Page 4 of 17 FirstFirst ... 2345614 ... LastLast
Results 46 to 60 of 241

Thread: Changes in scoliosis treatment due to Scoliscore

  1. #46
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    Quote Originally Posted by hdugger View Post
    The authors suggest that fully 35% of idiopathic cases are not idiopathic at all but due to intraspinal anomalies.
    The 35% is for congenital.

    They found 16% of idiopathic cases had an associated anomaly which they claim is higher than expected. Maybe that is because of a small sample size. Who knows.
    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
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    Quote Originally Posted by flerc View Post
    Im not saying is really comparable, but sorry I dont have in mind other example, but all people defending the lobotomy in those years could have expose the same arguments.
    I am not familiar with the situation with lobotomy but I don't think there could have been evidence it worked towards any goal. Maybe if someone was violent and always hurting themselves and they didn't know how to stop that. I don't know.

    In stark contrast we have surgical fusion which has a proven track record of efficacy. It is the only treatment that does.

    So I don't think you can compare lobotomies with fusions for scoliosis.
    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. #48
    Join Date
    Jun 2011
    Posts
    12
    Sorry took me awhile to get back on here but here are the sites my daughters psychologist cited:
    http://www.ncbi.nlm.nih.gov/pubmed?t...22%5BAuthor%5D


    http://www.ncbi.nlm.nih.gov/pubmed/11411007

    http://www.ncbi.nlm.nih.gov/pubmed/15457761

    http://www.ncbi.nlm.nih.gov/pubmed/7990071

    If you can't get on there let me know. THese studies were back in the 90's. My comment about "physicians weren't interested' comes from the psychologist, John Nash, Edina, MN spoke with one of his colleagues about this and this was in their discussion. He is trying to contact the inventor of one of these devices. I will post more info as I get it and will post how this process goes. Our first appt. is next week. He talks about doing it in conjunction with myotherapy. Anyone ever heard of that helping scoliosis? I spoke with this lady in the cities here that does this Bonnie Prudden method of myotherapy and she says she has had success with scoliosis patients although I don't think anyone was do the degree curvature as my daughter. Not sure if I want to go down that road too yet.

  4. #49
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    Quote Originally Posted by marykay View Post
    Okay these abstracts explain why surgeons were not interested. There is no evidence of efficacy. There is no evidence they beat natural history. Also the last abstract confuses adolescent and juvenile.

    Surgeons are only going to be interested in evidence. They were correct to ignore this work until the researchers pony up any evidence. The world is still waiting.

    My comment about "physicians weren't interested' comes from the psychologist, John Nash, Edina, MN spoke with one of his colleagues about this and this was in their discussion.
    Psychology is not a medical field. They don't deal with evidence like surgeons need to deal with evidence. That explains why they misunderstood why surgeons ignored this treatment. It is due to a lack of evidence.

    He is trying to contact the inventor of one of these devices. I will post more info as I get it and will post how this process goes. Our first appt. is next week. He talks about doing it in conjunction with myotherapy. Anyone ever heard of that helping scoliosis? I spoke with this lady in the cities here that does this Bonnie Prudden method of myotherapy and she says she has had success with scoliosis patients although I don't think anyone was do the degree curvature as my daughter. Not sure if I want to go down that road too yet.
    If this works then it will be the first alternative therapy to do so. There is a reason surgeons don't deal with alternative therapies. Their profession requires them to be evidence-driven. Alternative therapies have no such requirement and never have it seems. That explains why they never pony up evidence of efficacy.

    Good luck with your daughter.
    Last edited by Pooka1; 07-12-2011 at 05:34 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."

  5. #50
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    Quote Originally Posted by flerc View Post
    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. Its not the only one case.
    But why wouldn't surgeons be interested in an effective treatment? (Cue "surgeons are evil" argument)

    Why can't the reason be a VACUUM of evidence of efficacy (as is actually the real reason)?

    Surgeons are NOT required legally or morally or ethically to study things that have less chance of panning out than other things just because parents don't like surgery. It is a VERY GOOD THING that people with no training (and piss poor science skills - half the US population thinks the world is a few thousand years old) aren't steering the research ship. The world could be so construed that surgery is the only option for scoliosis. It could be. It is not like there are benevolent deities watching over these kids. Obviously not.

    We do know something about alternative treatments and that is they have never ponied up evidence. That is good reason for surgeons to put their efforts in things that are more likely to pan out. Time is short.
    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. #51
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Lightbulb What do studies tell us?

    When I took graduate school statistics I remember learning that studies do not "prove" they suggest a conclusion. One study is never enough. It helps if many studies of the same problem, with many numbers of patients, are replicated and get the same result. Long term follow-up is so important with any treatment--especially scoliosis. Studies are usually repeated if a definite conclusion seems possible and funding is available. The patients must be willing to participate.

    There are many reasons why studies are not repeated: No funding, no interest because the treatment not shown to be truly effective, or even the treatment is so onerous no one wants to partake of that study for any length of time. There's also the issue of harm. Valid studies are checked out by the Institutional Review Board to make sure no one is unduly harmed by the study before it even takes place.

    Some studies are halted before completion when harm becomes evident. This happened with the large Nurse Study of HRT. Higher than normal breast cancer was evidenced as well as strokes. That study was stopped in 2002.

    The baffling part of scoliosis has been who would progress life-long, like my mom and myself, and and those whose curves do not progress, no matter what, like most scoliosis patients. If a conservative therapy "helped" a non-progresser then money, time and psychological toll was wasted. The therapy really didn't help because the scoliosis would not have progressed anyway.

    On the other hand if a progressor like myself was identified long before my curve reached 100 degrees and surgical correction obtained, I would have been spared a lot of heartbreak.

    If something has been shown not to really help--then the conclusion needs to be accepted--even though one does not like the conclusion.
    Last edited by Karen Ocker; 07-12-2011 at 04:29 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

  7. #52
    Join Date
    Jun 2011
    Posts
    12
    Well the sad thing is all alternatives should be presented to patients to try if they choose to. Without the patient/parents having to try and find all this out on their own. Just because these studies aren't conclusive yet or prove without a doubt something works doesn't mean the alternatives would not help. There are people out there where alternatives have helped and they avoided surgery. It doesn't matter if it is just one person. If something helps even just one person avoid surgery and they are able to live their life with an alternative therapy, it is worth it. My daughters doctor at Mayo Clinic did say they are research some kind of device that would be more flexible but would allow for growth during the growth spurt years. But it is only being tried on the younger kids. Anyone ever heard of that? Another thing I have been wondering is the consensus that most scoliosis starts with the muscles having some problem (ie it is constantly in spasm) that pulls the spine out of position? That seems to be what my PT/chirop world think. Or perhaps it could be a neurological thing where the correct messages just aren't getting to the muscles to have the muscles return to a normal state. And if it most of the time starts with a muscle/neurological thing, it surely seems like alternatives would have to help. Except in cases like my daughter where she has low muscle tone and has had since birth (which may be the very thing that prevents what I am pursuing from working). Perhaps the research needs to be in the neurological world side too. Perhaps it is and I just don't know that??
    Last edited by marykay; 07-12-2011 at 07:19 PM.

  8. #53
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    Quote Originally Posted by marykay View Post
    Well the sad thing is all alternatives should be presented to patients to try if they choose to. Without the patient/parents having to try and find all this out on their own. Just because these studies aren't conclusive yet or prove without a doubt something works doesn't mean the alternatives would not help.
    I strenuously disagree. Surgeons are trained to be evidence-based. While they can mention there are unproven alternative therapies, they should not to telling patients about specific ones because of the chance the parents will think the treatments are legitimate. There are too many alternative therapies for a surgeon to name in one clinic meeting. Which ones should they mention? Should they pull three randomly out of a hat? None of these treatments have any evidence of efficacy which is why surgeons are not pursuing them.

    If the surgeon doesn't mention a treatment then that is a clue to the rational that they probably are wasting their time pursuing it. The surgeons are the ONLY folks in town with the relevant training to treat scoliosis. If a parent goes too far a field INSTEAD of pursuing medical treatments then they need to worry about child neglect charges.

    There are people out there where alternatives have helped and they avoided surgery. It doesn't matter if it is just one person. If something helps even just one person avoid surgery and they are able to live their life with an alternative therapy, it is worth it.
    Who are these people? Where is the proof that even one person avoided surgery, short or long term, due to an alternative treatment? How do you know there are people out there in this category? Do you just have faith that is so?

    My daughters doctor at Mayo Clinic did say they are research some kind of device that would be more flexible but would allow for growth during the growth spurt years. But it is only being tried on the younger kids. Anyone ever heard of that?
    Maybe he is talking about stapling or growth rods.

    Another thing I have been wondering is the consensus that most scoliosis starts with the muscles having some problem (ie it is constantly in spasm) that pulls the spine out of position? That seems to be what my PT/chirop world think. Or perhaps it could be a neurological thing where the correct messages just aren't getting to the muscles to have the muscles return to a normal state. And if it most of the time starts with a muscle/neurological thing, it surely seems like alternatives would have to help. Except in cases like my daughter where she has low muscle tone and has had since birth (which may be the very thing that prevents what I am pursuing from working). Perhaps the research needs to be in the neurological world side too. Perhaps it is and I just don't know that??
    There are many active mutually exclusive areas of research on AIS etiology. That supports the contention that they really don't have a good lead other than it is genetic. There is a consensus about that.

    You might want to take your daughter to a medical geneticist to see if the low muscle tone, coupled with the scoliosis, might be related to some known syndrome.

    Good luck.
    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. #54
    Join Date
    Jun 2011
    Posts
    12
    Thank you for your comments. I guess we can agree to disagree Pooka. It does make sense from what you both have said that perhaps the surgeon isn't the one to communicate the info. But you only have to look at a lot of comments on this FORUM that people are seeking alternatives and have had some success. I did not imply a person should only go down a road to the point of neglect. People need information to make decisions. It is a good thing this Forum is here to help them out. By the way, I have done the genetic testing twice. The second time around they found a deletion on the 1st chromosome which accounts for much of my daughters issues and probably plays a part in the scoliosis. We have done this neurofeedback for some of her issues and the repeat EEG has shown positive changes. It is slow progress but it is progress. Thus we will try it on her muscles in the back and see what happens. To be continued ..

  10. #55
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    I did not mean to suggest that biofeedback was worthless. This isn't my field so of course I wouldn't know whether it was or was not worthless for any given problem.

    I can well imagine it would help with muscular and perhaps neuro issues. In the limit, everything is brain chemistry and biofeedback seems to access that directly. But because even hard braces fail to hold some curves, it seems highly unlikely that biofeedback could possibly work to hold, not to mention correct, a curve or affect any orthopedic problem in any way, good or bad. What is on the table with scoliosis is bone and biomechanics as far as anyone can tell.

    No testimonial here or elsewhere constitutes evidence of efficacy for any alternative treatment. Even published studies, if they don't have adequate controls or if they have small samples sizes or aren't repeated several times with the same result don't constitute evidence of efficacy of any treatment. The lay testimonials are essentially an uncontrolled study, done once, with a sample size of one where that one has no relevant training. There is no way to establish any curve would continue to progress even if doing no treatment. We have a few folks here with curves in the 50* range who hung there for decades. We also have folks here who were at about 30* at maturity, the magic "protective" limit to avoid progression over the rest of a lifetime nevertheless progress to needing surgery in young adulthood.

    I hope you see now why testimonials are meaningless to establish anything universally applicable. The condition is annoyingly variable which makes it especially hard to study because you need such large study groups to capture the range. And then you need another large control group. Essentially it takes a village of patients to study variable conditions like this. And even then the predictive power is still going to be low. Individual people are not the median. As S.J. Gould said in his beautiful essay on having terminal cancer, the median is not the message...

    http://cancerguide.org/median_not_msg.html

    Very good that you figured out the genetic issue with your daughter. My daughters have some sort of connective tissue issue that might be Marfans syndrome. I don't get them tested because there is a small false negative signal. So even if the test was negative we would still have to do the periodic aortic imaging.
    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."

  11. #56
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    I agree strongly with Karen Ocker that it legitimizes UNPROVEN alternative treatments by having them suggested or even mentioned by a surgeon. People trust their surgeons to give the patient or child their best recommendation. I think if surgeons started mentioning alternative treatments people would feel obligated or compelled to try them, even if the surgeon warned that they were unproven. People will think that if the surgeon mentions it maybe it is really worth a try.

    There's probably one child out there somewhere who ate ice cream every night and their scoliosis stabilized. They might truly believe it was the ice cream that did it. Does that mean surgeons should start suggesting a daily intake of ice cream to every scoliosis patient? As ridiculous as it sounds, it is the same for some of the alternative treatments.

    I think people who are bound and determined to try alternative therapies can find them without trying hard on the internet. Just because (UNPROVEN) non-surgical methods may exist doesn't mean surgeons have an obligation to mention them.

    There has long been sentiment that doctors really could cure cancer and that they are really holding out for some reason. It seems like some feel the same about scoliosis, that it is somehow a nefarious or greedy plot by surgeons to withhold the magical cure. As someone who has worked my entire adult life doing patient care in the medical field, I just don't believe this to be true.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  12. #57
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by hdugger View Post
    My sense is that most surgeons strongly believe that nothing but bracing and surgery work to hold or reduce curves. That would make it unethical for them to recommend anything else.

    That doesn't mean that other things don't work - surgeons were pretty sure that back surgery was the only really effective thing for non-scoliosis back pain, and research proved them wrong. But, non-surgical treatments aren't their area of expertiese - what they know is surgery and, because they oversee its use - bracing.
    Of course! Imagine that, even you are so close to the limit that could be reached in that way, you continues insisting and insisting since a half century ago that ONLY hardware engineers may improve the so low performance of your Information system. May you blame them if instead of saying youwell, we may replace your assembler programs by others using object oriented languages, they only say you.. well we may get more disk space and install another server? .. you may only blame them if they are only interested in continuing using thermionic valve paradigm from middle XX century..

  13. #58
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by Pooka1 View Post
    But why wouldn't surgeons be interested in an effective treatment? (Cue "surgeons are evil" argument)
    Does this ‘evil surgeons’ argument means that all surgeons would will continues interested in doing what they know to do and receiving a pay for that, if just snapping their fingers they could do that other professionals (not them) give to that people something really better? I’m sure that many surgeons will not snap their fingers as surely many politicians would continue allowing unfair situations hurting so many people in strange situations involving economic interests and some lawyers will continues defending people they know are criminals.. we not live in a Wonderful World of course.

    But in this case, even is absolutely clear the economic interests may have surgeons when they say that is impossible that something different to what they do may help (avoid the need of what they do) and of course they cannot be sure about that, I think that many surgeons would snap her fingers anyway.. but of course is not something so simple like that. What could do a ‘good surgeon’ assuming that there is no reason to be sure that non surgical solution could not be better for her patients? To go against his colleagues? Doing what? People not interested in risking their job or even more because trying in helping others are evil people? May be, I don’t know. I only know as I said before, that individual people are not the same as organizations, which may shows unclear behaviors as in this case.
    Last edited by flerc; 07-13-2011 at 11:16 AM.

  14. #59
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by Pooka1 View Post
    Why can't the reason be a VACUUM of evidence of efficacy (as is actually the real reason)?
    It is a VERY GOOD THING that people with no training (and piss poor science skills - half the US population thinks the world is a few thousand years old) aren't steering the research ship.
    We do know something about alternative treatments and that is they have never ponied up evidence.
    There are 2 contradictory assumptions here: 1) Surgeons are the only guys with knowledge about scoliosis, other professionals has not idea 2) As surgeons have never seen evidence, they are sure that non surgical treatments could not work.
    As the only one evidence that they could see, became from ignorants, because surgeons never tried anything, NASA Scientists could have said that is impossible to go to the moon because they never saw any evidence.. only failed attempts of students of some school.

    Quote Originally Posted by Pooka1 View Post
    Surgeons are NOT required legally or morally or ethically to study things that have less chance of panning out than other things just because parents don't like surgery.
    Not only parents. I knew someone that now is close to 65 years old and fine despite her (mainly lumbar) curve over 80, and of course what they parents could thought about surgery is not what is making her to not like it. Its not the only adult case I know.
    Quote Originally Posted by Pooka1 View Post

    It is not like there are benevolent deities watching over these kids. Obviously not.
    Non deities, nor so worry organizations..
    Of course if affects kids, should to increase the priority to the solution of that problem.. but is not what seems to be happening.

  15. #60
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,173
    OKay Fer, I think I see the problem.

    Linda will correct me if I'm wrong but I don't think most surgeons are doing research on non-fusion treatments (this includes non-fusion surgical and non-surgical). Only some seem to be doing any research at all.

    And the reason I don't think they are doing research on new treatments is because that is not what they were hired to do in most cases. I do NOT think most surgical positions, even at teaching hospitals, are even in part research positions. I think they are clinical positions. They are serving the community. I could be wrong.

    But some do research and publish, some EXTENSIVELY. Lenke must have over 1,000 publications including coauthorship. Unless there is a complete overlap between the clinical cases and the published research which is often the case, they must be "buying out" some of their clinical time with research grants. It seems like it would be very hard to do research "on the side" if you were hired to do just clinical. The time required to write research proposal, administer grants, collect data, and write up the results would cut too far into the clinical time in my opinion.

    I am guessing the types of research these guys do falls into one of a few categories:

    1. straight crunching of clinical data
    2. publishing trials of new surgical approaches
    3. publishing trials of conservative approaches (bracing and PT)

    It seems the bulk of the pubs I have seen fall into #1. Less fall into #2. Only a literal handful of surgeons are working on studies in #3 although some PhDs are working in this category, notably Dr. McIntire.

    The reason category #3 is largely limited to bracing and PT is because there is some scant evidence for those things and because they are not non-scientific. Alternative treatments tend to be non-scientific like raindrop therapy, little hand-held massager thingies, vibrating chairs, etc. etc. These things are not expected to be effective so it would be HIGHLY unethical for a surgeon to study them.

    I think the issue that parents have here is they wish all or most of the research would be in category #3 which at this point is mostly on speculation. In the mean time, the most needy folks, those who need surgery, are marginalized. Surgeons won't do that nor is it ethical and would constitute a breach of their Hippocratic oath.
    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."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •