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Thread: Who Decides?

  1. #1
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    Who Decides?

    I would like to know who decides that orthopedic surgeons are the only acceptable physicians to treat scoliosis? Where is this written? Is this scoliosis law, or what over time, has become what is accepted?

    Over the last 7 years, my daughter has seen 4 top pediatric orthopedists and orthopedic surgeons in NYC, whom all specialize in scoliosis. If I had followed their advice, she would have either 1) had years of growing rods with the 90% expectation that fusion would follow in the end 2) had 10 years of bracing with the 90% expectation that fusion would follow in the end.

    One miscounted her ribs (she only has 11 sets), which in turn affected his surgical plan (I had to tell him how many sets she has). Another told me I would have to pay him for an additional visit if I wanted everything he advised in writing. Another said her surgery "could not wait until summer," which at the time, was only 5 months away (This was 2 years ago. Today she is not dead, her heart is not crushed, her curve is stable due to treatment sought elsewhere, she has grown over 4 inches (and still growing), and she has over 100% lung capacity. This is no way suggests she is in the clear, but obviously surgery could wait).

    None of them found her Marfan-like symptoms (her PT did), other than ordering an MRI, none of them even attempted to find an underlying cause for her scoliosis (I have had to do this relentlessly on my own), none of them checked her lung capacity (her PT and European scoliosis specialist did), none of them addressed her pain (several of her therapists have at least tried), and none of them offered anything in the way of "prevention," other than what I listed above.

    So, then why and how are pediatric orthopedic surgeons the "only people with the requisite training to treat scoliosis in children?" Please, I would like to know who decided this. Is it the monitor who is shutting down people's threads because they are exploring other options? Did NSF forum members make this decision? The Scoliosis Research Society? The American Surgical Society? Who?

    While pediatric orthopedic surgeons are A choice in treating pediatric scoliosis, they are not the ONLY choice. And, no one has the right to determine that they are. If they knew all of the answers, none of us would be on this forum losing our minds daily in search of such answers. If/when my daughter gets surgery, THEN I will go to an orthopedic surgeon-surgery is what they do best. In the meanwhile, I am NOT convinced they have enough expertise in prevention-other than dismissing their patients who seek advice elsewhere.

  2. #2
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    I think there's concern that a child with an aggressive curve will fail to check in with an orthopedic surgeon, and thus miss the best window for surgery.

    Beyond that, I'm in agreement. Orthopedic surgeons know surgery, for cases that progress that far. But since there is no solid medical information on what to do *until* a child/adult needs surgery, neither a surgeon nor any other medical doctor is much help for pre-surgical patients beyond simply tracking the progress of the curve.

  3. #3
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    Your daughter wears a Rigo-Cheneau brace currently, isn't that correct? Did you get it here in the states, or did you travel to Europe to get it? If you got that brace here in the states, it had to be prescribed by a medical doctor from what I understand. I don't know if you can get braces in Europe without a doctor's prescription, perhaps it's different. (I'm not sure how the Spinecor gets through the cracks without an MD's prescription.)

    I would be interested in knowing who the doctors are that prescribe Luke Stikeleather's Cheneau brace, I think it would be very helpful to people on this forum. Anyone whose kid is wearing one care to disclose who the doctors are that are prescribing them?

    I am very pro-bracing and that is one of the reasons I believe kids should be being seen by a pediatric orthopedist...just to get a brace.

    The second reason is exactly what hdugger stated, aggressive curve progression. The first surgeon we went to told me a story of a high school water polo player who wanted to go to the state water polo championship, when she finally came back in she had a curve of between 112 and 120 degrees. And the surgeon said it was a terribly difficult surgery (even though he's a really great spine surgeon). Surgeons don't want to see terrible things happen on the operating table either.

    Third, the orthopedic surgeons are also required to find other causes of the scoliosis such as tumors, etc. Some scoliosis is due to genetic syndromes that need to be managed. Just because your daughter has Marfan-like symptoms doesn't mean she has Marfan's. And I believe that condition and diagnosis would be managed by her pediatrician, not the surgeon, other than monitoring the scoliosis curve.

    I agree that if surgeons continue their push to discontinue bracing, their usefulness becomes much less, other than monitoring the curve for progression and checking for other serious diseases. I hope it doesn't happen because I would hate to have to fly to Europe for treatment where they still believe in and support bracing.

  4. #4
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    My daughter wears a Rigo-Cheneau made by Luke at Orthotic Solutions. She was not specifically prescribed a Rigo-Cheneau. She was prescribed a day-time TLSO by her doctor (that's what it said on the prescription), and the Rigo-Cheneau is a type of TLSO, as is the Boston brace and others. I walked into the fitting expecting a Boston brace because I wasn't aware that there was an alternative. It was just our good fortune that Luke, who is the local ortho to us, specializes in the Rigo-Cheneau.
    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

  5. #5
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    I am not disagreeing that orthopedic surgeons have a place in scoliosis-clearly they do. And, a very important one in cases where a patient chooses surgery. But, I do not agree that they are the only physicians worthy of trying to treat scoliosis. And, their efforts at focusing on prevention are weak at best-at least in my experience and the experiences of many other parents I have spoken to who are trying to avoid surgery.

    For a patient/parent of a patient who is trying to do everything they can to avoid surgery, what is the point in continually visiting an orthopedist who often times dismisses a patient's "alternative"efforts, while at the same time has nothing better to offer? It is very easy to get scoliosis x-rays from a pediatrician, in order to check for progression. While, orthopedists seems to be the "gods" of Cobb angle reading, having the same radiologist monitor x-rays will show progression.

    I did not get my daughter's brace in the US. I got it in Spain. A prescription from her pediatrician was sufficient, and this might have been for my insurance purposes only. I do not believe you need a prescription specifically from an orthopedist to get Cheneau brace from Luke, or Grant Wood-both Cheneau makers in the US. I believe a prescript from a physician is enough to get any brace-I know several parents who have done so. I do not know who, if any orthopedic surgeons prescribe the Cheneau brace.

    If orthopedists don't want to see terrible things happen to patients on the operating table, then it might behoove them to work in collaboration with patients who choose not to follow their advice at face value. In doing so, they wouldn't undermine a patients ability to choose for themselves. Just because a surgeon sees a magic 40-50 degree Cobb angle reading, and suggests surgery as the only option-there are still many patients who do not want to choose this option, and are then sent running for the door with nowhere left to turn. I know of orthopedists who refuse to see patients who do not follow their protocol, or who have demeaned them to the point of no return. I am not just speaking from my own experience. Luckily, I figured out where to turn after 5 years of looking, and it wasn't to any of the 4 orthopedists we visited in NYC.

    Again, if my daughter eventually gets surgery, an orthopedic surgeon will obviously be the only option. But, while we are doing whatever we can to avoid it, I do not believe it is the only option-at least for us. If there were more orthopedists who were willing to be opened minded toward their patient's decision making, I might change my mind. I understand a few exist out there, however, I have yet to find one.

  6. #6
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    Quote Originally Posted by bas2101 View Post
    [...]THEN I will go to an orthopedic surgeon-surgery is what they do best. In the meanwhile, I am NOT convinced they have enough expertise in prevention-other than dismissing their patients who seek advice elsewhere.
    Surgeons don't have expertise in prevention if you equate that to having evidence.

    The difference between surgeons and alternative treatment purveyors is that they admit this.

    Nobody has evidence. Some, including some surgeons, have hope and are trying to gather evidence in a rational manner. Instead of trying to gather evidence, some alternative treatment purveyors are just taking people's money and experimenting on kids without calling it that unbeknownst to the parents.
    Last edited by Pooka1; 11-04-2009 at 01:19 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."

  7. #7
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    Quote Originally Posted by bas2101 View Post
    If there were more orthopedists who were willing to be opened minded toward their patient's decision making, I might change my mind. I understand a few exist out there, however, I have yet to find one.
    Open-minded is one thing. I doubt you'll find a surgeon who will say that braces have been proven to fail every time and that there is no population of kids who can be helped by bracing. They are open-minded.

    But you can't expect them to "bless" anything the parent/patient wants when there is no good evidence in support of it. They are professionals who are required to act in an intellectually honest manner and so have to admit when there is no evidence irrespective of what the patient/parent wants. That isn't being close-minded... it is just being realistic.

    Now that's not to say they won't try unproven treatments like bracing. Bracing should be studied to rule it in or out once and for all if possible.
    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. #8
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    Plenty of alternative practitioners also admit that they don't have proven evidence that their treatment will necessarily help a particular patient. It is those who do that give everyone else a bad name.

    And, there are surgeons who I suspect are willing to experiment on patients. I was told by one surgeon that my daughter had to have EPO (Erythropoietin) to reduce the need for blood transfusion. He would not allow her to donate or receive donated blood. She was at no higher risk than any other scoliosis patient for blood loss, and no other surgeon suggested or worse yet, forced this option. I found it very interesting that at this time, this surgeon was conducting research on "EPO use during scoliosis surgery" at the hospital in which he worked. And, he was more than willing to take my $500 to tell me this, in addition to the thousands he would have cost to do surgery (this of course was after I had to tell him how many rib sets she had-the head of pediatric orthopedics at a world re-known hospital mind you).

    I don't expect any physician to bless anything they don't believe in. But, I also don't expect them to dismiss anything they are unfamiliar with.

  9. #9
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    Quote Originally Posted by bas2101 View Post
    Plenty of alternative practitioners also admit that they don't have proven evidence that their treatment will necessarily help a particular patient. It is those who do that give everyone else a bad name.
    You're right. I was wrong to say all alternative treatment purveyors are dishonest. That isn't true.

    And, there are surgeons who I suspect are willing to experiment on patients. I was told by one surgeon that my daughter had to have EPO (Erythropoietin) to reduce the need for blood transfusion. He would not allow her to donate or receive donated blood. She was at no higher risk than any other scoliosis patient for blood loss, and no other surgeon suggested or worse yet, forced this option. I found it very interesting that at this time, this surgeon was conducting research on "EPO use during scoliosis surgery" at the hospital in which he worked. And, he was more than willing to take my $500 to tell me this, in addition to the thousands he would have cost to do surgery (this of course was after I had to tell him how many rib sets she had-the head of pediatric orthopedics at a world re-known hospital mind you).
    That sounds dishonest. That said, I doubt many statements that are attributed to surgeons that are reported here were actually ever said, especially after I have thought I understood what I was being told only to discover I didn't. It's a matter of not having the same knowledge base and how certain things can be interpreted in more than one way and that's all BESIDES simply not hearing correctly or misunderstanding in other ways.

    Until they go through many iterations here and a few passes through the surgeon, I don't believe some of my own claims about what our surgeon says.

    And there are statements attributed to surgeons on this group that I would bet my house are not what the surgeon said/meant. It's not matter of people lying; They just don't have the tools to understand completely.

    I don't expect any physician to bless anything they don't believe in. But, I also don't expect them to dismiss anything they are unfamiliar with.
    I don't expect surgeons to dismiss anything for which they are unfamiliar with the evidence case. That is unprofessional. But unless we are talking extreme fringe treatments, I expect any experienced surgeon to be aware of the evidence cases for most alternative treatments. I mean I would be shocked if Samdani would make that statement on that torsion rotation video about how there is no proof PT permanently alters the course of scoliosis if he wasn't aware of the facts associated with that kind of statement. This is their game and patients have a reasonable expectation surgeons are good at their game.
    Last edited by Pooka1; 11-04-2009 at 02:44 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."

  10. #10
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    Medicine is an infinitely complex field, as is virtually any discipline once you start investigating aspects closely. Nobody in the field knows everything, in fact daily they know proportionately less and less because of the rapid expansion of published studies in hundreds of biomedical journals which no one can possibly keep up with thoroughly. The further away from one's narrow specialty, the less secure is one's mastery of the subject, though there are many cases of cross-disciplinary specialists.

    With that consideration as background, it is understandable that pediatricians and other health care practitioners would tend to defer to orthopedists in treating scoliosis patients. Orthopedists specialize in deformities or functional impairments of the skeletal system. For better or worse, the ultimate method they have adopted for correction is surgery.

    Physicians are the health care practitioners with typically the longest and deepest training in medical care. They have consequently from time immemorial been the anointed primary care supervisors. Most other specialties such as chiropractic and physical therapy developed fairly recently.

    But still, nobody in any physician specialty knows everything, nor of course do those in others. What continues to be astonishing to me is how readily orthopedists dismiss evidence contrary to their current orthodox position, despite their incomplete knowledge of physical therapy. It appears that they do not *want* to know everything, particularly if the evidence, and there is plenty of it for non-surgical scoliosis treatment in journals they see in PubMed, would lead a parent or patient to a practitioner in another field. Thomas Kuhn, the famous historian of science, wrote a book about this phenomenon in 1962, but it's still surprising to see the principles he discusses in action. (The Structure of Scientific Revolutions). I think we are approaching a paradigm shift.

    So the parents who are ahead of the paradigm shift, who instinctively sense that there has to be a way to intervene and prevent progression of a scoliosis, and not just wait helplessly and watch it get worse, often have to override the advice of their orthopedist. Thank heaven for the resolve and tenacity of parents like bas2101.

  11. #11
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    "I doubt many statements that are attributed to surgeons that are reported here were actually ever said."

    I am not sure if you are referring to what I have posted, or the forum in general. As for what I have posted, I have most of what I included either in writing, and/or there was another person in the room who was also told what I was told. While there always room for interpretation differences, I am not convinced this is the case in many of my claims.

    "Surgery could not wait until summer." Why? Because her scoliosis could wildly progress. There is no misinterpretation here, he was simply wrong. I have it in writing.

    "Miscounted ribs." He admitted the mistake after I brought it to his attention. And, it changed his surgical plan-where he would fuse. No misinterpretation.

    "Had to pay for another visit to get advice in writing." I asked for everything the ortho said during a visit, in writing-including when he said he was quite sure her scoliosis "was 10 degrees worse." He said I had to pay for another visit to get this in writing. I had to threaten to report him to get the information he told me. And, he was wrong-her scoliosis at that time was stable. No misinterpretation, with the exception of +/-Cobb angle reading.

    Both plans-growing rods then fusion, and 10 years of bracing then fusion is what was suggested. The 10 years of bracing was recommended without much hope, but was all that was suggested. I have it in writing. I was also told if we did nothing-then 90% chance of fusion.

    EPO mandatory-in writing. There was no getting around it other than going elsewhere.

    As far as what they didn't do-there is no misinterpretation here-they didn't do it.

    And, there is no misinterpretation of the several times I was told what I was doing elsewhere "is wrong."

    Writer-you put into words what I trying to say, much better.

  12. #12
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    Quote Originally Posted by Writer View Post
    But still, nobody in [nonbeliever community] knows everything, nor of course do those in others. What continues to be astonishing to me is how readily [nonbelievers] dismiss evidence contrary to their current [nonbeliever] position, despite their incomplete knowledge of [alternative therapies]. It appears that they do not *want* to know everything, particularly if the evidence, and there is plenty of it for [alternative treatments] in [mainstream locations], would lead a parent or patient to a practitioner in another field.
    So much of what is written about alternative treatments... the persecution, the disbelief, etc. is directly mapable onto other issues in society that are known or suspected to be counterfactual. That should concern you that you are using a similarly constructed argument.

    Also, what is considered "evidence" in certain alternative treatments is simply concidered bad science in the mainstream.

    So the parents who are ahead of the paradigm shift, who instinctively sense that there has to be a way to intervene and prevent progression of a scoliosis, and not just wait helplessly and watch it get worse, often have to override the advice of their orthopedist. Thank heaven for the resolve and tenacity of parents like bas2101.
    People sense a lot of things. Some sense Napoleon in the room with them. Many people have claimed to be ahead of the paradigm shift only to be revealed that they were just plain mistaken.

    Wishful thinking and wanting to prevent progression don't automatically majick an effective treatment into existence.

    The tenacity of parents like BAS2102 might be rewarded or it might just be the bazillionth hope that goes unanswered. You can't know at this point which way it will go unless you claim to be clairvoyant. 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.

    Evidence is the game of the realists. Faith is the game of the believers.
    Last edited by Pooka1; 11-05-2009 at 08:32 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."

  13. #13
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    My tenacity may indeed be the bazillionth hope that goes unanswered. Chances are it will be. But, until I know this for sure, I will not follow the advice of orthopedic surgeons, who in their minds, have already guaranteed that such hope goes unanswered.

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    Quote Originally Posted by bas2101 View Post
    My tenacity may indeed be the bazillionth hope that goes unanswered. Chances are it will be. But, until I know this for sure, I will not follow the advice of orthopedic surgeons, who in their minds, have already guaranteed that such hope goes unanswered.

    I don't know any of your daughter's Cobb angles at any times, but you can be proud of yourself that if in case your hope does goes unanswered, you gave your daughter many more years of growth prior to surgery, if that ever becomes necessary...and that's a good thing. Kudos to you.

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    Quote Originally Posted by Pooka1 View Post
    So much of what is written about alternative treatments... the persecution, the disbelief, etc. is directly mapable onto other issues in society that are known or suspected to be counterfactual. That should concern you that you are using a similarly constructed argument.

    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.

    Evidence is the game of the realists. Faith is the game of the believers.
    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.

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