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Thread: Very Interesting Scoliosis Blog

  1. #46
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    Quote Originally Posted by concerned dad View Post
    2. I think I am the only one here actively not bracing a child with a curve within bracing range. Could be wrong on that but feeling kind of lonely since I just came to that realization. But it doesnt have anything to do with money or insurance. (And participants in the Braist study must provide both - there is no free bracing or surgery for participants).
    Hey CD! I'd be right there with you if my daughter didn't want to try it. I told her she can stop wearing it any time she likes. For example, she has stopped bringing it on trips. She stopped bringing it on trips AFTER her curve went from being stable before the brace to increasing 8* in six months IN the brace. I think she realized the brace wasn't holding the curve. But she still wears it most nights as far as I know. At this point, she might be doing it because she has a hard time sleeping without it which concerns me slightly muscle atrophy wise.

    I'm always with you, CD. You have my undying respect and appreciation for your significant contributions to this forum and for being an example to me of true open-mindedness. That is not so common and is to your great credit.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #47
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    Quote Originally Posted by Pooka1 View Post
    I hope people realize we are ALL amateurs on this site. A researcher posted a few times on the UK forum. But that's it as far as I can tell for both fora.
    Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

    (OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)

  3. #48
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    Quote Originally Posted by concerned dad View Post
    Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

    (OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)
    Wow!

    I don't care what opinion they have. It would be beyond fantastic to read posts from an orthopedic surgeon.

    ETA: I suspect there will be some "edifications" on what surgeons likely have told patients versus what people report they were told. It's hard to get what they mean sometimes. The recent example I had was my misunderstanding about progression potential if at a sub-surgical angle at maturity.
    Last edited by Pooka1; 05-15-2009 at 04:43 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #49
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    Yes CD, losing that post was extremely painful!

    An orthopedic surgeon visiting the site? This forum just gets more and more interesting! I can hardly wait. Getting out the popcorn maker...hee hee!

  5. #50
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    Well, I didnt predict one would be posting. I just predicted that sooner or later we would "hear" from one. You cant keep discussions like we're having under wraps.

    But, if one should post, we all have to be extra careful and treat him/her with the same respect Lori Dolan was treated with on the other forum. (And her views were/are in stark contrast to the predominant views there - boy, they keep things civil in Europe).

  6. #51
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    Respectful,of course!

  7. #52
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    Below I am talking about my views on AIS, not juvenile or infantile scoliosis.

    Darn it all. Let me see if I can resurrect my thoughts.
    Been there, done that. Very frustrating, especially on long posts where you’ve given a lot of thought to what you want to say.

    I think when I read the Braist study, they were quite clear that they would only use those families who had no preference one way or the other in bracing. I personally am not a candidate for this study because I would no way risk that for my daughter. Personally, I don't consider this study ethical, and it's probably why they don't have these studies already, but that's just my opinion.
    If you have a strong opinion one way or the other you’re probably not a candidate.
    Believe me, I explored the ethics of this to death. Originally I shared your viewpoint 100%. As I read more and more of the literature I changed my mind.
    The thing is, you are right, it wasn’t ethical. It wasn’t ethical until the research came out showing the lack of evidence for bracing efficacy. Have you read any of the papers about this?

    However, I do note that there seem to be several people just on this board alone who don't wish to brace,
    I guess it’s just me not bracing. But Sharon has looked at the literature and agrees with me. Many of the folks who were braced as children and went on to have surgery agree with me. While it is a personal opinion, I didn’t just flip a coin. It was a very carefully measured decision.

    You see, my fear is unnecessarily bracing. From the Danielson Paper (talking about the Nachemson study):

    As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily. One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

    70% of kids are unnecessarily braced. Doesnt this make you pause and think? Read again a comment from Dr Hey’s blog:

    Some adolescents feel “cheated” if they choose the bracing option, and then end up needing surgery anyway. I have had college students weeping wildly in my office, who were treated for years in a brace through middle school and high school who then found out that they needed scoliosis surgery anyway.

    I think the onus is on us, the parents, to try our best to understand the issues. I found out who said the line I (miss)quoted in another post. MAMANDCRM said
    “The way I look at it, my daughter's job right now is to wear this brace and mine is to figure out a way to get her out of it. “

    Her comment stuck in my head.

    Of course, it could just be ignorance about scoliosis treatment on the part of the patient's family also, hopefully the study design requires them to inform the patients about the risks of not bracing based on current data.
    Don’t take this the wrong way but, there is ignorance both ways. There is a lot of blind faith in bracing. Every parent should ask themselves “what am I trying to do?” and understand, the best they can, the evidence pointing to the chances of realizing that outcome.

    I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.
    Yes, but just because you want to do everything to stop something from happening doesn’t mean it is possible. The desire for a cure will not make it happen. What does happen is kids get braced unnecessarily, that we know. Some kids who are braced will go on to have surgery, we know that too.


    Will this study, even if done, actually mean anything for the general population when it's done? If you take mainly people who have probably given their scoliosis to their children genetically, is that representative of the general population?
    I think the design of the study is pretty darn good considering all the obstacles they face. By making it random, it is representative of the general population (of kids with scoliosis).


    "they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs)."

    How does an average of Cobb angles from 30 degrees to 75 degrees mean anything to anybody? Maybe I'm missing something. But it seems to me that the 30 degree curve is going to act a lot differently than the 75 degree curve. Why didn't Weinstein break it up into smaller ranges, say five or ten degree increments so it was more meaningful? Did he not have enough participants in the study to make it meaningful? If so, how does it make it meaningful to the rest of the population?
    Did you read the next paragraph in his blog, he agrees with you and uses the information to make an important point.

    This huge variation in expected progression is one of the reasons why it is difficult to interpret many of the bracing studies, in terms of their effectiveness of treatment, since many of these studies included a large percentage of adolescents who were in this low risk of progression group.

    I am not against bracing. It is just that in our particular circumstance, it didnt make sense. I hope I'll be able to live with myself if I am wrong. Like all the parents here, I love my daughter with all my heart and want to do what is best for her. But, I'm not going to brace her so I feel better about doing something, anything, to stop her curve from progressing.

  8. #53
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    Hi CD, you clearly believe you are making the best decision you can for your daughter. And, yes, the best decision does not always turn out to be the correct one. If there is a 75% chance that answer A is correct, then that's the best choice. That doesn't mean that the answer won't turn out to be B. We just do the best we can and one person's best answer is not necessariy the same as someone else's (or in line with the studies or formulas projecting outcomes). Your decision makes a lot of sense to me. Your daughter is 14 and seems pretty stable. Relatively speaking, she is near the end of this. Some times you have to roll the dice.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  9. #54
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    Quote Originally Posted by mamandcrm View Post
    Hi CD, you clearly believe you are making the best decision you can for your daughter. And, yes, the best decision does not always turn out to be the correct one. If there is a 75% chance that answer A is correct, then that's the best choice. That doesn't mean that the answer won't turn out to be B. We just do the best we can and one person's best answer is not necessariy the same as someone else's (or in line with the studies or formulas projecting outcomes). Your decision makes a lot of sense to me. Your daughter is 14 and seems pretty stable. Relatively speaking, she is near the end of this. Some times you have to roll the dice.
    JIS is a whole different ballgame in my opinion. Higher stakes.

    And scoliosis related to connective-tissue disorders is yet another. I think the presence of these kids in studies ostensibly looking at "AIS" lowers the apparent bracing effectiveness as there is some evidence certain of these cases are held by no brace.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #55
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    CD:

    “70% of kids are unnecessarily braced. Doesnt this make you pause and think?”
    I would have to look at the study, I don’t have time to, but I’m not sure I feel very confident that’s a true statement with the amount of conflicting opinions in this field.

    Nobody is forcing anybody to choose the bracing option. This is America. I feel for the kids who wear the brace and still have to have surgery too, but I was also prepared to face it with my daughter and wouldn’t have regretted the decision. But why do they think it’s okay to sacrifice my child and the others who do respond? Why are they trying to remove my option to help my child? You’re being allowed a choice to not brace, they would be removing my choice. Why would they consider subjecting my child and others to all the risks unnecessarily during surgery and in the future?

    It makes me think that the financial analysts at the insurance companies are trying to remove the expense of bracing for their firms. And isn’t it convenient that what apparently will benefit the insurance companies also benefits the surgeons? And obviously it will, because if you don’t brace, the curves WILL become bigger, I think it was you who showed that with the study in Ireland. And therefore, with bigger curves at maturity, the greater the potential for progression in adulthood let alone in adolescence. And why would they subject these kids who never make it to a surgical level endure a greater physical deformity than they would have had to? And what are they going to do to the kids who are just wearing a brace to try and stall the time of surgery so more growth takes place? Just let them crankshaft? No big deal? Tell them, sorry, but you’re just going to have to deal with it because that’s what your DNA is going to do anyway?

    So we’ll sacrifice the fewer for the many in scoliosis? Why is the eighty plus year old dad of a co-worker getting new heart operations every couple of months when his wife is scared she’s somehow going to have to take care of this now senile old man with a brand new heart for the next twenty years? Why are they not sacrificing in those areas, if necessary, instead of sacrificing the well-being of children who have the rest of their lives to live?

    “Don’t take this the wrong way but, there is ignorance both ways.”
    I don’t think what I am saying is based on ignorance. I think what I am saying is based on reason.

    “Yes, but just because you want to do everything to stop something from happening doesn’t mean it is possible. The desire for a cure will not make it happen. What does happen is kids get braced unnecessarily, that we know. Some kids who are braced will go on to have surgery, we know that too.”
    Obviously

    I think the design of the study is pretty darn good considering all the obstacles they face. By making it random, it is representative of the general population (of kids with scoliosis).
    Are they sure the people signing up really are random? I’m not so sure about that. Seems like the moms who have apparently passed on their scoliosis to their kids would be more likely to sign up for the study if they didn’t like bracing in their youth. What does that do to the validity of the study? As Sharon points out, are they trying to weed out those who might have conditions that might not be representative of the larger scoliosis population for bracing results?

    “Did you read the next paragraph in his blog, he agrees with you and uses the information to make an important point.

    This huge variation in expected progression is one of the reasons why it is difficult to interpret many of the bracing studies, in terms of their effectiveness of treatment, since many of these studies included a large percentage of adolescents who were in this low risk of progression group.”
    This is Dr. Hey responding, not Dr. Weinstein. I’m simply wondering why Dr. Weinstein didn’t make the rates more clear. Or is it Dr. Hey who just picked the rates to report what he wanted to? (Sorry, I don’t have the book in front of me to look). So it looks like the 30 degree curves will progress faster in adulthood than what the real value is? So people like Sharon can worry about her daughter progressing when the real value may be much lower? I simply don’t understand why Weinstein (or perhaps Hey) did that. Funny how the highest rate was separated out, but the lowest rates weren’t and in that case the higher average was used.

    I am not against bracing. It is just that in our particular circumstance, it didnt make sense. I hope I'll be able to live with myself if I am wrong. Like all the parents here, I love my daughter with all my heart and want to do what is best for her. But, I'm not going to brace her so I feel better about doing something, anything, to stop her curve from progressing.
    I completely understand and don’t begrudge you your decisions at all. I have made the hardest decisions in my life during this last year trying to do the right thing for my daughter with completely conflicting information. I know we all are or we wouldn’t be spending so much time on this forum. I really am hoping for the best for all our daughters and sons. I simply believe there is more to this drive to get rid of bracing than meets the eye. I am for options for ALL of us so we can make our own informed, somewhat intelligent decisions to the best of our limited ability.

  11. #56
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    Quote Originally Posted by concerned dad View Post
    Let me get out my crystal ball and predict that sooner or later we WILL get an orthopedic doctors input on this site. And I'll bet dollars to donuts that when we hear from him he will not be singing the praises of bracing.

    (OK, I'm cheating on this prediction but couldnt resist. Stay tuned.)
    CD.... Most scoliosis specialists don't have the time to spend monitoring posts here. I'm afraid that anyone who would have the necessary time might not be the sharpest knife in the drawer.

    --Linda

  12. #57
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    Quote Originally Posted by Pooka1 View Post
    How do you know this? For this to be true you would need proof that bracing translates to less surgical candidates than does watching and waiting. I am unaware of proof for this statement. It implies bracing is known to work and that is not the case.

    Did I misunderstand you again?
    Sharon...

    You've been in quite a mood today.

    The surgeons that we've been discussing are the very same ones who have authored the plenitude of studies that in their minds, prove that bracing works. It doesn't matter what you or I believe, in terms of this debate, as we have been discussing what is on their minds.

    --Linda

  13. #58
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    Quote Originally Posted by LindaRacine View Post
    Sharon...

    You've been in quite a mood today.

    The surgeons that we've been discussing are the very same ones who have authored the plenitude of studies that in their minds, prove that bracing works. It doesn't matter what you or I believe, in terms of this debate, as we have been discussing what is on their minds.

    --Linda
    I think the number of surgeons NOW who think there is proof bracing works (versus hope it works) is smaller than you might think. The articles pointing out the problems with the previous bracing studies postdate the ones that (without proof) claim bracing works.

    As to the literal handful of surgeons (3? 4?) who invent braces, they are a special category and are likely not representative of the great run of surgeons.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #59
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    Quote Originally Posted by Pooka1 View Post
    JIS is a whole different ballgame in my opinion. Higher stakes.

    And scoliosis related to connective-tissue disorders is yet another. I think the presence of these kids in studies ostensibly looking at "AIS" lowers the apparent bracing effectiveness as there is some evidence certain of these cases are held by no brace.
    I think the stress and uncertainty that goes with making decisions for our kids is universal. So JIS, AIS, whatever, my statement wasn't about science, just support
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  15. #60
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    Quote Originally Posted by Ballet Mom View Post
    But why do they think it’s okay to sacrifice my child and the others who do respond? Why are they trying to remove my option to help my child? You’re being allowed a choice to not brace, they would be removing my choice. Why would they consider subjecting my child and others to all the risks unnecessarily during surgery and in the future?
    I don't think anyone is doing any of this.

    It makes me think that the financial analysts at the insurance companies are trying to remove the expense of bracing for their firms.
    Remove the expense of bracing??? Bracing costs a FRACTION of what surgery costs. If anything, the insurance companies would be pushing bracing with every fiber in their being on the merest HOPE it MIGHT work.

    If they are wanting to cut the costs of bracing it's because they see themselves paying out on BOTH bracing and surgery on too many kids. That is likely what they will be doing with my one daughter. The other only had surgery so they saved money on a brace with her. That makes some sense though I still don't believe it.

    And isn’t it convenient that what apparently will benefit the insurance companies also benefits the surgeons? And obviously it will, because if you don’t brace, the curves WILL become bigger, I think it was you who showed that with the study in Ireland.
    If that is true then why do some kids never reach surgery territory despite not bracing?

    Are they sure the people signing up really are random?
    No. That's not how it works. If you agree to enter the study a computer randomly assigns your child to one of two groups. It has zip to do with the parent's preference. Parents with strong preferences never enter the study in the first place.

    As Sharon points out, are they trying to weed out those who might have conditions that might not be representative of the larger scoliosis population for bracing results?
    I'm an amateur but I think this should be given more attention. Marfan's syndrome scoliosis is known not to respond to bracing for example. Although Marfan's is relatively rare in the general population, it is less rare in the population of kids with scoliosis. I think we can guesstimate the number of Marfan's or related cases in any brace study population and just subtract that number arbitrarily from the possible bracing success column. That may be an over statement but I don't think so. I think it would be a step in the right direction to cleaning up the bracing literature.

    Now we still have the case where Marfan's goes undiagnosed in these studies... neither our pediatrician nor our surgeon nor the geneticist think my girls have Marfan's and we know they don't meet the criteria now but there have some mild connective tissue disorder. In any case it is very likely NOT AIS and I'm just saying because they don't have a solid diagnosis, they would be selected for a study on AIS and bracing and still might skew the results.

    It's reasons like this and a million more that make the bracing literature the miasma it is through no fault of the researchers.

    Funny how the highest rate was separated out, but the lowest rates weren’t and in that case the higher average was used.
    I think you are misunderstanding the statements. I think they went as far as the data allowed. If they didn't break out the data into smaller groups it's because the data don't support doing that. The error bars are wide... they are lucky to be able to identify the two groups at all.
    Last edited by Pooka1; 05-16-2009 at 08:55 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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