New and confused

[bbrian35]

I am new to this forum but somewhat disenchanted by the resistance to and contradicting nature of responses by some members to the wonderful, personal success stories of some patients to therapies they chose that seem to have worked for them. They just don't seem to want to believe or acknowledge anything else as being successful. It's disheartening to newbies. It seems any time I read a post about this brace or that, Schroth method, or any number of methods where someone has reduction in Cobb angles, you can bet that certain posters will eventually post their disagreement to or dispute the success of that approach and suggest that any change is most likely not actual or lasting. I appreciate hard data, but like I said, you can almost predict who is going to reply with a not-so-positive post. What's up with that?? Like I said, I'm new with a daughter who has just been diagnosed. This forum is great and very informative. I will be posting my daughter's specifics soon with degrees and chosen method of treatment. I have read almost everything on this forum. I just don't understand the motive of these few individuals. There is some data to support non-surgical treatment and I am hoping to find success in this manner. We are leaning toward Schroth and Cheneau(sp?), but I read a post somewhere that someone wouldn't believe in this unless there was at least 90 years of supportive data. Just when you've read some success stories and start to feel the decisions you've made with the data you've been able to find are a good choice, a follow-post seems to tear it apart. Kind of a bummer!

[hdugger]

I think the motivation of those posts/posters is good. Because there is no effective cure for scoliosis, there are lots and lots of unscrupulous practioners out there promising everything and delivering very little. It's enough to make anyone suspicious.

I think that exercise/bracing can be effective in slowing progression (although I can't prove it :)), but I do understand the caveat that they are not "permanent" treatments. Everything I've read about exercise suggests that you must continue to exercise for the rest of your life in order to maintain whatever benefit you gain.

Because of the sorry state of the research, though, there simply is not hard evidence that any of these things work. (Likewise, there's no evidence that they *don't* work.) What I've been doing to try to sort through the data is to identify those methods where a few cases of documented *reduction* in curves is seen (the curve has to be 35 degrees or more, and the reduction has to be at least 10 degrees and last for as long at the treatment is applied).

That's not to say that one should expect a reduction in a curve - I think that's a pretty rare occurrence. But my thinking is that, if a treatment can reduce a few curves, it probably can keep many more from progressing.

Because my son is over the age for bracing (he's 21 with a curve somewhere in the mid 50s), I'm only looking at exercise treatments, but I suspect you can find similar cases in bracing.

Good luck with your search!

[Pooka1]

hdugger makes some very salient points.

I hope you daughter's curve stops or regresses, whether or not you are doing an alternative treatment. Watching and waiting is extremely effective for the vast majority of cases... only ~10% reach surgical territory. This is why the statements we hear from time to time about "all big curves start out as small curves" is completely inane.

Good luck.

[hdugger]

In case you don't make it to the article, it's important to know that there has not been any long term follow up on the effectiveness or long term risks of this surgery. Here's the relevant information from the article:

"Dr. David Polly, chief of the spine service in the Department of Orthopaedic Surgery at the University of Minnesota, acknowledges the excitement surrounding minimally invasive surgery, but points out that so far, doctors have demonstrated only short-term results, such as shorter hospital stays, less pain, decreased blood loss and quicker recoveries.

Polly, who also serves on the board of the Scoliosis Research Society, wonders whether there will be any long-term benefit to sparing muscle tissue. Once the spine is fixed straight, it won't bend where the metal rods are in place, he points out, "so we don't know if it's important or not" to preserve muscle.

The data are just arriving on longer-term, post-operative effects of minimally invasive scoliosis surgery. Dr. Neel Anand, director of orthopedic spine surgery at Cedars-Sinai Spine Center in L.A., provided The Times with data last week that he will present at the SRS' international meeting next month showing that a study group of 24 patients who had curves averaging more than 42 degrees maintained deformity correction one year after surgery to an average of 6.5 degrees. Anand says these findings show "we absolutely can maintain good correction and get good correction." (Anand is a paid consultant for Medtronic and receives royalties for his contributions to the design of the screws used in the minimally invasive surgeries.)"

[mamamax]

bbrian35 -

None of us have any definitive answers about what treatment will work best for whom - nor do we have any long term studies to support our opinions (but we all have some on the way). We all make our individual decisions, and go from there.

If you've done a lot of forum reading before joining, you can see we're a big family - and a colorful one too! Whatever treatment you decide on, there will be people here to support you and your daughter. Like most big families, not everyone agrees with each other all the time - but it's a hard place to walk away from ;-) We're a work in progress and learning new things everyday.

I wish you and your daughter all the best.

Sincerely - the controversial adult bracer (Spinecor).

[mamamax]

Hello bbrian35,
I can understand your confusion and frustration. I have had a great deal of success with a new minimally invasive procedure that straightens out even the most severe curvatures.
Here is an article in the Los Angeles Times that you might find helpful.
http://www.latimes.com/features/health/la-he-scoliosis1-2009jun01,0,6082394.story
Just to give you a bit of information about MISS - minimally invasive spine surgery:
90% + of all spine surgeries are STILL open spine!
MISS are less risky because there are small incisions, less blood loss, no ICU post surgery, quick recoveries- patients are standing up straight, walking around pain free on Tylenol shortly afterwards.

Hi Doc - did you answer our questions in the other thread yet? This is starting to look like fly-by advertising.

[MitoMom]

I agree with BBrian35. I am new here too (2 weeks).

Many of the posts here are helpful.

But there are some threads where the arguments go on and on without end. Yes, we all want proof and testing and controls to make a valid experiment. But that's not going to happen any place on this earth because no two kids or adults are exactly alike, with exactly the same problem and the same support at home, etc. And yes, debate and questioning is healthy if it helps others understand.

For a new person to read these arguments is a huge turn off and not a good representation of what this forum is for. I even went so far as to ask a moderator how to turn off those threads where there are arguments. Yes, I know I can turn off people but I didn't want to because there maybe something good in other threads that will help my situation.

So for now, I'll keep reading the "new posts" only and when I see it's a post on a thread that contains arguments that go on and on, I'll add to my list of threads to avoid.

[mamamax]

I've been here since April of last year. The postings over the last two weeks are milk toast in comparison. We have come a LONG way in polishing our discussion skills.

I like to think we are getting better at being sensitive to each other needs every day.

When the going really gets tough - we have a resident research scientist who helps us with some much needed stress relief.

Yes, I'm talking about the legendary ..... Hamster Dance: http://www.webhamster.com/

[Pooka1]

I've been here since April of last year. The postings over the last two weeks are milk toast in comparison. We have come a LONG way in polishing our discussion skills.

I like to think we are getting better at being sensitive to each other needs every day.

When the going really gets tough - we have a resident research scientist who helps us with some much needed stress relief.

Yes, I'm talking about the legendary ..... Hamster Dance: http://www.webhamster.com/

Nominated


....

[mamamax]

:D

I love being nominated

[bbrian35]

hdugger makes some very salient points.

I hope you daughter's curve stops or regresses, whether or not you are doing an alternative treatment. Watching and waiting is extremely effective for the vast majority of cases... only ~10% reach surgical territory. This is why the statements we hear from time to time about "all big curves start out as small curves" is completely inane.

Good luck.

Yea, so I'll just sit here and watch and wait....yea.....hmmm.....and what about the 88-100% chance of progression I read on Risser 0? Or is that some data someone who doesn't know what they are talking about at Children's Hospital in Milwaukee (No. 5 in the nation for children overall) decided to throw at me?? I have seen typical chance of progression figures elsewhere, but I'll just watch and wait........yea........right!

[Pooka1]

Yea, so I'll just sit here and watch and wait....yea.....hmmm.....and what about the 88-100% chance of progression I read on Risser 0? Or is that some data someone who doesn't know what they are talking about at Children's Hospital in Milwaukee (No. 5 in the nation for children overall) decided to throw at me?? I have seen typical chance of progression figures elsewhere, but I'll just watch and wait........yea........right!

You're frothing.

Overall, most curves by far do NOT reach surgical territory.

Curves that are large at a low Risser usually progress. Some large curves at low Risser hit surgery territory and stay there for decades. Though that isn't usual, there are at least two players in this microcosm here whose curves did just that.

But the most important point to make is that criticizing waiting and waiting is not rational unless there is some conservative approach that has a better track record. I'm unaware of what that might be.

[Pooka1]

But there are some threads where the arguments go on and on without end.

I suggest you might like this scoliosis group much better than NSF...

http://www.scoliosis-support.org/index.php

It's really quite excellent for support purposes.

[Pooka1]

I am new to this forum but somewhat disenchanted by the resistance to and contradicting nature of responses by some members to the wonderful, personal success stories of some patients to therapies they chose that seem to have worked for them.

I suggest you might like this scoliosis group much better than NSF...

http://www.scoliosis-support.org/index.php

It's really quite excellent for support purposes.

[MitoMom]

Thanks for the stress buster of the evening. John, the kyphoscoliosis resident is going to take the web site into his special ed vocational classroom tomorrow to entertain his friends. As for me, I'll probably share it with friends and family.

As for the older posts, I read those so I could understand what the current post was about. Some were way out there.

And blast you, now I've got that dumb hamster dance song in my head:D My husband is singing it too. Help!

[mamamax]

Overall, most curves by far do NOT reach surgical territory.

Curves that are large at a low Risser usually progress. Some large curves at low Risser hit surgery territory and stay there for decades. Though that isn't usual, there are at least two players in this microcosm here whose curves did just that.

But the most important point to make is that criticizing waiting and waiting is not rational unless there is some conservative approach that has a better track record. I'm unaware of what that might be.



You know maybe the literature suggests that most curves do not reach surgical territory - I don't know, haven't read it all. Let's presume this is true - even if curves do not reach surgical territory, that does not mean that they do not adversely effect quality of life (pain and such).

And I'm not sure we can trust the literature either. Is there some life-long tracking thing for everyone diagnosed that I'm not aware of?

I wasn't supposed to progress, but I did. And I seem to see that all the time right here in forum with others echoing the same sentiment.

So why would anyone want to watch and wait when we find so many reports of things that can help? Granted, we also have no life long studies of things like Schroth and bracing - but we have plenty of anecdotal reports from parents (real people) right here in forum. I don't think we should ignore or dismiss these things just because the literature may not have caught up to the reality.

[bbrian35]

Wait a minute ...


So why would anyone want to watch and wait when we find so many reports of things that can help? Granted, we also have no life long studies of things like Schroth and bracing - but we have plenty of anecdotal reports from parents (real people) right here in forum. I don't think we should ignore or dismiss these things just because the literature may not have caught up to the reality.

THANK YOU!!! So often it seems some are more interested is arguing their point than in offering supportive info for those looking for some help. I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.

[mamamax]

I suggest you might like this scoliosis group much better than NSF...

http://www.scoliosis-support.org/index.php

It's really quite excellent for support purposes.

That was a little .... harsh? I think our new member is where she wants to be - though she may want to join the other one also .. some of us do.

[bbrian35]

I suggest you might like this scoliosis group much better than NSF...

http://www.scoliosis-support.org/index.php

It's really quite excellent for support purposes.

Do you argue your points of view as critically and relentlessly there also????

[mamamax]

THANK YOU!!! So often it seems some are more interested is arguing their point than in offering supportive info for those looking for some help. I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.

You are NOT a bad parent! I understand the feeling though - but remember, none of this is your fault. Other parents here have also chosen Schroth - I haven't seen any bad reports. If you search the forum you should be able to find other parents here to network with. I hope you will keep us posted on your journey and I wish you and your beautiful daughter all the very best of success. Don't worry about loosing it once in awhile in forum - I think we all do that occasionally.

[mamamax]

Thanks for the stress buster of the evening. John, the kyphoscoliosis resident is going to take the web site into his special ed vocational classroom tomorrow to entertain his friends. As for me, I'll probably share it with friends and family.

As for the older posts, I read those so I could understand what the current post was about. Some were way out there.

And blast you, now I've got that dumb hamster dance song in my head:D My husband is singing it too. Help!

That hamster dance is legendary :D

[hdugger]

I don't know if you've stumbled across the SEAS group, over in Italy. Their general protocol, if I remember correctly, is exercise for smaller curves, braces for moderate curves, and surgery for large curves. That makes sense to me.

We effectively "waited and watched" with my son because we foolishly believed our doctor when he said that he had finished his growth spurt and had managed to avoid surgical territory. 1 year and 24 degrees of progression later (oops!) he was well into surgical territory with a 50+ degree curve.

Realistically, there probably was nothing we could have done that would have changed that year for us. His curve is so high that bracing is likely ineffective, and exercise just does not seem to hold a rapidly progressing curve. But I would be kicking myself less if I'd at least tried something.

For a small curve, with a minimal investment (I think Dingo described the exercise using a simple stretch band) you could try the torso rotation. There's something called side-shifting which is free. I described it somewhere in the last few days, if you want to look at my posts. Neither of these is likely to hurt and it's probably worth it on the chance that they help.

[Pooka1]

You know maybe the literature suggests that most curves do not reach surgical territory - I don't know, haven't read it all. Let's presume this is true - even if curves do not reach surgical territory, that does not mean that they do not adversely effect quality of life (pain and such).

That's a good point. I would like to know how many people get surgery for pain only, progression only, and for progression plus pain. Reading testimonials, I think progression seems to be involved in most surgeries but I don't know that.


And I'm not sure we can trust the literature either. Is there some life-long tracking thing for everyone diagnosed that I'm not aware of?


An excellent point that is routinely ignored. There are some players here who think the literature is far better than it actually is. There is a range... something like reporting on whether a patient did or didn't have a revision is one thing and can be known with certainty; Reporting on surgical rates in an uncontrolled bracing study is just not publishable in my little opinion. I also think it is unethical to do bracing studies when you can't in principle find an answer one way or the other. Braist is the only ethical bracing study that I am aware of.


I wasn't supposed to progress, but I did. And I seem to see that all the time right here in forum with others echoing the same sentiment.

Maybe Linda knows but I think the claim is that including those patents it's still up around 90% who never progress to surgery territory in their lifetime. It seems fair to suggest that besides viral infections treated with antibiotics, scoliosis is the most uselessly overtreated condition out there given the prevalence of conservative approaches from both surgeons and others. It's an uncanny situation where there is no real evidence for a standard of care as Lori Dolan points out.


So why would anyone want to watch and wait when we find so many reports of things that can help?

As far as we know, most kids who are treated with braces either were not going to progress or will progress anyway. If some kids are helped by bracing, and that is certainly possible even with the data in hand, it is not a large group and has eluded detection. I think a surgeon on that POSNA lectures series mentioned ~10% who might avoid surgery due to bracing. That means ~90% will have suffered with a brace, sometimes for years, for no good reason. This is no benign treatment.

And I think a case can be made with the present data set that some of those 10% brace "successes" only had surgery delayed, not avoided. When we look at the recovery trajectories of kids versus adults, in the age of pedicle screws, that is not a good thing in my opinion. Recall those two low term studies about revision rates... it was about three fold higher in the adult patients, compared to the kids but still relatively low (~25%) and with the same/similar instrumentation.

And while you will see surgeons prescribing braces still despite no good evidence, I don't think you will find any surgeon who thinks PT is effective at all for halting progression. Look at Dr. Samdani on the torso rotation video in the face of a 6* reduction in that little girl. And he STILL said that. This is his game.

If I'm missing something or am misunderstanding something please edify me.

[Snoopy]

I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.

Welcome!

Please don't beat yourself up over not noticing your daughter's Scoli sooner. It is hard not to beat yourself up. We've all done it. Try to focus on the present and not the past. Focusing on the past won't change anything. Trust me, I know, I've been there, done that. My daughter's Scoli wasn't diagnosed until it was already 36* and she had a Scoli check yearly!

I would suggest that you get at least a second opinion. It never hurts. Trust your instincts. Keep your daughter involved with what's going on--it is her body and she deserves to know (on an age appropriate level, of course) what's going on.

Hang in there. You are not alone.

Mary Lou

[bbrian35]

Pooka, Please, please, please find a different thread for your argument. And to all those others sharing their stories, info, and supportive comments, thank you so very much.

[mamandcrm]

bbrian35,

If you have any particular questions regarding the Rigo-Cheneau brace which you do not find answered on the forum already, please feel free to PM me. My daughter has been wearing the brace for one year, full-time, with great success. She does not do Schroth therapy so I cannot help you there.

[bbrian35]

To all of the kind offers to PM those who have responded or PM'd me, I will get back to each of you when I have a bit of time. Thank you to all. Today I am building a set of stall bars for the exercise room. Initial brace fitting is next week. Here we go!! My daughter has such a great attitude so far and I am finding her to be quite strong, resilient and amazing!

[LindaRacine]

Pooka, Please, please, please find a different thread for your argument. And to all those others sharing their stories, info, and supportive comments, thank you so very much.

Hi Brian...

Welcome. I hope you find help here.

I have to say that, when the first time someone posts to a forum, it's got nothing to do with scoliosis, but is sort of a rehash of all the battles that have gone before, one has to wonder what your true motivation is. If you really want to connect to only those who agree with you, Pooka's advice above is probably appropriate.

Regards,
Linda

[hdugger]

Or, you could stay here and use the ignore feature to filter out posters you'd rather not read. IMO, you'd be missing something by filter out Pooka's posts, but you are free to do so.

[skevimc]

I'm new to the forum but have been in the scoliosis world for a while. There was a very interesting study/commentary published by Stephano Negrini in 2006 in the online journal Scoliosis. He describes the social acceptability of scoliosis and various treatment options. One of the most interesting findings was that with only a 25% risk of progression, 87% of patients/families would want to do some kind of exercise for treatment. The main idea, I think, is that families and patients feel better about their condition if they feel like they have some kind of control.

So, BBrian35, welcome to the forum. I can tell you that you are not alone in your feelings as a parent. You will be your daughters best advocate. Approach any forums with some caution. Educate yourself and your daughter on what's happening. Ask questions. Work to accept that your daughter has scoliosis. That doesn't mean you surrender to it. It just means that looking for a treatment that will 'cure' or erase it will drive you crazy.

[Pooka1]

I'm new to the forum but have been in the scoliosis world for a while. There was a very interesting study/commentary published by Stephano Negrini in 2006 in the online journal Scoliosis. He describes the social acceptability of scoliosis and various treatment options. One of the most interesting findings was that with only a 25% risk of progression, 87% of patients/families would want to do some kind of exercise for treatment. The main idea, I think, is that families and patients feel better about their condition if they feel like they have some kind of control.

I have heard it said more than once that braces are for parents, not for patients. Though there is no evidence showing braces can't work in principle or practice, I can understand why some think braces are only for parents.

[bbrian35]

And again, so I can't help but to believe your inference is to not brace. Now the question is which studies merits consideration in treatment options. Is it the ones that say bracing is ineffective or those that say it is effective? Is there a study on the beliefs and opinions of those who braced with progression and no longer believe it a viable and valid treatment option? Anyway, stall bars are built, glued, and clamped. The kiddo, even though quite young, was to her third Schroth treatment today. I find the studies done on Schroth in Europe to be worthy of consideration as a determining factor in treatment options for us. Here we go!!! 11 years old with the will and determination of someone will beyond her years. She's amazing!!!

[bbrian35]

Hi Brian...

Welcome. I hope you find help here.

I have to say that, when the first time someone posts to a forum, it's got nothing to do with scoliosis, but is sort of a rehash of all the battles that have gone before, one has to wonder what your true motivation is. If you really want to connect to only those who agree with you, Pooka's advice above is probably appropriate.

Regards,
Linda
Quite the opposite really. This has everything to do with scoliosis. I don't care to find only those who agree, I want as many different opinions as possible. I would add Pooka to the ignore list, but feel that would not give me the scope of insight I want. Pooka is obviously strong in her convictions as others are in theirs. I respect everyone of them and their opinions. Pooka just has her way of doing things from what I've read, and though posts are traded in disagreement, I respect her opinion. My true motivation that you question is to find out as much as possible and find support that I may be able to also offer others as I live and learn this new way of life!

[Pooka1]

And again, so I can't help but to believe your inference is to not brace. Now the question is which studies merits consideration in treatment options. Is it the ones that say bracing is ineffective or those that say it is effective?

It's the ones that are well designed. I suggest it is no accident that you triage papers based on results. You will never get anywhere doing that.


Is there a study on the beliefs and opinions of those who braced with progression and no longer believe it a viable and valid treatment option?

I don't think you understand that beliefs are entirely irrelevant in science/medicine. Rational people accept facts based on evidence. Belief doesn't enter into it.


Anyway, stall bars are built, glued, and clamped. The kiddo, even though quite young, was to her third Schroth treatment today. I find the studies done on Schroth in Europe to be worthy of consideration as a determining factor in treatment options for us. Here we go!!! 11 years old with the will and determination of someone will beyond her years. She's amazing!!!

I'm sure she is. I hope it works for her.

[hdugger]

This is an area where Pooka and I disagree. My sense is that science has utterly failed in sorting out the usefulness of bracing. Given this, I'd be inclined to find a good orthopedic surgeon who you trust and get their guidance.

Although doctors don't have good studies to rely on, they're in the trenches day in and out and are far more likely than any of us here to have a sense of how bracing might affect the progression of your daughter's curve.

Pooka, if you want to take this discussion down to the research area, we can parce through all of the studies, but I don't feel it's appropriate for us to do that here, given the collective state of our knowledge :)

[Pooka1]

This is an area where Pooka and I disagree. My sense is that science has utterly failed in sorting out the usefulness of bracing. Given this, I'd be inclined to find a good orthopedic surgeon who you trust and get their guidance.

Well yes but I suggest it is not through any fault of the researchers. Some things are inherently hard to study including highly variable things like scoliosis.


Although doctors don't have good studies to rely on, they're in the trenches day in and out and are far more likely than any of us here to have a sense of how bracing might affect the progression of your daughter's curve.

One of the results of the equipoise paper was the sheer magnitude of the spread of opinion on certain categories of brace efficacy. The question is what is driving this large range of opinion? Maybe expertise of the orthotists they work with. Maybe something else.


Pooka, if you want to take this discussion down to the research area, we can parse through all of the studies, but I don't feel it's appropriate for us to do that here, given the collective state of our knowledge :)

I take your point.

[bbrian35]

I'm fairly certain the physical therapy and exercise can't hurt. I agree that reputable clinicians who have experience in treating scoliosis is where I have to place my trust. They have treated the patients and have documented the results of their treatment. Unlike Pooka, I don't perform valid studies with control groups based on scientific method. I am simply hoping to meet people who have or are going through life affected by scoliosis, and that they might be so kind as to share their experiences and what has helped them get from diagnosis to where they are now, what they've done for treatment, what they find works for them, and let them know I greatly appreciate anything they share. The PM's are heart-warming and sincere! I can't get that from a published study. I can always post in the research area if I want the data and the links to all of these studies.

[Pooka1]

I wasn't supposed to progress, but I did.

Do you mind expanding on this comment? Specifically what was your curve angle at maturity?

Thanks.

[hdugger]

Well yes but I suggest it is not through any fault of the researchers. Some things are inherently hard to study including highly variable things like scoliosis.

Given my background, I'm unlikely to blame the researchers :)

Ethically, it's just very, very hard to get between a doctor and their patients in order to run a randomized study. If bracing works, you don't want to deny patients the opportunity. And, if it doesn't work, you don't want to assign them to years of discomfort. So, I don't blame anyone for the state of research. It just is what it is.



One of the results of the equipoise paper was the sheer magnitude of the spread of opinion on certain categories of brace efficacy. The question is what is driving this large range of opinion? Maybe expertise of the orthotists they work with. Maybe something else.


I'm still reeling from that one proceeding where the doctors present: 1) Couldn't agree on where to fuse the patient, 2) Couldn't agree on *whether* to fuse the patient, and 3) Couldn't agree if the main problem they faced was stopping the clock on a progressing curve or to starting the clock on revision surgery.

Given that they can't agree on surgery, which is, presumably, the thing they know the most about, it doesn't surprise me that they can't agree on bracing.

[Pooka1]

I'm still reeling from that one proceeding where the doctors present: 1) Couldn't agree on where to fuse the patient, 2) Couldn't agree on *whether* to fuse the patient, and 3) Couldn't agree if the main problem they faced was stopping the clock on a progressing curve or to starting the clock on revision surgery.

Given that they can't agree on surgery, which is, presumably, the thing they know the most about, it doesn't surprise me that they can't agree on bracing.

I know! I was floored by that. I think the range of opinion on those cases was as large or larger than that for bracing efficacy which, given the stakes, could be very concerning. That said, it could be the case that there is more than one right answer although there are certainly wrong answers in surgery.

[skevimc]

I don't think you understand that beliefs are entirely irrelevant in science/medicine. Rational people accept facts based on evidence. Belief doesn't enter into it.




I would disagree with this comment. The placebo effect is very well documented. As well, when considering acceptance of outcome, I would suggest that the beliefs of the family about how adequate their treatment was can have a big impact on quality of life, which is commonly overlooked in favor of quantifiable outcomes. I know the SRS-22 questionnaire tries to address some of these issues. As well, this was one of the main ideas behind the Negrini paper I mentioned.

That being said... I think I understand the point you are trying to make. Certainly from a "what treatment should I pick for my daughter" point of view. Whether a patient 'believes' the treatment worked or not is irrelevant. Overall outcome is the primary issue.

[Pooka1]

I would disagree with this comment. The placebo effect is very well documented. As well, when considering acceptance of outcome, I would suggest that the beliefs of the family about how adequate their treatment was can have a big impact on quality of life, which is commonly overlooked in favor of quantifiable outcomes. I know the SRS-22 questionnaire tries to address some of these issues. As well, this was one of the main ideas behind the Negrini paper I mentioned.

That being said... I think I understand the point you are trying to make. Certainly from a "what treatment should I pick for my daughter" point of view. Whether a patient 'believes' the treatment worked or not is irrelevant. Overall outcome is the primary issue.

Yes but the placebo effect is real and therefore part of science. Just as researchers can't explain exactly how Li works to ameliorate manic depression doesn't negate the fact that it can be demonstrated to be effective.

In this and everything, I try to draws a line between on the one hand scientific facts that are accepted based on evidence and on the other hand hopes, wishes and dreams that are believed on faith.

This doesn't mean researchers can't hope a study turns out a particular way or that having a faith can't really help people... the latter has been shown... religious people tend to live a somewhat longer and happier life on average than heathens like myself. That doesn't prove the truth of the underlying claim though; It is the placebo effect which is real. Wishful thinking really does have a slight benefit in this regard. That is science because there is evidence.