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concerned dad
05-09-2009, 04:01 PM
Swimmergirlmom posted a link to one of the abstracts for this years SOSORT conference in response to a discussion in another thread.

All the abstracts are posted on the SOSORT website here (http://www.sosort-lyon.net/index.php?option=com_content&view=article&id=44&Itemid=53&027c4f3fe0cb939c1d912209eb16c9da=27de38c04206ead8c e25104a4b0b99b8). I thought this deserved its' own thread. Lots of talks will be given in a couple of weeks related to things we've batted around here (Adult Spinecor, Genetics, Melatonin, .....)

Of interest to me was the abstract from Lori Dolan about Braist status to be followed by a scathing rebuttal from Weiss. That would be an interesting way to spend a morning (followed of course by an afternoon sipping some good french wine).

Dingo
05-09-2009, 04:09 PM
Thanks for the heads up.

I scrolled to the study link page (http://www.sosort-lyon.net/index.php?option=com_content&view=article&id=44&Itemid=53&027c4f3fe0cb939c1d912209eb16c9da=27de38c04206ead8c e25104a4b0b99b8) and found this.

Age variations of melatonin level and its hormesis; implications for AIS and osteoporosis. (http://www.sosort-lyon.net/pdf/saa11.pdf?027c4f3fe0cb939c1d912209eb16c9da=27de38c 04206ead8ce25104a4b0b99b8)


Discussion: It is documented the bone-protecting effect of melatonin in ovariectomized rats which can depend in part on the free radical scavenging properties of melatonin. Additionally, melatonin may impair development of osteopenia associated with senescence by improving non-rapid eye movement sleep and restoring GH secretion. Whether modulation of melatonin blood levels can be used as a novel mode of therapy for scoliosis and augmenting bone mass in diseases deserves to be studied.

It references another study that indicates that Melatonin appears to strengthen bones.

Melatonin effects on bone: experimental facts and clinical perspectives (http://www.ncbi.nlm.nih.gov/pubmed/12562498)

And that goes full circle back to this thread.

Recent study on Melatonin and Scoliosis (http://www.scoliosis.org/forum/showthread.php?t=8637)

As an aside my son has two sets of black out curtains on his window and no nightlight. At night his room is as dark as a cave.

concerned dad
05-09-2009, 04:22 PM
Another controversial talk will be the one by the Axial bio folks saying bracing doesnt work. (http://www.sosort-lyon.net/pdf/saa1.pdf?027c4f3fe0cb939c1d912209eb16c9da=27de38c0 4206ead8ce25104a4b0b99b8)

Anyone care to comment on their abstract?

It looks like they have already responded to some comments on their talk. (on the last page of the link)

Pooka1
05-09-2009, 04:36 PM
Another controversial talk will be the one by the Axial bio folks saying bracing doesnt work. (http://www.sosort-lyon.net/pdf/saa1.pdf?027c4f3fe0cb939c1d912209eb16c9da=27de38c0 4206ead8ce25104a4b0b99b8)

Anyone care to comment on their abstract?

It looks like they have already responded to some comments on their talk. (on the last page of the link)

Note their comment about MZ twins...(emphasis added)

"Your two questions are very important. Monozygotic twins are a "birth defect" occurring in the first two weeks of gestation. Depending on the age of the embryo at cleavage, allocation of blastomeres, availability of cytoplasmic components, reorientation of one twins' three major axes and subsequent timing differences in establishment of the other two axes and vagaries of placental circulation, when considering midline disorders such as scoliosis, monozygotic twins are an uncertain research model. AIS is a disorder with strong genetic determinants including the ability to predict curve progression which occurs outside of the intra-uterine environment."

This is consistent with the observation that MZ twins can have radically different curve particulars (magnitude, rate of curvature, etc.)

mamamax
05-09-2009, 05:48 PM
Swimmergirlmom posted a link to one of the abstracts for this years SOSORT conference in response to a discussion in another thread.

All the abstracts are posted on the SOSORT website here (http://www.sosort-lyon.net/index.php?option=com_content&view=article&id=44&Itemid=53&027c4f3fe0cb939c1d912209eb16c9da=27de38c04206ead8c e25104a4b0b99b8). I thought this deserved its' own thread. Lots of talks will be given in a couple of weeks related to things we've batted around here (Adult Spinecor, Genetics, Melatonin, .....)

Of interest to me was the abstract from Lori Dolan about Braist status to be followed by a scathing rebuttal from Weiss. That would be an interesting way to spend a morning (followed of course by an afternoon sipping some good french wine).

I cannot get the file: Kyphosis: Physiotherapy & bracing to open CD - can you? It's a zip file, and when i open it its all hieroglyphics.

Dingo
05-09-2009, 08:28 PM
Another controversial talk will be the one by the Axial bio folks saying bracing doesnt work.

That sounds financially motivated. I would guess from that statement that they are doing research on a therapy that competes with bracing.

Don't get me wrong, more power to em! I hope they continue their research. But I smell shenanigans.

Pooka1
05-09-2009, 09:16 PM
That sounds financially motivated. I would guess from that statement that they are doing research on a therapy that competes with bracing.

Don't get me wrong, more power to em! I hope they continue their research. But I smell shenanigans.

Beyond the Scoliscore guys, some large percentage of orthopedic surgeons will sit there and tell you bracing has not been show to work and in fact don't prescribe bracing. And these guys don't get sued (successfully) for malpractice. At this point, I think we can safely assume that when folks say bracing is unproven, they are correct, medically AND legally.

swimmergirlsmom
05-09-2009, 09:58 PM
I cannot get the file: Kyphosis: Physiotherapy & bracing to open CD - can you? It's a zip file, and when i open it its all hieroglyphics.

Hi Mamamax
I am able to open the Kyphosis: Physiotherapy & bracing file.
Try this: Click on the link on the SOSORT site. When the pop up asks "Do you want to Open or Save this file?", choose "Save".
Then go to where you saved the download on your computer and double click on the Zip folder - inside that folder will be an excel document. I was able to open the excel document by double clicking from there.
The document seems to have multiple tabs that give the results of how different health care professionals answered a bunch of questions related to physiotherapy & bracing.
If you don't have Microsoft Excel, then I'm not sure how you can open the file but then hopefully someone else will know how. :)
Good luck!

Dingo
05-09-2009, 11:44 PM
Pooka1


And these guys don't get sued (successfully) for malpractice. At this point, I think we can safely assume that when folks say bracing is unproven, they are correct, medically AND legally.

Clearly I don't buy that but you are entitled to your own opinion.

Pooka1
05-10-2009, 08:11 AM
Clearly I don't buy that but you are entitled to your own opinion.

Can I just ask which part you don't buy?

That there are many surgeons out there who don't brace?

That these surgeons are never sued successfully for malpractice for not prescribing bracing?

What?

How do you suppose the BRAIST study can ethically go forward as we type with an observation group? There are panels of people who vet the ethics of every medical trial. Do you also disagree with all those people who let the study go forward?

Is watching and waiting ethical in your opinion?

We happened to run into two surgeons who don't think bracing has been shown to work. What are the odds of that? They must be more numerous than folks think.

concerned dad
05-10-2009, 08:54 AM
Sharon, I dont buy the part about the absence of lawsuits being used as a line of evidence regarding bracing efficacy.
(but I do buy the fact that the very existence of the Braist trial is evidence we dont know one way or the other - evidence, not proof)

Dingo, I dont think the paper was financially motivated, if anything, the opposite is true. The guys who wrote the paper want to sell a test to assess curve progression risk. Why take the test if there is nothing you can do except wait and worry. The test is much more valuable if there is something you can do after getting a bad test result (P said this in the axial thread i think)

Sharon, I thought you would like the comments in the paper about the problems with twin studies as they agreed with what you have been saying all along.
Unfortunately, you have to realize most published results are false
:D

Swimmergirlsmom and mamamax, that spreadsheet probably shouldnt even be there. It gives the response of individuals to the census questions (by name). I can see posting colated results, but I think this was a mistake to give names and their responses.
Of course, I would love to see the individual responses from the Equipoise survey (recall that 2 respondents said bracing in all cases would have a worse outcome than watching - I think she excluded those from the study figuring they interpreted the question wrong)

LindaRacine
05-10-2009, 01:47 PM
Hi Sharon....

I've not seen evidence of scoliosis specialists not bracing, although I'm sure there are a few. Is there any evidence that there are many?

--Linda

Pooka1
05-10-2009, 01:49 PM
Sharon, I dont buy the part about the absence of lawsuits being used as a line of evidence regarding bracing efficacy.
(but I do buy the fact that the very existence of the Braist trial is evidence we dont know one way or the other - evidence, not proof)

That's interesting because I view the continued presence of several orthopedic surgeons who don't brace as proof they are not being sued out of existence for malpractice. That is the strongest proof I can imagine for the lack of efficacy of bracing, much stronger than the BRAIST study which is good evidence but really just probably one panel (maybe more) of ethicists.


Sharon, I thought you would like the comments in the paper about the problems with twin studies as they agreed with what you have been saying all along.
Unfortunately, you have to realize most published results are false
:D

I know! I have to stop believing everything I read. Thanks for calmly talking me off the ledge (again). :eek::D:cool:

Pooka1
05-10-2009, 02:00 PM
Hi Sharon....

I've not seen evidence of scoliosis specialists not bracing, although I'm sure there are a few. Is there any evidence that there are many?

--Linda

I haven't researched it per se.

I can say that the one surgeon we were referred to by the pediatrician doesn't brace and told me there is no good evidence bracing works. And the other who said he didn't brace until recently when he saw some data on the Charleston. The data I've seen do not purport that the Charleston is likely to work in any given case so I will have to ask him which papers he thinks look promising. I think he just thinks it's worth a shot and not too odious as a night-time only brace. We got no guarantees about the brace helping my daughter to avoid surgery. My feeling is my daughter could stop wearing it with a clean conscience based on the papers I've seen.

The other thing is I saw a video of a Scoliosis meeting where the presenter did a show of hands asking the surgeons/researchers if they thought bracing worked or if we don't know if it works or something like that. Several hands went up for the no proof it works question though it didn't look like the majority.

But to the others I ask where is the proof? I think they are just being hopeful or responding to if they "think" versus "know" it works. Who knows.

There is some reason the BRAIST observation group got past the ethicists. That reason is because the jury is out on bracing. I'd like to get a show of hands from those same guys about that.

concerned dad
05-10-2009, 02:05 PM
Hi Sharon....

I've not seen evidence of scoliosis specialists not bracing, although I'm sure there are a few. Is there any evidence that there are many?

--Linda

If you are a participating physician in the Braist study you are not bracing half your patients
(well, less than half because you have patients not participating in the study)
and there are more than a few participating centers.

concerned dad
05-10-2009, 02:09 PM
Thanks for calmly talking me off the ledge (again). :eek::D:cool:

Check out this video (http://www.youtube.com/watch?v=4vsdtCuXS_I)(at least the first 35 seconds)

Pooka1
05-10-2009, 02:20 PM
Check out this video (http://www.youtube.com/watch?v=4vsdtCuXS_I)(at least the first 35 seconds)

Yes! Exactly how I feel! :D

Pooka1
05-10-2009, 02:52 PM
If you are a participating physician in the Braist study you are not bracing half your patients
(well, less than half because you have patients not participating in the study)
and there are more than a few participating centers.

Plus there are some surgeons who won't brace and therefore can't participate in the study.

I can name one and could have named two until recently.

concerned dad
05-11-2009, 12:50 PM
Hi Sharon....

I've not seen evidence of scoliosis specialists not bracing, although I'm sure there are a few. Is there any evidence that there are many?

--Linda

Thinking this over further, I dont believe there are many physicians who dont brace at all (it is possible that Sharons 1 is the only one).

I bet it is more along the lines of some have different criteria for bracing, but I guess we would find very few who NEVER brace under any circumstances.

So, my initial reply to Linda interpreted her question incorrectly. Sure, the Braist guys dont brace SOME patients. I bet ALL SRS doctors have patients they dont brace (ie, curve too small or too big, age too old). The question is though, how many NEVER brace.

Sharon, you imply that there are several with your lawsuit comment. Now I'm wondering along with Linda, just how many?

Pooka1
05-11-2009, 01:04 PM
Thinking this over further, I dont believe there are many physicians who dont brace at all (it is possible that Sharons 1 is the only one).

Possible but not very likely that I ran into the only one, yes?

We saw him twice before being referred to the second surgeon. I think both my girls were in bracing range yet we just did observation because he does brace as far as I know. I asked about bracing and he told me there is no good evidence bracing works or he didn't believe bracing works or something along those lines.

And the second surgeon specifically told me he never braced until the recent data on the Charleston. Yet I know from another forum member here that he has prescribed at least one TSLO brace very recently. So I would say he meant he very RARELY braces until recently, too rare to mention. I'm guessing this other forum member was some special/unusual case given his comments about not bracing until recently.

I have gotten the impression he is willing to try with the Charleston because the kids don't have to wear it during the day.

I might buttonhole him in this at the next visit.

Ballet Mom
05-11-2009, 03:21 PM
I have had my daughter see three excellent orthopedic surgeons since my daughter was diagnosed. They all come highly credentialed. But I have to say as a parent seeking treatment, you have to be very careful what you say, because the surgeons are listening to what you say and will respond to what your feelings are on bracing. They are trying to help you and your child, and since it’s obviously not a cut and dried outcome on these braces and daytime bracing especially very difficult to use, they will ask you what it is you want to do. I am quite sure that if you show an inclination to not brace, they will use the fact that bracing is not specifically proven to make you feel better about your decision and because I’m sure a child needs the family’s support to successfully use the brace.

I can’t imagine that any attorney would be able to prove negligence what with the data as it stands on reliability of bracing studies. A good attorney for the doctor/hospital could make mincemeat of it. It is unpredictable what is going to happen in any given situation with a brace, the data just isn’t there yet, and maybe never will be. Plus most of these doctors have those lawsuit waivers you must sign initially to be seen anyway.

In fact, the second surgeon I saw is a very respected surgeon at a major children’s hospital and I wouldn’t hesitate, even at this point, to go to him if my daughter needed surgery while she was still within the age range, but his physician’s assistant told me that the doctor was starting to believe that bracing didn’t help, that it was just a genetic determination as to where you would end up. (He is involved with that DNA testing). Now, I don’t buy that from my experience, but if he spends most of his time on the most difficult surgeries, he may not have had the time to find the right orthotists to use to get good brace results. But God bless him that he is able to be the fantastic surgeon that he is and helping out all these really difficult cases. But I ran like heck from him when I heard that and am now seeing another children’s hospital scoliosis director, who was recommended by my daughter’s orthotist, who believes in bracing and is getting very good results with it. Yes, I call lots of people trying to find information. : )

concerned dad
05-11-2009, 04:01 PM
Ballet Mom, I'd have to agree with most everything you said.

I guess I'm a bit confused/unclear why you ran like heck from the 2nd doctor? Was it because of the DNA testing or was it because he admitted that he was having second thoughts on bracing efficacy?

It's just that, well, our 4th doctor mentioned the genetic testing thing to us and he also explained that he believes the medical community does Not Know if bracing reduces the need for surgery. He didnt say it didnt, he just said they didnt know.

So, I suppose, we could be seeing the doctor you ran like heck from.
:confused:

Pooka1
05-11-2009, 04:13 PM
I have had my daughter see three excellent orthopedic surgeons since my daughter was diagnosed. They all come highly credentialed. But I have to say as a parent seeking treatment, you have to be very careful what you say, because the surgeons are listening to what you say and will respond to what your feelings are on bracing.

I agree. That's why some folks say that bracing is for the parents so they feel they are doing something.

I came into the first surgeon as a blank slate. I had done nothing at that point by way of research other than I knew about bracing and surgery. I didn't realize there was the third option until he said we would observe the curves and return for new radiographs in 6 months. That was shocking at the time. He said he didn't think there was enough evidence that bracing worked to subject kids to it. I had to take his word on that at the time but have since looked at the literature and realize why he said that.


They are trying to help you and your child, and since it’s obviously not a cut and dried outcome on these braces and daytime bracing especially very difficult to use, they will ask you what it is you want to do. I am quite sure that if you show an inclination to not brace, they will use the fact that bracing is not specifically proven to make you feel better about your decision and because I’m sure a child needs the family’s support to successfully use the brace.

Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.

Now the opposite is NOT true... I think PLENTY of parents are unwilling to watch and wait and want to feel like they are doing something, anything. I suggest some kids are braced ENTIRELY for that reason, no other.

By the time we were referred to the second surgeon, I still didn't have a clear idea about what the literature had to say about bracing so I just went along with the Charleston. Since then, I have read up and have told my daughter she can lose the brace if she likes.

If I had known now what I new then, I would be asking several more questions about the Charleston before agreeing to get it and exactly which data changed the surgeon's mind to think it was worth trying. I have yet to come across a paper that justifies wearing the brace, even at night. Life is short.

Pooka1
05-11-2009, 04:17 PM
It's just that, well, our 4th doctor mentioned the genetic testing thing to us and he also explained that he believes the medical community does Not Know if bracing reduces the need for surgery. He didnt say it didnt, he just said they didnt know.

I would run like heck from a surgeon who claimed he KNEW bracing didn't work.

It is very clear that the jury is still out and that it might be shown to work in certain cases.

Both guys we have dealt, one until recently who started using the Charleston seemingly on hope alone, said bracing hasn't been shown to work to date. That is a true statement. Both guys are reasonable and rational on the bracing issue though I have to ask about the Charleston literature from the second.

And I have to wonder why the BRAIST study and every other bracing study isn't stopped yesterday and everyone put in a Charleston if that has been shown to work.

The answer is it looks promising but still no proof is my guess for how our surgeon will respond.

Dingo
05-11-2009, 04:21 PM
Ballet Mom


his physician’s assistant told me that the doctor was starting to believe that bracing didn’t help, that it was just a genetic determination as to where you would end up.

In a sense that is true. There are probably some kids with severe cases that will not be helped by bracing under any circumstances. But the weight of evidence suggests that braces, although unpleasant will help many kids.

mamandcrm
05-11-2009, 04:35 PM
[/QUOTE] Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.[/QUOTE]

Actually, I think there is a subset of parents new to scoliosis who will not brace their children because they do not believe it is a tolerable state of existence (not passing judgment on that one way or the other on that, just stating), whether it works or not. It's just something they will not subject their kids to.

Pooka1
05-11-2009, 04:41 PM
Sharon said: Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.

Actually, I think there is a subset of parents new to scoliosis who will not brace their children because they do not believe it is a tolerable state of existence (not passing judgment on that one way or the other on that, just stating), whether it works or not. It's just something they will not subject their kids to.

I think you have to make a distinction between JIS and AIS.

I agree it is rational to avoid years of bracing in the case of JIS even if you could show it worked every time to avoid surgery.

Of course as it stands now, it seems far more likely they are avoiding bracing because it hasn't been shown to work, not because they think it is intolerable..

concerned dad
05-11-2009, 04:58 PM
I remember the utter shock I had when I realized there was even a question about bracing efficacy. I assumed it was a proven treatment.

Dingo, you still have some reading to do.....

But the weight of evidence suggests that braces, although unpleasant will help many kids.

I used to buy this, I dont anymore (but I may change my mind yet again if some evidence/data can convince me). If the weight of the evidence were that strong, there wouldnt be a Random Trial underway right now. I am sorry to say that there is just as much evidence to say that it doesnt help many kids. (OMG, I am sounding like Sharon :eek:)

I've tried to poke holes in the argument, so far without success. The closest I've been able to come is the difference in surgical rates between the SOSORT guys and the SRS guys.

mamandcrm
05-11-2009, 05:10 PM
I agree with CD and Sharon that the research support for the efficacy of bracing for the general population of kids with scoliosis is dodgy at best. What nags at me is that my gut instinct is that bracing may works for subsets of subsets of kids (and some subsets of JIS kids may be the population that has possibilities), but to work it down to the distinguishing factors of what may make your kid a candidiate is too precise a calculation to interest researchers (or their endowers). I guess what I am saying is that they are trying to cut too wide a swath through the jungle. But time and money rule...

Pooka1
05-11-2009, 05:21 PM
I agree with CD and Sharon that the research support for the efficacy of bracing for the general population of kids with scoliosis is dodgy at best. What nags at me is that my gut instinct is that bracing may works for subsets of subsets of kids (and some subsets of JIS kids may be the population that has possibilities), but to work it down to the distinguishing factors of what may make your kid a candidiate is too precise a calculation to interest researchers (or their endowers). I guess what I am saying is that they are trying to cut too wide a swath through the jungle. But time and money rule...

I agree with this. There are hints that it seems to work for some kids despite lack of controls. Maybe someday they will show that and save many kids from having to wear braces either due to it not working or because their curves would not increase no matter what they did or didn't do.

I suspect the fraction of kids who can be helped with bracing is just so small that it might be trapped in the noise of the studies which, for bracing, is considerable. Some studies are exclusively noise in my little opinion.

Pooka1
05-11-2009, 05:22 PM
And at least it is being studied. That's more than can be said of any number of "orphan" diseases.

So that's in the plus column.

Ballet Mom
05-11-2009, 06:04 PM
Concerned Dad,

No, I didn't run from the doctor because of the genetic testing, when he told me that he would be one of the first doctor's to receive the test, I actually was very interested to find out if genetics was involved in my daughter's case and continued to see him for a while after that. I really liked him.

Unfortunately, I was very concerned about that lower curve progressing in the Charleston brace, which, from my internet research, is known to do that in some cases. When I realized that he hadn't given us the lower curve's size at our last appointment with him, I called back to ask...because I was willing to try and get her in a different brace if we could to try to stop that lower curve. (Note that he wasn't the doctor who prescribed the Charleston, I had left the initial doctor because when he started talking about possible surgery, I knew I had to find a doctor who accepted my insurance plan, the first one didn't).

The physician's assistant called me back and told me that the doctor was beginning to believe in the genetic progression of curves and he wouldn't recommend a new brace anyway. So it could have been just that he didn't want to prescribe a brace less than a year after her first brace, or that he felt I was just being a nervous mom and the brace was working, or it could be that he just sees so many of the most difficult cases that most of them don't work with braces. In fact, the surgeon I am going to presently knows the prior surgeon and didn't believe me when I told him that he might not prescribe a new brace for my daughter when she needed it. : ) He told me I was a type A personality...heh...(which actually I'm not, just when my daughter's health is on the line).

I then called the maker of the Providence brace to find a doctor who prescribed it, but there was no one in this area who did. So I called my orthotist and he recommended the doctor we're seeing now. He has a co-worker who hand makes a brace similar to the providence that is apparently doing really well for this doctor. My daughter has actually just received this brace, but not due to her second curve, as that had actually noticeably reduced in size, but because she had outgrown the Charleston.

Ballet Mom
05-11-2009, 06:22 PM
So as not to depress everybody about the bracing situation, I thought I'd share a link from the bio page of a doctor at UC Irvine and what it says (which I found on my massive hunt for scoliosis info):

"His discovery of the mechanical cause of adolescent scoliosis promises to eventually (not for a few years yet) eliminate the need to fuse teenage spines for routine scoliosis. This model suggests that bracing in this type of scoliosis may do more harm than good".

http://www.ucirvineorthopaedicsurgery.com/faculty/kiester.html

So hopefully in some years time, they will have an alternative to bracing for these kids...I certainly hope so. Hopefully discoveries are continuing to march on, and there will be a radical change in the way scoliosis is treated. I'm certainly keeping my fingers crossed. If anyone knows anything about this research, please post, I'd be interested to find out more about it!

Pooka1
05-11-2009, 06:31 PM
This model suggests that bracing in this type of scoliosis may do more harm than good".

I can believe that!

My kid was stable for 6 months prior to getting the Charleston. Her curve increased 8*(!) in the first six months of wearing the brace. :eek::(

Luckily, it was stable during the next 6 month period. But if I wasn't so grounded by the cool, calm, nuanced posts of CD, I might have flown off the handle at the loss of stability after getting the brace. It was an effort not to take the brace out in the back and shoot it. :D

Calmer heads...

concerned dad
05-11-2009, 07:36 PM
On second thought

Ballet Mom
05-11-2009, 07:59 PM
I'm hoping that this very intelligent man has been given a divine purpose to solve some of these spinal problems...he certainly sounds like the guy who could do it. Let's all hope so for our kids sakes. I don't think Christianity rests one way or the other on the Big Bang Theory in my view.

By the way, CD, if you are seeing my daughter's prior surgeon, I think you're in good hands since you're not sure you want to brace or not. I was sure. And anyway, his physician's assistant could have said something that didn't necessarily reflect the surgeon's position.

concerned dad
05-12-2009, 07:22 AM
Of course, you are correct Ballet Mom.

Ballet Mom
05-12-2009, 12:00 PM
CD, here's an interesting article...

http://innovation.freedomblogging.com/2008/05/09/brain-surgeon-teams-with-rocket-scientists-on-high-tech-tools/685/

Hopefully, if these brilliant rocket scientists were able to send us to the moon and back with all those forces, finding out about the forces on a spine might just be a walk in the park comparatively... Here's to hopefully good news in the future, in all sorts of medical fields. :)

Pooka1
05-12-2009, 12:24 PM
But the weight of evidence suggests that braces, although unpleasant will help many kids.

troublingly inconsistent bracing results (http://www.ncbi.nlm.nih.gov/pubmed/17728687?ordinalpos=1&itool=EntrezSystem2.PEntrez. Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.P ubmed_Discovery_RA&linkpos=5&log$=relatedreviews&l ogdbfrom=pubmed)

Surgical rates after observation and bracing for adolescent idiopathic scoliosis: an evidence-based review.

Dolan LA, Weinstein SL.

Department of Orthopaedics and, Rehabilitation, University of Iowa Healthcare, Iowa City, IA, USA. lori-dolan@uiowa.edu

STUDY DESIGN.: Systematic review of clinical studies. OBJECTIVES.: To develop a pooled estimate of the prevalence of surgery after observation and after brace treatment in patients with adolescent idiopathic scoliosis (AIS). SUMMARY OF BACKGROUND DATA.: Critical analysis of the studies evaluating bracing in AIS yields limited evidence concerning the effect of TLSOs on curve progression, rate of surgery, and the burden of suffering associated with AIS. Many patients choose bracing without an evidence-based estimate of their risk of surgery relative to no treatment. Therefore, such an estimate is needed to promote informed decision-making. METHODS.: Multiple electronic databases were searched using the key words "adolescent idiopathic scoliosis," "observation," "orthotics," "surgery," and "bracing." The search was limited to the English language. Studies were included if observation or a TLSO was evaluated and if the sample closely matched the current indications for bracing (skeletal immaturity, age <15 years, Cobb angle between 20 degrees and 45 degrees ). One reviewer (L.A.D) selected the articles and abstracted the data, including research design, type of brace, minimum follow-up, and surgical rate. Additional data concerning inclusion criteria and risk factors for surgery included gender, Risser, age and Cobb angle at brace initiation, curve type, and dose (hours of recommended brace wear). RESULTS.: Eighteen studies were included (observation = 3, bracing = 15). All were Level III or IV clinical series. Despite some uniformity in surgical indications, the surgical rates were extremely variable, ranging from 1 surgery of 72 patients (1%) to 51 of 120 patients (43%) after bracing, and from 2 surgeries of 15 patients (13%) to 18 of 47 patients (28%) after observation. When pooled, the bracing surgical rate was 23% compared with 22% in the observation group. Pooled estimates for surgical rate by type of brace, curve type, Cobb angle, Risser sign, and dose were also calculated. CONCLUSION.: Comparing the pooled rates for these two interventions shows no clear advantage of either approach. Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. This recommendation carries a grade of D, indicating that the use of bracing relative to observation is supported by "troublingly inconsistent or inconclusive studies of any level." The decision to brace for AIS is often difficult for clinicians and families. An evidence-based estimate of the risk of surgery will provide additional information to use as they weigh the costs and benefits of bracing.

(emphasis added)

Dingo
05-12-2009, 12:32 PM
Pooka1


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

I happen to believe that bracing (if it's actually used when prescribed) and even exercise can help AIS. However I wouldn't disagree with that paragraph. It's not a slamdunk.

LindaRacine
05-12-2009, 12:46 PM
So as not to depress everybody about the bracing situation, I thought I'd share a link from the bio page of a doctor at UC Irvine and what it says (which I found on my massive hunt for scoliosis info):

"His discovery of the mechanical cause of adolescent scoliosis promises to eventually (not for a few years yet) eliminate the need to fuse teenage spines for routine scoliosis. This model suggests that bracing in this type of scoliosis may do more harm than good".

http://www.ucirvineorthopaedicsurgery.com/faculty/kiester.html

So hopefully in some years time, they will have an alternative to bracing for these kids...I certainly hope so. Hopefully discoveries are continuing to march on, and there will be a radical change in the way scoliosis is treated. I'm certainly keeping my fingers crossed. If anyone knows anything about this research, please post, I'd be interested to find out more about it!
It would be interesting to know in what percentage of cases, his patients are getting worse with bracing. This could just be an issue of using really bad orthotic techniques.

The guy does seem like a mad scientist, and it should be noted that he is not a member of the Scoliosis Research Society.

Ballet Mom
05-12-2009, 01:18 PM
Hee hee! Yes, I suppose he could be a mad scientist...hadn't thought about that! I was just assuming that UC Irvine wouldn't be announcing his research on their website if he was.

Don't get me wrong, I am VERY pro-bracing...everytime I hear someone saying that bracing doesn't work, it upsets me because my daughter has had wonderful results from the school screening program and her bracing, and I hate to think of anyone being convinced not to try the bracing because it may very well work for their son or daughter. And it has not been a problem for my daughter at all to wear her brace at night. It has really been a small sacrifice.

I hate to think if they don't find a significant result on this Braist study, that funding will be shifted to fight obesity in kids...who should just learn not to eat fries and drink sodas. Then so many kids like my daughter won't have the chance to have successful bracing results and avoid surgery and the possible long-term risks in addition to just the regular risks in major surgery (and no possible professional ballet career due to a fused spine). And the awesome technology of these braces will be lost as the brace manufacturers go out of business and the orthotists no longer study scoliosis bracing.

I was simply more interested in the possible avoidance of fusion surgery in the future for AIS suggested by this doctor, and figured someone would call me out if I didn't quote the rest of the sentence about the possible damage caused by the brace.

I would definitely love to know more about his research.

mamamax
05-12-2009, 06:23 PM
Hi Mamamax
I am able to open the Kyphosis: Physiotherapy & bracing file.
Try this: Click on the link on the SOSORT site. When the pop up asks "Do you want to Open or Save this file?", choose "Save".
Then go to where you saved the download on your computer and double click on the Zip folder - inside that folder will be an excel document. I was able to open the excel document by double clicking from there.
The document seems to have multiple tabs that give the results of how different health care professionals answered a bunch of questions related to physiotherapy & bracing.
If you don't have Microsoft Excel, then I'm not sure how you can open the file but then hopefully someone else will know how. :)
Good luck!


Excellent instructions - got it & thanks much swimmergirlsmom! :D

concerned dad
05-13-2009, 08:42 AM
Well, I think I discovered what it is this fellow discovered.


Fusion Cage (http://www.freepatentsonline.com/6893464.html)

And I recalled reading about them in a paper in SPine earlier this year where the author was calling for changes in the Spine Surgery approach to medical devices. The paper is "Is the Spine Field a Mine Field?".
I mentioned this paper in another post here (http://www.scoliosis.org/forum/showpost.php?p=74865&postcount=31).

Table 1 is attached and the text relative to the fusion cage is below:

Stand-alone interbody fusion cages - Approved based solely on case series. Nonindustry-sponsored studies showed less favorable results than industry-sponsored case series.62 Never proven superior to other treatments in RCTs. Described by president of 1 spine society as prompting a “fusion cage explosion,” but “4 yr later, the efficacy of these stand-alone devices is very questionable.”63

Just because this author criticizes it, doesnt mean it is necessarily bad. I just wanted to find out what this guy was on to. Pretty sure this is what is referred to on the university website.

concerned dad
05-13-2009, 10:20 AM
Don't get me wrong, I am VERY pro-bracing...everytime I hear someone saying that bracing doesn't work, it upsets me because my daughter has had wonderful results from the school screening program and her bracing, and I hate to think of anyone being convinced not to try the bracing because it may very well work for their son or daughter. And it has not been a problem for my daughter at all to wear her brace at night. It has really been a small sacrifice.


Ballet Mom, your post got me thinking. I am glad your daughter has had good results. If we were going to brace our daughter (if she were younger), we would choose a night brace too.
But, I wanted to respond to address something you said.
Nobody has said bracing doesnt work. The only time I've heard a statement close to this is related to Adult Bracing.
I am glad we moved this discussion to the research forum because I would NOT want a kid to have the impression that we are saying bracing doesnt work. We should all be careful and watch our words. I am not sure why Ballet Mom got this impression.
Some of us say "We dont KNOW if bracing works" Big difference, but perhaps subtle.


I hate to think if they don't find a significant result on this Braist study, that funding will be shifted to fight obesity in kids...who should just learn not to eat fries and drink sodas.

If they dont find significance in their results it will be a shame because the question will remain open.

You might be interested to read Lori Dolans comments on the other forum here (http://www.scoliosis-support.org/showpost.php?p=118419&postcount=12)

It is a shame they are not using other braces too. This Braist study will only address the effect of a Boston Brace on Surgical rates. But, they will be lucky if they get enough participants to get significance in their results with even this one brace.


Then so many kids like my daughter won't have the chance to have successful bracing results and avoid surgery and the possible long-term risks in addition to just the regular risks in major surgery (and no possible professional ballet career due to a fused spine). And the awesome technology of these braces will be lost as the brace manufacturers go out of business and the orthotists no longer study scoliosis bracing.

In my opinion, I would guess the results will suggest WHEN bracing would be effective. And for WHAT type and AMPLITUDE of curves perhaps. But, in the unlikely event that the results show it is NEVER effective, well, brace manufacturers shouldnt be selling them.

The whole issue about school screening seems somewhat political. I'm not sure what to think about it. My daughter's 38 degree curve was missed by a school screening completed just 2 months before her diagnosis. As a society we need to determine if school screening is the best approach. Maybe it is, I dunno.


I was simply more interested in the possible avoidance of fusion surgery in the future for AIS suggested by this doctor, and figured someone would call me out if I didn't quote the rest of the sentence about the possible damage caused by the brace.

I would definitely love to know more about his research.

It looks like this doctor wasnt talking about avoiding surgery, just fusion surgery. It would be interesting to know why his research into the 3-d aspect of scoliosis suggests to him bracing can cause harm I didnt see any papers to this effect in his CV. Maybe he was one of the two doctors whose responses were ignored in the Equipoise paper (Two guys predicted worse outcomes after bracing for ALL posited scenarios - their responses were excluded because it was assumed they didnt understand the questions).

Pooka1
05-13-2009, 12:03 PM
CD, excellent analysis, as always.

I associate myself with your remarks. :)

PNUTTRO
05-13-2009, 01:32 PM
The whole issue about school screening seems somewhat political. I'm not sure what to think about it. My daughter's 38 degree curve was missed by a school screening completed just 2 months before her diagnosis. As a society we need to determine if school screening is the best approach. Maybe it is, I dunno.

My 48 degree curve developed over a period of less than 4 months. At the time, I was told that my only option was surgery and my mother agreed. Screening probably catches more cases than it misses.

Ballet Mom
05-13-2009, 01:32 PM
Wow, good research CD! Although I think that the cage sounds like it pertains to fusion surgery, not to non-fusion surgery. I was more interested in the potential fusionless future for AIS treatment. And yes, I know that it sounds like his fusionless remedy probably includes surgery. At least he doesn’t sound like a quack to me.

I have read this scoliosis forum quite closely over the past year plus, and I have to disagree that there is no one saying that bracing doesn’t work. Occasionally, as an afterthought, a comment gets thrown in that no one has “proven” bracing works or not, but surgery as a “cure” is certainly being promoted in quite a flippant manner. And it saddens me to think that people are not using or possibly abandoning their braces due to this cavalier attitude (although if I were using the Spinecor brace, and my child was about to hit their peak growth, I might really consider whether to change braces at that point).

Part of the reason I went to the second surgeon, beyond the insurance issue, was the first surgeon had prescribed the Charleston Bending Brace for my daughter. I did not “choose” it, he said it was what he would use if his daughter had scoliosis. But when I told the school nurse on a follow-up call that my daughter was prescribed a Charleston, she immediately said “Oh, those don’t work!” And, in fact, when he turned down the use of the Spinecor, I had started doing additional research and it apparently looked to me like the braces worn all day had a better success rate than the nighttime bracing.

I immediately called my sister who is a very good doctor at a large medical organization, and asked her what to do. She immediately went to the head of the Orthopaedics group and asked him about the Charleston. He replied that they had a cheerleader with the same Cobb angle and same age as my daughter and they had been able to stop the progression with the Charleston. That was it, no data about studies…etc. Just what had worked for him in a similar situation.

So, I of course, putting on my occasional type A personality, decided to research a good doctor and get a second opinion. This second excellent surgeon at the children’s hospital told me that the first surgeon I had gone to was the chief resident at the same hospital when he was a resident there. He then proceeded to tell me that my daughter should never have been prescribed the Charleston brace because she had two curves and the Cobb angle of the larger curve was too large! So there you go, two outstanding surgeons don’t even agree on a specific brace when they were trained together!

When I talked to the orthotist about what the nurse said, he said, oh no Charlestons do work and she was within the prescribed guidelines. :confused::eek::confused::eek:

(By the way, our first doctor does more than 350 spinal surgeries per year and does research and is not a member of the Scoliosis Research Society, so as far as I’m concerned, the non-membership doesn’t mean his research and expertise isn’t valid).

Ballet Mom
05-13-2009, 01:39 PM
I am of the opinion that just because they won’t get sued out of existence doesn’t mean that surgeons who won’t prescribe bracing are not necessarily negligent. They may just be getting away with it. Scoliosis surgery has many risks associated with it, including an unfortunate result from a surgery being reported right now on that other forum you mentioned CD. I am of the opinion that if the surgery can be avoided at all, within acceptable deformity and pain parameters, it should be. There is some blind faith in science going on here….unfortunately Titanics sometimes sink, and Challengers occasionally explode, not because the designers didn’t have the best of intentions.

Obviously a parent has the right to not brace their child if they don’t want to, which is great, but it should be offered to those who it has a reasonable chance of success with. I think those surgeons who haven’t been successful might want to look harder for the good orthotists. Or perhaps, they’re limited because they see mostly severe cases that won’t respond to bracing in any case.

My sister was quite concerned about my daughter having spinal fusion surgery, she didn’t say not to do it, but she was concerned enough that she wanted to fly in for the surgery and recovery. And just because someone on the forum had a great success with their one child (which I am very happy for her), it doesn’t mean anyone else is going to, including her other daughter. Although I certainly hope she would and the odds have certainly improved in her favor over time.

But to announce many times that surgery is a cure is nonsense…I think I just read in one of the Sosort papers in the link you gave us that surgeons are now becoming concerned with a junctional kyphosis that is now showing up in patients with the firmer spine systems they’re using nowadays. Until they have thirty or forty years of history, they’re not going to know that these systems are any better than the old ones. As ChrisWBS said, it is premature.

So to think that this study is going to solve anything seems somewhat farfetched to me, seeing as everyone involved in this field has a different opinion based on what they’ve seen. It seems it will only prove what has happened with the bracing on that one group of kids in that one study. It won’t even necessarily apply to anyone else. And I would really hate to have one of my grandkids deforming in front of my eyes, if this does turn out to be genetic, and having to fly to Germany in order to get a brace for them. That would be really sad. And I can guarantee you I would do it.

Anyhow, just my amateur viewpoint if anyone has read this far. I’ll get off my soapbox now. Sorry for the very long posts.

Dingo
05-13-2009, 02:01 PM
Ballet Mom

I wrote you a private message, did you get it?

Thanks!

concerned dad
05-13-2009, 02:09 PM
No, dont get off your soapbox. You offer an interesting viewpoint. I may mull it over and offer some comments but I wanted to correct an earlier post.

It looks like the UC Irvine Doctor also invented:
Expandable rod system to treat scoliosis and method of using the same (http://www.freepatentsonline.com/y2006/0009767.html)

I didnt read the other Patent enough to understand it but when Ballet Mom said it was still fusion I knew I had to look deeper.

I know I poked fun at this "mad scientist" but I am happy there are people thinking about this stuff.

It is sort of an implantable brace. And it reminds me of a critique I read somewhere about traditional braces. It was something along the lines of comparing:

a boston brace to treat a curved spine to
an attempt to straighten teeth by wearing a helmut around your head.
(obviously, you would be better able to control the positions of the teeth by putting the oral braces right on the tooth).

LindaRacine
05-13-2009, 02:25 PM
(By the way, our first doctor does more than 350 spinal surgeries per year and does research and is not a member of the Scoliosis Research Society, so as far as I’m concerned, the non-membership doesn’t mean his research and expertise isn’t valid).

Hi Ballet Mom...

While I'm sure there are great doctors who are not members of the SRS, and that there are bad doctors who are, the reason I would choose an SRS professional is that they generally have far more experience with scoliosis issues than non-members. Using anecdotal evidence to make treatment decisions is going to result in bad outcomes more than using the advice of a professional who treats hundreds/thousands, and who keeps up on the research.

Regards,
Linda

LindaRacine
05-13-2009, 02:31 PM
But to announce many times that surgery is a cure is nonsense…I think I just read in one of the Sosort papers in the link you gave us that surgeons are now becoming concerned with a junctional kyphosis that is now showing up in patients with the firmer spine systems they’re using nowadays. Until they have thirty or forty years of history, they’re not going to know that these systems are any better than the old ones.

Hi Ballet Mom....

Actually, junctional kyphosis is nothing new. It is often referred to as disc degeneration above a prior fusion.

I totally agree that we're often too cavalier about surgery. It's a big step, and I would want my child to avoid it if at all possible.

Regards,
Linda

LindaRacine
05-13-2009, 02:34 PM
It is sort of an implantable brace. And it reminds me of a critique I read somewhere about traditional braces. It was something along the lines of comparing:

a boston brace to treat a curved spine to
an attempt to straighten teeth by wearing a helmut around your head.
(obviously, you would be better able to control the positions of the teeth by putting the oral braces right on the tooth).
There's a pretty big difference between bracing teeth (where correction is the goal), and bracing a spine, where halting progression is the goal. With that said, there is plenty of research on stapling, which is being used by some specialists.

--Linda

Ballet Mom
05-13-2009, 04:24 PM
Hi Dingo,

I sent you a response in two parts (the file size was too large to send in just one). I don't see how I know whether I sent the messages to you successfully or not, so hopefully you get the two messages.

Ballet Mom
05-13-2009, 04:38 PM
Hey CD, thanks for doing a little more research. That internal brace sounds very interesting. I hope it works! Or some variant of it. Time will tell....I'm glad progress is marching on.

aterry
05-16-2009, 10:48 AM
I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda. I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work". But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new. The approach that gets the most positive attention is surgery and I don't understand that. The message seems to be: 'surgery is inevitable so don't even consider anything else.' I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I :)) and go back in time so we could do bracing. I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

Pooka1
05-16-2009, 11:46 AM
I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda. I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work". But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new. The approach that gets the most positive attention is surgery and I don't understand that. The message seems to be: 'surgery is inevitable so don't even consider anything else.' I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I :)) and go back in time so we could do bracing. I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

Wow. It's like we are reading entirely different sites.

I would never describe this forum in anything close to the way you did nor would I characterize either bracing or surgery in anything close to the terms you used.

Remarkable.

Pooka1
05-16-2009, 11:53 AM
I can give a few examples...


I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda.

I would characterize it as pro-evidence which equates to the same thing in this case.


I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work".

We don't know that. Bracing might work. There is simply no good evidence it does.


But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new.

Again, I would hope this site is pro-evidence. There is nobody criticizes alternative treatments that have evidence of efficacy (if they even exist).


The approach that gets the most positive attention is surgery and I don't understand that.

Because it is the only treatment to date that has been shown to be definitive.


The message seems to be: 'surgery is inevitable so don't even consider anything else.'

Surgery is not inevitable though it is likely in some cases and unlikely on other cases.


I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I :)) and go back in time so we could do bracing.

I'm sorry about this.


I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

Surgery, far from being the most primitive and barbaric, is the most technically accomplished treatment. There is a reason orthopedic surgeons are the highest paid specialty.

LindaRacine
05-16-2009, 05:33 PM
I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda.
There are some "anti-bracing" activists who post a lot, but I'm fairly certain that I would describe the National Scoliosis Foundation as pro-bracing.

--Linda

Pooka1
05-16-2009, 06:29 PM
"'Anti-bracing' activists"!

"I wouldn't want to belong to any club that would have me as a member." - Groucho Marx

concerned dad
05-16-2009, 08:07 PM
There are some "anti-bracing" activists who post a lot, but I'm fairly certain that I would describe the National Scoliosis Foundation as pro-bracing.

--Linda

If you recognize and discuss the limits of the bracing studies, does that make you an anti-bracing activist? I hope not.

Now if you replace "anti-bracing" with "anti-alternative treatments" then I would say there does seem to be some activism here that could be mellowed. But relax that too much and someone will be placing advertisements.

Pooka1
05-16-2009, 08:13 PM
If you recognize and discuss the limits of the bracing studies, does that make you an anti-bracing activist? I hope not.

Now if you replace "anti-bracing" with "anti-alternative treatments" then I would say there does seem to be some activism here that could be mellowed. But relax that too much and someone will be placing advertisements.

I would say the people labeled "anti-alternative treatments" are more accurately labeled, "pro-evidence" folks though "anti-woo-woo" is more euphonious. :cool: