confuse’ young people here? Perhaps yes. If so, I am sure that between all of us we can try to clarify any of the issues we’re discussing. I am not so much concerned about ‘confusing’ young people here as I am about ‘discouraging’ young people here. And I think it would be easy to misconstrue some of the bracing research such that it seems discouraging. (And I am not saying that Sharon is misconstruing anything, perhaps that’s not the best choice of words.) But when Sharon says ” I have cut these researchers some slack on that lately. They still don't get a pass on obvious stuff but they get some latitude if they reel their conclusions in sufficiently.” Is it perhaps fair to say that our discussions have, at least, allowed us all to pause and rethink some issues.

I am not trying to paint a rosier picture on bracing than actually exists (indeed I was looking forward to some discussion about Coillards 22.9% and Dolans 22% ultimate surgery #’s).

I’m not sure if there are any young people following these discussions, but if there are, it would be nice if the discussion motivated them to learn about the science behind it. It is not trivial but it is not rocket science. It calls for an appreciation and understanding of the scientific method first and foremost. Something kids should be introduced to in grade school. If any of them are confused about this stuff, just join in the conversation.

Finally Macky, in the interest of not confusing or discouraging any young braced kids here, I have to take issue with your statement: “there is proof from people on these forums that bracing does not work”.Just because there are people on these forums who were braced as children and still needed surgery, it is not “proof” bracing does not work. The scientific data shows that 22% of people who are braced will go on to have surgery (just like a baby aspirin will not guarantee you escaping a second heart attack). I wouldn’t be a bit surprised to find that the vast majority of people who have had surgery were braced as a child. I guess I would expect it. The question is, what about the other 78% of people who were braced who DID NOT have surgery? You won’t find those folks on the surgery threads. And the whole point of this particular thread is what happened (and what would have happened) to those other 78% of the people who were braced but didn’t need surgery.

Dr. Dolan notes that we don’t know if any of them would have needed surgery even if they were not braced. That’s one definition (the need for surgery) to measure if bracing ‘works”.

I suggest that the Danielson data (for one) suggest that those 78% ended up with a smaller curvature (on average) than they would have if they were not braced. That’s another way to measure if bracing ‘works’.

By one measure we can say “we don’t know if bracing works”
By the other measure we can say “bracing works”

My main criticism of the Dolan data (criticism of the data, not Dr Dolan) is that there are 1953 total patients and only 139 of them were in the observation group. That’s just 7%. Is it surprising the results showed that we don’t know if bracing works to reduce the incidence of surgery?

Confusing? Perhaps
Discouraging? I hope not
Amateur analysis? Definitely

Few final comments.
Sharon - regarding the number of patients available for follow up in the Danielson paper – These were the patients from Sweden. They say that there is “very good opportunities offered by the Swedish healthcare system to retrieve patients for follow-up. They found 87% of the original Swedish patients and all of them came in for xrays.

Michele27 – Thank you

AILEA - I would be curious to hear why your daughter switched away from the SpineCor. Maybe you could reply here or perhaps more appropriately at the end of the “Why I decided to brace my Daughter with the Spinecor” thread.

Sharon, Re the controlled study, Danielson’s paper discusses the results from a controlled study. 15 years after bracing stopped. Two centers in Sweden, one braced, the other observed. 87% available for follow up. Published within the last 2 years. Why do you dismiss this? They are not making any wild claims.

Everyone - we are talking about bracing statistically "working". YMMV (Your mileage may vary)

[Pooka1]

The last thing I am trying to do is confuse young people.

If people are confused it's not due to anything you wrote.

I have taken issue with (hopefully, respectfully) some of Sharon's statements concerning the quality of the bracing research

That's fine. I wish more people would comment on these matters.

Might these discussions ‘confuse’ young people here? Perhaps yes. If so, I am sure that between all of us we can try to clarify any of the issues we’re discussing.

Concur.

I’m not sure if there are any young people following these discussions, but if there are, it would be nice if the discussion motivated them to learn about the science behind it. It is not trivial but it is not rocket science. It calls for an appreciation and understanding of the scientific method first and foremost. Something kids should be introduced to in grade school. If any of them are confused about this stuff, just join in the conversation.

Absolutely.

Few final comments.
Sharon - regarding the number of patients available for follow up in the Danielson paper – These were the patients from Sweden. They say that there is “very good opportunities offered by the Swedish healthcare system to retrieve patients for follow-up. They found 87% of the original Swedish patients and all of them came in for xrays.

and...

Sharon, Re the controlled study, Danielson’s paper discusses the results from a controlled study. 15 years after bracing stopped. Two centers in Sweden, one braced, the other observed. 87% available for follow up. Published within the last 2 years. Why do you dismiss this? They are not making any wild claims.

Is this paper on line somewhere? I can't find it.

[concerned dad]

That figure has no business being published without error bars period.

OK, well perhaps I should be the one dope slapped. Journals have requirements for reporting statistical data. As Sharon points out, it is important to understand the strength of an argument. Apparently this journal doesn’t require error bars. But they do apparently require a textual description of the statistics. I neglected to include it in my screen capture of the Figure. In my attempt to honor copyrights I did a disservice to the authors.

Here it is:

Figure 1 depicts the change in curve size from inclusion until the present follow-up in the initially braced group (0.4°, SD 7.0°), the group who were brace treated after progression 11.2° (5°–17°, SD 4.1°, P_0.0001 vs. braced patients) and the patients who were only observed throughout 5.8° (SD 5.7°, P _ 0.0011 vs. braced patients).

Now, I am certain that the 0.4 degree, SD 7.0 degree is a typo. (0.4 should read 4.0 and we can see this error right from reading the graph). I don’t think it is important enough to warrant a corrigendum (although that would be cool if CD got the Journal Spine to publish a correction). However, if that number (0.4) was used erroneously in the P calculations it certainly would warrant a corrigendum (the smaller the P value, the more significant the results, and these P’s are very very small). I’m pretty sure that all we need to calculate it is the sample size, the SD or the variance, the mean and someone smarter than myself. Anyway, I’m going to leave that for now.

Danielson goes on to say:

The differences in curve magnitude between the 2 original groups, bracing or observation at inclusion, at maturity and at the present follow-up 16 years after maturity were all statistically significant, even if they were within the measurement error.31–34

OK, well here is my mistake. I said earlier that if they were to plot error bars on Figure 1 they should be plotting the standard deviation of the mean. However, I took the standard deviation as the measurement error. The standard deviation is the variability of the curves for a particular group, not the accuracy with which we can measure them. So, instead of using 5/sqrt (N), it should be SD/sqrt(N). Fortunately it doesn’t matter too much because the three SD’s reported are close to the 5 degree measurement error I erroneously used.

It is interesting that they say all statistically significant, even if they were within the measurement error.31–34 I cant get those references, but here is 34:
Morrissy RT, Goldsmith GS, Hall EC, et al. Measurement of the Cobb angle on radiographs of patients who have scoliosis: evaluation of intrinsic error.
J Bone Joint Surg Am 1990;72:320–7.

Why still significant if within the measurement error? I guess we’ll have to take them at their word for now.

I don’t see anyplace this paper is available on line other than the abstract.

So what do you say Sharon? Any good with p values? We could be famous.
"Pooka1 and CD correct error in Spine Paper that escaped 6 orthopedic surgeon peer reviewers" Of course, the key is not just a typo, but them actually using that number to calculate significance.

[Pooka1]

It is interesting that they say all statistically significant, even if they were within the measurement error.31–34

I don't understand this. I would need to run this past a friend of mine who can explain it if it is correct.

It is not clear to me how they handled the measurement precision and the error about the mean.

We still need to know the distributions of the types of curves in each group and make sure they are similar (i.e., no stacking).

[christine2]

Concerned dad

I enjoy reading the info that is presented here. I have learned alot. It is also an inspiration to me not lay complacent but to be proactive and as informed as possible about my daughters scoliosis. I think that young people are being presented with information that is important for them to understand the science behind the choices that their parents are making about their treatment. There is so much negative out there but this discussion is giving us 2 sides (not 1 side) of the story. Keep it up!
I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stiffled or down right put down or insulted. A 13 year old girl tryed to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter.


Finally, I have chosen to try bracing with my daughter. Right or wrong I don't know but I feel good about the decisions we have made. I would like to point out that one reason there may not be a large # of bracing success storys on this forum is because there is no need for them to be here. They do not need to search for the info anymore. Frankly after a couple years into this adventure and some very good results I backed off of reading and posting ?'s here. The only reason I still come is because I need to stay informed until that marvoulous day that we will have a definate prognosis.

[christine2]

Concerned Dad

1 more thing. There is research being done at St Justines to develope a test for progression as well. It has been in the works for a while I remember reading about it a year or so back and heard that it may be availible soon. Did you hear about this. I think you said you were going back for a re check this month, can you ask Dr Rivard about it for us?

[Pooka1]

There is so much negative out there but this discussion is giving us 2 sides (not 1 side) of the story. Keep it up!

Negative? Two sides?

There is good science and there is everything else. So I guess that's technically "two" sides but only one counts.

I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stifled or down right put down or insulted. A 13 year old girl tried to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter.

Speaking for myself, I meant folks who read these papers and/or have a background in science who can contribute. For example, we are in dire need of a statistician at the moment.

[christine2]

Yes 2 sides. Yours and concerned dads. As I said before both sides help us parents make informed decisions.

[Pooka1]

CD and I are on the same side... trying to understand the literature on this.

CD and I have our thoughts and feelings about the studies. But the studies themselves stand or fall on their own merit.

There is a reason the experts are scattered all over the map on the efficacy of bracing. And that reason stands irrespective of what CD or I think.

[christine2]

Yes you are on the same side trying to decifer the stats. But you have seperate opinions on bracing. That is why I read on. I am better able to understand the papers when presented in laymans terms.

[macky]

Ha. ha just loved the answers and all the wonderful people who replied.

Concerned dad you are not by any means confusing the young, you are putting it all out there for decisions to be made. Some others do though.

Yes, lay mans terms would be good for explaining it to those making decisions, I think its great for all the research going on too.
There are a lot of forums on the internet about scoliosis and bracing and a lot of opinions are similar to my own.

But I havent got my head stuck in the sand really I havent (ha!) but I just have this little niggle that for curves over 40 degrees well they can only be fixed and stopped by operations.

My thoughts, and my thoughts alone though.

Keep on keeping on guys I love reading the posts,
Macky xx