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Thread: Changes in scoliosis treatment due to Scoliscore

  1. #31
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    Lightbulb Attempts at treating scoliosis since 3000BC

    http://drlloydhey.blogspot.com/2008/...t-3000-bc.html

    Until the early 20th century there were only non-surgical methods for the last 5000 years attempting to correct scoliosis.

    The above link is a short summary of scoliosis tretments. The method of my original treatment in 1956 is pictured there.
    Last edited by Karen Ocker; 07-07-2011 at 03:21 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  2. #32
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    Quote Originally Posted by Karen Ocker View Post
    http://drlloydhey.blogspot.com/2008/...t-3000-bc.html

    Until the early 20th century there were only non-surgical methods for the last 5000 years attempting to correct scoliosis.

    The above link is a short summary of scoliosis treatments. The method of my original treatment in 1956 is pictured there.
    Karen, thanks for providing some much needed perspective.

    When viewing the entire arc of scoliosis treatment, folks should be falling all over themselves thanking surgeons rather than criticizing them in my opinion.

    If non-surgical treatments worked then we wouldn't even be discussing surgeons, surgery, etc. etc. I am directing that remark ESPECIALLY to Schroth which has been around for over 90 years and still said to be a fringe treatment even in Germany. Folks would do well to keep that in mind.

    Surgeons are the good guys in this game. If they haven't yet come up with non-fusion surgical treatments or non-surgery corrections then there is an honest, REAL reason for it that doesn't entail moral turpitude or ignorance for heavens sake.

    Biology is just more complex than even sending men to the moon and returning them safely. It just is. Surgeons are not to be faulted for that. They are the only game in town for helping folks with large curves.
    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."

  3. #33
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    Quote Originally Posted by Pooka1 View Post
    Karen, thanks for providing some much needed perspective.

    When viewing the entire arc of scoliosis treatment, folks should be falling all over themselves thanking surgeons rather than criticizing them in my opinion.

    If non-surgical treatments worked then we wouldn't even be discussing surgeons, surgery, etc. etc. I am directing that remark ESPECIALLY to Schroth which has been around for over 90 years and still said to be a fringe treatment even in Germany. Folks would do well to keep that in mind.

    Surgeons are the good guys in this game. If they haven't yet come up with non-fusion surgical treatments or non-surgery corrections then there is an honest, REAL reason for it that doesn't entail moral turpitude or ignorance for heavens sake.

    Biology is just more complex than even sending men to the moon and returning them safely. It just is. Surgeons are not to be faulted for that. They are the only game in town for helping folks with large curves.
    People defending the government could expose the same argument to people claiming for more attention to their problems. They could say: take it easy, your problem is being treated by politicians, who are the best guys in the world. Dishonesty and selfishness not exist in that kind of people because they were born in other planet much better than Earth. If your problem is not yet satisfied in a best way is because is impossible to do something better yet.
    That kind of arguments from people involved too in the problem and supposedly not in the solution, really scares me. It remembers me the darkest age of my country with military dictators, when many civil people not in government, exposed the same kind of arguments to the people criticizing Ďthe good guysí, not realizing that such critique was literally the worst that they could do.. I think that everyone knows what happened with them.

    It seems that some people nowadays have that kind of thoughts about that people belonging to some kind of community (determined by some specific job or knowledge) are different form the rest, as if they come from a wonderful world to solve the problems of mortal people without any personal interesting in doing that.
    But in the case of scoliosis is difficult to determine exactly who are the people involved in the solution, all the stakeholders. Without any doubt the medical community or system health (Iím not sure the name of that organization) is involved, but surely not only them. All people taking decisions about what to do with the scoliosis problem of that community are surgeons? Governments have nothing to do in the solution of that problem? Companies involves in the business around vertebral fusion, have not economics interests? May we say that we live in a Wonderful World?

    What is expected to do by the people analyzing the reclaim of people in such kind of problem, mainly if they are not part of the solution and are affected by that problem too, is instead of criticize that people, analyze if it is a reasonable claim or not. For instance if parents worried because their sons could have appendicitis, claims for a better solution for that problem.. surely all could see it as a reclaim with not much foundation. If people affected by a new and terrible disease that emerged last week, claim for a solution that they not have yet, nobody could say that claim have not foundations, even they have not yet foundations to criticize people involved in that solution.

    So that are the issues that people analyzing the claim of people affected by scoliosis should to take in mind. Are they receiving a sufficiently satisfactory solution? Could they be receiving something better? Thatís the question at least in first instance, not if surgeons are the best guys in the world and people expecting something better hate them because they are ignorant, evils or desperate.
    Last edited by flerc; 07-08-2011 at 11:53 AM. Reason: english

  4. #34
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    I think we have some sort of bottom line...

    Conservative treatments through the ages have had a chance to prove themselves and they have failed compared to surgical treatments. There is no proven conservative treatment.

    It is hard to imagine a brace or PT approach that is even likely to reliably pan out given the evidence in hand at the moment. That doesn't mean it's impossible.

    That leaves surgery as the best hope going forward. And that does not imply anyone is satisfied with the status quo. There are likely very few surgeons whose living would be affected if AIS fusions went away. That's why the argument that surgeons don't want to invent a better way can't be taken seriously.

    In contrast, the vast, VAST majority of fusions are for non-AIS conditions as far as I know. Because there is evidence in hand that many if not most of these fusions are not needed, a case can be made for incompetence or worse here.

    There are probably not a million ways to do fusion and non-fusion surgery for scoliosis. There is research on both at all times. I suggest whether or not the level of research is commensurate with the level of research into other medical problems is a question that nobody in this sandbox can answer.
    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."

  5. #35
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    'Conservative treatments have failed compared to surgical treatments.'
    'There is no proven conservative treatment'

    Sure Iím not the only one, thinking or knowing that really exists people in the world not needing surgery because conservative methods. That is say, if that methods had not been followed, surgery surely was needed. May be they need it in some moment? I think nobody may demonstrate that not, but then we should to conclude that they not show to be effectives only because has not transcurred enough time; most of new conservative methods appeared around 2 decades ago. If we only consider what happen until the end of life, we also may conclude that new fusion techniques don't prove to give a quality of life better than the old ones, but I think you are referring about that if exists succesful cases with conservative methods, they are not significants compared with surgery.

    'Conservative treatments through the ages have had a chance to prove themselves'

    Conservative treatments was proved in so many cases?. May we say that is really great the percentage of people without other option than surgery trying before specific conservative methods? Iím not sure about that. I know many (really so many) cases of people taken surgery or her sons after doing only what surgeons said them what to do, so they not do nothing until a rigid brace was recomended, but without combining it with something specific to scoliosis (not of course something like the old physiotherapy or swimming) . If brace was showing to not be enough, instead of removing it and trying with something else or complementing with something else, the curve was left to increasing until a surgical level or close and something like another watch and wait was followed, or surgery was done in a short time or when complications appeared.
    Of course I not consider that, a fail of conservative methods nor a proof that braces are not usefull.

    Sure there are much cases failure with conservative methods, but we must to take in mind that there are so many different methods (based over really very different principles) as different kind of scoliosis cases are. Odds that some case would be treated by the corresponding treatment is not precisely so high and not exists something like an expert in non surgical treatments than depending the particular case, recommend the best treatment for that case. In our society the help that someone could give to others is a bussiness, so all the proffesionals of conservative methods says that her method is the best for us, but it not necessary means dishonesty, they only know about what they do and very little or nothing about something else that could be the best in our case. Maybe surgeons are not the exception.

    But what could happen if someone with a real great knowledge about all the principles behind the conservative methods (and not just only joining them as a Frankestein) recomend according the case, the best that should be followed?
    I hoped that about surgeons .. I knew they donít believe in alternative methods (except braces in some cases), but I hoped they would help me after saying something like as Well, if you want to try with conservative methods.. I donít agree and Iím sure is a waste of time ok? but if anyway thatís what youíll try.. what dreamer I was some years ago.. but I remember that someone here seems had more lucky in this sense..

    We also must consider that even some of the current methods are based over scientific researches, there are developed mainly by physiotherapist or osteopaths. Not only surgeons but all doctors stood aside.. Spinecor and Vojta are surely two of the only one exceptions.
    So I think there are really many reasons about why non surgical methods seems up today to be not much effectives.. I could talk so much about that, but it could seems Iím trying to write a book in this thread..

    ĎThere are probably not a million ways to do fusion

    No matter what kind of improvements could be done, vertebral fusion has a limit that could not be surpassed: rigidity and irreversibility. Well, in fact Iím not sure about that.. it's impossible to replace some part of the bone but something as an artificial disk?.. well, I know I have not any knowledge to believe something like that, but we live in the XXI century, I donít know if something is really impossible today, regardless of course the amount of the inversion that would be required. But if it could improve in a really high way the quality of life of much people..

    .. and non-fusion surgery for scoliosis. There is research on both at all times.í

    I make a great distinction between individuals projects of some surgeons and those from medical community. I have not checked it at all yet, but I think that medical community is not making researches about other kind of surgery for scoliosis than vertebral fusion.. it would be a good notice for me to know Iím wrong.

    Quote Originally Posted by Pooka1 View Post
    There are likely very few surgeons whose living would be affected if AIS fusions went away. That's why the argument that surgeons don't want to invent a better way can't be taken seriously.
    In contrast, the vast, VAST majority of fusions are for non-AIS conditions as far as I know. Because thdere is evidence in hand that many if not most of these fusions are not needed, a case can be made for incompetence or worse here.
    MY GOD!! I have never realized this!. I have never had so much expectation about a change of paradigm form medical community, but now.. We are in the WORST scenario that we could!. That is, we are the smallest group of clients of a solution not much acceptable for us (at least in my opinion), but at least reasonable acceptable for the majority of the rest of clients. I think that, because hernial disks, spondylolisthesis and so on, need fusion of really so few vertebras.. what is intended in this kind of scenarios is instead of looking for a best solution, to try that the current solutions would be acceptable also for the smallest group.. scolioscore is coming for that??.. well, in fact I'm just thinking out loud.. and I believe in coincidences, but.. the scenario really could not be worst. The majority of surgeons could think there is not enough reason to think in another paradigm..maybe we are in middle of an important bussines and people pulling the strings for change would not be so interestead in any change.

    Quote Originally Posted by Pooka1 View Post
    I suggest whether or not the level of research is commensurate with the level of research into other medical problems is a question that nobody in this sandbox can answer.
    Without taking in mind previous considerations.. I suppose itís true, at least I have not much information about investments in medical problems.. I saw solutions for other health problems that seems of science fiction.. someone is assigning priorities to different problems and I feel we are close to the end of the tail..I hope I wrong, but anyway.. regardless our particular condition or what we feel or believe, I think we are all in the same boat and we should to claim the best for us!.

  6. #36
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    I am overwhelmed by all these posts but with the knowledge you all have, has anyone ever heard about the studies done in Europe in the 90's with neuro/biofeedback on scoliosis? There had been research on a device that was developed that could be worn constantly that gave input to the body to constantly correct muscle/posture and many studies showed success with this. Yet since there was no "interest from the medical community" so it really never went anywhere. My daughter's psychologist is in the process of contacting the inventor as we are thinking of trying this with her over the course of the next 9 months while we are in the wait mode for possible surgery. These studies were with idiopathic scoliosis.

  7. #37
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    Quote Originally Posted by marykay View Post
    and many studies showed success with this.
    Can you please post them? Or tell me what the method is called and I'll search for it.

    Yet since there was no "interest from the medical community" so it really never went anywhere.
    Okay your claim here is that there was evidence this technique let the patients avoid surgery and surgeons know this evidence exists but the surgeons weren't interested so they could still do AIS fusions? Do I have that right?

    This is the "surgeons are evil" argument. What is the evidence that this is true? The only evidence that will be relevant here is several large, well-designed studies showing this method was universally effective at letting patients avoid (not just delay) surgery. That's why I am asking for the papers. And they have to compare the results to natural history... if they claim to be 90% effective on small curves then that is the same efficacy rate as sitting on the couch eating ice cream.

    Thanks in advance,
    Sharon
    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. #38
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    Quote Originally Posted by flerc View Post
    Sure Iím not the only one, thinking or knowing that really exists people in the world not needing surgery because conservative methods.
    No you are not the only one. Plenty of people think that. But they don't understand what constitutes evidence.

    That is say, if that methods had not been followed, surgery surely was needed.
    Well that's a result to find that folks will not do conservative treatments even to avoid surgery. That might tell you how difficult or annoying the conservative treatments are.

    In our society the help that someone could give to others is a business, so all the professionals of conservative methods says that her method is the best for us, but it not necessary means dishonesty, they only know about what they do and very little or nothing about something else that could be the best in our case. Maybe surgeons are not the exception.
    Surgeons are the only people trained to treat scoliosis. That does NOT mean they only use surgical treatments. I have been very surprised to see how many folks struggle unnecessarily with this fact.

    But what could happen if someone with a real great knowledge about all the principles behind the conservative methods (and not just only joining them as a Frankenstein) recommend according the case, the best that should be followed?
    I hoped that about surgeons .. I knew they donít believe in alternative methods (except braces in some cases), but I hoped they would help me after saying something like as Well, if you want to try with conservative methods.. I donít agree and Iím sure is a waste of time ok? but if anyway thatís what youíll try.. what dreamer I was some years ago.. but I remember that someone here seems had more lucky in this sense..
    But the reason they don't recommend alternative treatments is because there is no evidence they work or even can work in some instances including chiro.

    I make a great distinction between individuals projects of some surgeons and those from medical community. I have not checked it at all yet, but I think that medical community is not making researches about other kind of surgery for scoliosis than vertebral fusion.. it would be a good notice for me to know Iím wrong.
    Staples, tethering, VEPTR, growth rods, Shilla, etc.

    The majority of surgeons could think there is not enough reason to think in another paradigm..maybe we are in middle of an important business and people pulling the strings for change would not be so interested in any change.
    This is the "surgeons are evil" argument.

    regardless our particular condition or what we feel or believe, I think we are all in the same boat and we should to claim the best for us!.
    The only hope lies with the only people trained to handle scoliosis... orthopedic surgeons. The rest are just pretending to help because they don't have any relevant training.
    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."

  9. #39
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    Quote Originally Posted by marykay View Post
    I am overwhelmed by all these posts but with the knowledge you all have, has anyone ever heard about the studies done in Europe in the 90's with neuro/biofeedback on scoliosis? There had been research on a device that was developed that could be worn constantly that gave input to the body to constantly correct muscle/posture and many studies showed success with this. Yet since there was no "interest from the medical community" so it really never went anywhere. My daughter's psychologist is in the process of contacting the inventor as we are thinking of trying this with her over the course of the next 9 months while we are in the wait mode for possible surgery. These studies were with idiopathic scoliosis.
    Yes, I heard about it and as I know and as you said, it seems there was no "interest from the medical community" so it really never went anywhere. Itís not the only one case.
    If I heard something more Iíll tell you.

  10. #40
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    Quote Originally Posted by Pooka1 View Post
    Can you please post them? Or tell me what the method is called and I'll search for it.



    Okay your claim here is that there was evidence this technique let the patients avoid surgery and surgeons know this evidence exists but the surgeons weren't interested so they could still do AIS fusions? Do I have that right?

    This is the "surgeons are evil" argument. What is the evidence that this is true? The only evidence that will be relevant here is several large, well-designed studies showing this method was universally effective at letting patients avoid (not just delay) surgery. That's why I am asking for the papers. And they have to compare the results to natural history... if they claim to be 90% effective on small curves then that is the same efficacy rate as sitting on the couch eating ice cream.
    Iím not saying is really comparable, but sorry I donít have in mind other example, but all people defending the lobotomy in those years could have expose the same arguments.

  11. #41
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    The majority of surgeons could think there is not enough reason to think in another paradigm..maybe we are in middle of an important business and people pulling the strings for change would not be so interested in any change.

    Quote Originally Posted by Pooka1 View Post

    This is the "surgeons are evil" argument.
    Not necessarily.. they really have arguments to think is not a so bad solution because the majority of people may not say that, as you said scoliosis cases are so few, so may be they are not so worry to the outcomes in using a paradigm of exactly one century ago as I know.. and you know that a change of paradigm requires a great effort! regardless what so old may be.. and surgeons are not the only one involved in that business (we live in a business oriented world) and great changes in important business.. and yes, maybe that ‘we are not living in a Wonderful World’ could be another argument.
    Last edited by flerc; 07-11-2011 at 10:58 AM.

  12. #42
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    I make a great distinction between individuals projects of some surgeons and those from medical community. I have not checked it at all yet, but I think that medical community is not making researches about other kind of surgery for scoliosis than vertebral fusion.. it would be a good notice for me to know Iím wrong.
    Quote Originally Posted by Pooka1 View Post
    Staples, tethering, VEPTR, growth rods, Shilla, etc.
    Are those techniques really sponsored by the medical community? How much was the investment? Please copy a link. I know about private projects (as I think they are at least most of them) as the minimal invasive surgery of Filum Terminae that had never received, just a dollar from that community!

  13. #43
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    Quote Originally Posted by flerc View Post
    Are those techniques really sponsored by the medical community?
    Si.
    .
    .
    .
    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. #44
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    regardless our particular condition or what we feel or believe, I think we are all in the same boat and we should to claim the best for us!.
    Quote Originally Posted by Pooka1 View Post
    The only hope lies with the only people trained to handle scoliosis... orthopedic surgeons.
    Well, if itís true that they are the only ones with knowledge and Ďpowerí to pull the strings in this case, then we should to claim to surgeons for a better solution.

  15. #45
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    Lightbulb A collection of articles from National Library of Medicine

    I searched for neurobiofeedback for scoliosis treatment. I found only one article which claimed improvement but no long term follow-up and no other studies showing efficacy. A device was worn. If interested one can try contacting the study's authors:
    http://www.ncbi.nlm.nih.gov/pubmed/20165678

    Other theories about scoliosis, treatments etc. are in the following collection from all over the world--this includes in-born spinal/spinal cord abnormalities:

    http://www.ncbi.nlm.nih.gov/pubmed/3857596

    http://www.ncbi.nlm.nih.gov/pubmed/19878575

    http://www.ncbi.nlm.nih.gov/pubmed/15927058

    http://www.ncbi.nlm.nih.gov/pubmed/15921477

    http://www.ncbi.nlm.nih.gov/pubmed/18588673

    From Switzerland: http://www.ncbi.nlm.nih.gov/pubmed/21221217

    Study on Exercise from Italy: http://www.ncbi.nlm.nih.gov/pubmed/21198407
    MY question always is: What was the Scolioscore on these kids and what were the starting and finishing measurements.

    From Japan: A multistudy review of bracing: http://www.ncbi.nlm.nih.gov/pubmed/21198404
    Last edited by Karen Ocker; 07-11-2011 at 03:59 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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