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Thread: Who Decides?

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    What we do know is that some alternative treatment modalities like Schroth and bracing have been around for several decades and STILL have no evidence of efficacy.
    Interesting discussion (and so far, pretty civil)

    Sharon, I’d like you to consider something. Your argument would ring truer if you were more careful with your use of the term “evidence”. I think if you substitute “proof” for “evidence” in what you are saying there may be more agreement (wouldn’t that be nice).

    Evidence is something that contributes to knowledge about something.
    Proof is evidence that is sufficient to demonstrate the certainty of something.

    It seems to me that evidence for some claims are to be found often. Proof is more elusive.

    Perhaps you are thinking of a different definition. I dunno.

  2. #17
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    I think your proof/evidence distinction is on the mark CD. We use that distinction in society all the time. We arrest people based on evidence. We convict them based on proof (using a standard of evidence--preponderance/clear and convincing, etc.). We see there is evidence that some treatment might help some malady. So we study it further looking to prove it so (or not). My decision to brace with the device we chose was based on personal conversations with the parents of several patients using the same device. The information they provided me is not to be found in a study. Yet it was evidence that the brace could remediate my daughter's curve given the right circumstances.
    Last edited by mamandcrm; 11-04-2009 at 07:25 PM.
    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

  3. #18
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    CD,

    I see that distinction between evidence and proof.

    Two points:

    1. I use evidence to be synonymous with proof because I am assuming when people say they have evidence it is actual evidence that constitutes a proof and not just a flawed observation. I have never distinguished between those two words in parlance.

    2. My use of evidence to mean proof is obviously NOT the reason there is push back. There would be identical push back if I said there was no proof because some people here actually think there is proof certain experimental modalities work. Some people think the scientific literature is gospel and where proof of anything can be found. Some people think anecdotes from lay people constitute proof. There is no getting around that situation with a mere word change. You have to completely boot folks up on why the scientific method is the only game in town and how to rationally approach the scientific literature. Neither of these things is a small task it seems.
    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. #19
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    Quote Originally Posted by Pooka1 View Post
    CD,

    I see that distinction between evidence and proof.

    Two points:

    1. I use evidence to be synonymous with proof because I am assuming when people say they have evidence it is actual evidence that constitutes a proof and not just a flawed observation. I have never distinguished between those two words in parlance.
    There are different levels of evidence. From flawed observation, to empirical observation, to p=.0001 confidence of repeated observations (even then, we're still not sure).

    2. My use of evidence to mean proof is obviously NOT the reason there is push back. There would be identical push back if I said there was no proof because some people here actually think there is proof certain experimental modalities work. Some people think the scientific literature is gospel and where proof of anything can be found. Some people think anecdotes from lay people constitute proof. There is no getting around that situation with a mere word change. You have to completely boot folks up on why the scientific method is the only game in town and how to rationally approach the scientific literature. Neither of these things is a small task it seems.
    I think it might account for some of the pushback.
    If someone feels they have evidence of something, lets say, for arguments sake, oh, - bracing efficacy; and you say there is "no evidence of efficacy"; well that can be interpreted as dismissive.
    When I choose to brace my daughter, I did it on my perception of the strength of the evidence. I knew there was no proof. But for you to say there is no evidence to support my decision makes me feel like a fool.

    I think it would be better to acknowledge the evidence (with associated strengths and weaknesses) and say that the evidence does not rise to the level of proof. As I understand it, that is your view. It just doesnt come across that way all the time. That is your view, isnt it?

  5. #20
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    Quote Originally Posted by concerned dad View Post
    There are different levels of evidence. From flawed observation, to empirical observation, to p=.0001 confidence of repeated observations (even then, we're still not sure).
    I most certainly do NOT call flawed observation any grade of evidence! It doesn't rise to the level of evidence nor does most other things commonly discussed here.

    I think it might account for some of the pushback.
    If someone feels they have evidence of something, lets say, for arguments sake, oh, - bracing efficacy; and you say there is "no evidence of efficacy"; well that can be interpreted as dismissive.
    When I choose to brace my daughter, I did it on my perception of the strength of the evidence. I knew there was no proof. But for you to say there is no evidence to support my decision makes me feel like a fool.
    That wasn't my intention. I use the two words synonymously. I do not think the literature holds "evidence" bracing works because of the studies are fatally flawed. No evidence of any caliber or stripe can come from a fatally flawed study except by pure chance.

    I think it would be better to acknowledge the evidence (with associated strengths and weaknesses) and say that the evidence does not rise to the level of proof. As I understand it, that is your view. It just doesnt come across that way all the time. That is your view, isnt it?
    That's my view. But I wouldn't call anything in the literature evidence because of the fatal flaws. Recall my professor's story about how his professor paged over the methods section of his draft, saw the controls were inadequate and threw the paper in the garbage in front of my professor. That made an impression on me believe you me. I am forever grateful he told me that story. Lesson learned.
    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."

  6. #21
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    Quote Originally Posted by Pooka1 View Post
    I most certainly do NOT call flawed observation any grade of evidence! It doesn't rise to the level of evidence nor does most other things commonly discussed here.
    Well, we may have to agree to disagree on this. But it seems that by saying there is no evidence, you are lumping all existing evidence in with flawed observation. Take the Daniellson paper which follows up on the Nachemson trial as an example. It contains evidence of efficacy even though the original trial had flaws in the design. The evidence just doesnt rise to the level of proof - I dont think anyone has claimed it does.

  7. #22
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    Quote Originally Posted by concerned dad View Post
    Well, we may have to agree to disagree on this. But it seems that by saying there is no evidence, you are lumping all existing evidence in with flawed observation. Take the Daniellson paper which follows up on the Nachemson trial as an example. It contains evidence of efficacy even though the original trial had flaws in the design.
    I have qualified the term "evidence" at times by saying "there is some evidence" for a hypothesis or things like that. I do NOT use that to mean flawed evidence. I use that to mean that as far as we know, it isn't obviously bad but it is either too spotty or too out of line with the bulk of the other observations.

    That Danish Twins study component dealing with scoliosis constitutes NO evidence for their conclusions for several reasons I have mentioned. It is known to be flawed on several counts (scoliosis rate doesn't match general population, known problems with self-identified zygosity, etc.) besides being out WAY out of line in terms of concordance with all other studies as far as I can tell. Just being out of line would not be a problem but in this case we know why it is out of line - GIGO.

    Now that Danish Twins registry is probably used to get evidence for other things... things that can be verified and are not self reported with a known high error rate. But I am wary of any other study that uses the Danish Twins database now.

    The evidence just doesnt rise to the level of proof - I dont think anyone has claimed it does.
    I completely disagree with you that people here agree that there is no "proof" bracing works. People have claimed it and believe.

    It is clearly not true that had I used "proof" instead of "evidence" that there would be no push back. Some people clearly do not understand the limitations of the literature (not just the bracing literature) and think it contains proof of efficacy.
    Last edited by Pooka1; 11-05-2009 at 06:01 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."

  8. #23
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    "...you gave your daughter many more years of growth prior to surgery, if that ever becomes necessary...and that's a good thing"

    Balletmom-This is exactly part of my thinking. My daughter has grown over 4 inches since I was told she absolutely HAD to have surgery right away, or else (that was 2 years ago). And, she is still growing. Since then, she is currently stable due to Cheneau/Scrhoth (To those who suggest she could have stabilized on her own-her curve was/is moderate-severe, Riser 0, grew over 4 inches during that time, 2 years ago the surgeon said "do not wait until summer to operate" b/c of progression, which at the time was only 5 months away). Her alignment and posture are also significantly improved, and her lung capacity, which is supposed to be reduced, is over 100%.

    I will never regret waiting, even if she ends up with surgery. Since now is the crucial time to at least try not only to help her scoliosis, but also to do anything to figure out why she has it (I applaud DINGO on his search), I don't understand the big rush and all of the fear tactics that have been shoved in our faces for years (and yes, some were fear tactics-old outdated statistics about higher suicide rates-is this really something to shove at a parent when their child is 7? Give me a break). While scoliosis certainly makes life more difficult, in most cases, it is not an emergency. Her specialist in Spain takes a fearless, but not unrealistic approach-if she wants to get surgery when she is 18 or 20, then fine (she is 14). But, until then, let's see what can be done. And, yes, I find it ridiculous and pathetic that we have to travel to Spain to get treatment that we trust.

    I am also using this time to try to figure out why she has pain, and ways to reduce it. There is no guarantee that fusion will remedy her pain (if a surgeon guarantees this, beware) and nothing scares me more than having her undergo fusion, only to continue to be in pain afterwards. She does not care much about how her back looks, and said she would have no problem living with a crooked back, so right now her image is not the problem. She does have a small syrinx, which according to the neuro can't be operated on. I am told this is not significant, but I am not convinced. They order MRI's for scoliosis patients to rule out syrinx, how can this not be significant? It runs T2-T10, right where the apex of her curve is. I will not stop searching until I have answers, or until either her curve progresses further, or she chooses surgery over our current treatment. For all any of us know, in waiting, the surgical techniques may be that much better in the near future.

    I will never take the orthopedic surgeon's word at face value in regards to what approach we "should" take. I do not understand how or why it is allowable on this site for the monitor to shut down threads that offer alternative ways of thinking or advice even, while forum members can openly refer patients to orthopedic surgeons left and right. Parents are capable of making their own decisions regarding their children. No one here has to save them. Of the 4 orthopedic surgeons I went to, 3 made either blatantly large mistakes or blatantly incorrect predictions concerning my child's scoliosis. And, they are all considered very reputable, linked to major universities and hospitals. Sure, they may be correct in the end, but they are not correct right now. There would have been no problem for someone on this site to advise me to go to any one of them. Yet, god forbid if someone had referred me to Schroth or the specialist we see in Spain-all hell would have broken loose. Interesting since what we are doing now is the only treatment that has made any significant difference for my daughter (and we have tried many). I would give anything to have had a parent come to me with this information when my daughter was 7-and not have had to find it on my own years later.

    I will post all of my daughter's statistics in the future. I do not want to post anything too prematurely. We still have a long road to go.

    One thing I have learned in all of this, is to focus less on the numbers, and more on quality of life. That includes the interaction between patient and physician.

  9. #24
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    Thanks for posting bas2101. I agree that people are capable of making their own decisions and that walling off information that others have decided is unreliable is not right. (Point it out, if you like [once], then move on.) There may come a time when I want to know more about Schroth therapy for my daughter, and how it has worked for people, and I hope that I could find that information here, without having to hide behind PMs, which is what people on this site do who do not want to deal with remonstrations that they are ignorant, wrong or lying.

    I'm sorry that you have had such bad experience with orthos here. I realize that, in addition to finding a treatment for my daughter that appears to be working, I also am fortunate to have a doctor who is not dismissive and will not "fire" me for raising topics and issues with which she does not agree.

    I hope to hear more good things about how your daughter is doing in the future.
    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

  10. #25
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    Quote Originally Posted by mamandcrm View Post
    I'm sorry that you have had such bad experience with orthos here. I realize that, in addition to finding a treatment for my daughter that appears to be working, I also am fortunate to have a doctor who is not dismissive and will not "fire" me for raising topics and issues with which she does not agree.
    You are fortunate indeed. I had exactly what you describe happen to me when I told our former ortho back in late 2003 that we were inquiring about VBS for our son. She dismissed the idea because she said it was too new (that was the worst thing she could find to say about it, btw). She never really put much stock into what parents said - she felt she was the doctor and that was that. And she pretty much did "fire" me for pursuing another option with another doctor - or maybe it would be more accurate to say we fired each other

    Anyway, it was the best thing I could have done. Not only has VBS worked out well for my son so far, but it is so refreshing to deal with a doctor who does not have a big ego and who in fact actually WELCOMES a parent's thoughts when it comes to their child's treatment.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #26
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    Bas2101, you make a VERY compelling case.

    In general, I may lean to towards the opposing view. But you have given me something to think about.

  12. #27
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    Quote Originally Posted by Ballet Mom View Post
    You really need to get off this faith/believer trip you're on. Get over it and move on with your life. You are truly insulting and I really don't understand why this forum continues to let you antagonize everyone with your harangues. I question why Linda allows it.

    I'm sure your opinion on bracing is so much more evidence-based than Jean Dubousset, the eminent orthopedic surgeon, who sincerely believes bracing works.
    Reading every post would be a full time job. If you want to report a post, please feel free to do so.

  13. #28
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    bas2101,

    I just want to say that the way I deal with the question of who to see and who knows best how to treat my daugther is that I see several practitioners. Listen to all they have to say/offer. Then go from there. We have been on this road for over 5 years. I see her ortho every 4-6 months. I have her in a Spinecor so I see the Chiro that prescribed it every 3-5 months. I also see her neurosurgeon once a year to deal with the Chiari/Syrinx.

    The orthopedic and Chiro have had very different views and opinions and even Cobb measurements over the years. I listen to it all and go from that point. The who decides in this is me, because none of them have all of the answers, especially when you are dealing with all of these issues.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  14. #29
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    BTW, I would definitely be looking more into the Syrinx. Have the MRI reviewed by another NS or two or even three. If it has been more than 6 months to a year since the previous, request another, as the Syrinx may be changing and this can and does lead to pain and a host of other symptoms.
    Have they ruled out Chiari or tethered cord?

    In my daughter's case her decompression surgery IS what stopped the progression of the scoliosis. BECAUSE the syrinxes are still present AND she is so young and still growing, I have chosen to brace her in the Spinecor.

    visit asap.org to find out more on Syringomyelia.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  15. #30
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    A question

    A question for the crowd using Spinecor...

    If Spinecor was offered by both board certified experienced pediatric orthopedic surgeons and chiros (who can't use the "Dr." title in the UK), which one would you go to for the brace?

    I think we all know the answer to that.

    Chiros, being practically the only people in the US offering the brace, have a built in clientele that they would not otherwise have. That is "a" reason to go to a chiro at the moment.

    Rivard/Coillard, orthopedic surgeons as far as I know, I'm sure never saw that coming and would love to change that. Unfortunately their pubs aren't changing any opinions within the pediatric orthopedic surgeon community. I'm reasonably sure though not certain that they didn't see that coming either.

    If there is ANY other reason to take a growing child who doesn't have pain to a chiro, I don't know what it is. Perhaps someone can edify me on that.
    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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