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Thread: Rehabilitation of adolescent patients with scoliosis—what do we know?

  1. #196
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    Quote Originally Posted by Pooka1 View Post
    Yes and these results could be fairly interpreted as meaing the braced kids were treated unecessarily. It looks like most if not all were. A previous study estimated ~70% were braced who didn't need to be. That is really sad. At some point, they have to identify the majority(?) of kids who do not need bracing for ethical reasons.



    Mine too!

    This is a potentially valuable report on the mid-years years. I hope they follow everyone into the out years.

    The two sentences I bolded seem important and should have been directly related to the other conclusions and not just stated.

    A major problem I see here is using the metric of having surgery. We know very well that some people in surgical range refuse it. This paper would be much stronger if they reported the number of people who reach 50* in each group rather than the sugical rates. The groups might be small enough such that the vagaries of which people will agree to surgery may have affected the results.
    Hi...

    I think it's probable that the sentences you called out were directly related to other conclusions in the full paper.

    If you want me to pull the full text on any of these and email it to you, just let me know.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  2. #197
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    Quote Originally Posted by skevimc View Post

    • In light of the unknown long-term effects of surgery, a randomised controlled trial (RCT) seems necessary.


    I was referring to the above quote. Saying "In light of the unknown long-term effects" implies to me that no data exists.

    After reading the other info I think I can understand the point he is trying to make. He's saying that crossing out conservative studies because they lack controlled trials against the natural history of the curve is an unfair critique because there are no trials comparing the natural history to surgery either??
    In reading the literature historically, the comment is a result of the suggestion that RTC studies be used in bracing treatments towards support of evidence based medicine relative to patient choice of treatment. Weiss retorts/suggests that if this measure is to be applied to bracing, then the same should be applied to surgical methods - as without it much remains unknown regarding patient benefits/risks.

    He continues the discussion with outlining why RTC is not suitable for either, as a pharmaceutical model is unrealistic for complex disorders like scoliosis and that a better format is that of prospective controlled studies. He did state in November 2007 (SOSORT Editorial): While there is evidence in the form of prospective controlled studies that Scoliosis Intensive Rehabilitation (SIR) and braces can alter the natural history of the condition, there is no prospective controlled study comparing the natural history with surgical treatment.

    From my perspective (admittedly lay) it seems that he is not so much talking about comparative studies (in the literature) as he is talking about the data used in them - in that the data collected is limited in scope and needs to be broader in order to achieve objective and valid scientific evidence of measurable medical benefit/risks, relative to some serious scientific methods of data collection (excluding RCT which appears not relevant to scoliosis for reasons previously stated) - and that the best way to do that is through prospective controlled studies and better data collection, such as Harrington envisioned, and far beyond what is now being done. Hopefully this will happen in the future, and a database more in keeping with Harrington's original vision will become a reality, encompassing a wider variety of topics, to include: long term evidence for surgical treatment on a higher level, addressing post surgical problems in an attempt to improve patient safety vs patient survey information (on a voluntary basis). In my opinion a similar database for conservative methods would also be desirable. So, I read the comment to state that until such time as reporting is more in-depth, that many things remain unknown (in the literature).

    It was an eye-opener (for me) to learn from this debate paper, that the levels of evidence for treatment can be shown (through the literature) to be: Level C for surgery, B for bracing, and A for physical therapy!

    This led me to read one of his references:

    Approach to scoliosis changed due to causes other than evidence: patients call for conservative (rehabilitation) experts to join in team orthopedic surgeons.Disabil Rehabil. 2008;30(10):731-41.Negrini S.
    CONCLUSIONS: Our results seem to confirm the initial hypothesis: The interest of the AIS treatment community (composed almost exclusively by orthopedic surgeons) has shifted toward fusion whereas research has increased, while conservative treatment is suffering a decrease in professional interest (and diminished research). AIS requires expert, committed evidence-based care, but other specialists totally devoted to conservative treatment, particularly (but not exclusively) Physical and Rehabilitation Medicine specialists, should enter the field to create better treating teams.
    Thinking beyond the editorial, debate paper, and other things, I think the future looks more promising in that the data base Harrington envisioned could be expanded to include all forms of treatment, both surgical and conservative. Certainly the technology did not exist in Harrington's time to actually implement it. The technology does exist now. All that is lacking is coordinated scientific efforts spanning all treatment modalities and medical professions.

    In the end - not a tool for proving which treatment is best - but rather, which treatment is best for which patient .. with more known, than unknown in terms of measurable medical benefits and risks. I suspect this is the vision of SOSORT.

    A well organized patient/parent coalition would probably help as well - hey, worked for Lorenzo's Oil ... I definitely suggest yourself, Dingo and Ballet Mom on the task force ;-)


  3. #198
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    Lightbulb Long term studies/people live longer now

    The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.

    If a curve is 70deg at age 50 and progresses only one degree a year to age 70 that, otherwise healthy 70 year old, would have a 90 deg curve and feel terrible.

    I have a friend whose, otherwise healthy, 81 year old mom, is in constant pain from scoliosis. Her surgeon said she could have avoided this with surgery in her 70s. The woman has tried every treatment and intervention available. She needs morphine!

    That being said. Would anyone think the Spinecore brace would give her some relief--at least??? She tried other braces.

    This was the primary reason I had surgery at 60. I was otherwise healthy and did not want to spend my old age in pain and deformity--and be a burden to my family.

    Scoliosis surgery has been done since the 1950's--me for example and I was well, for over 45years, before a revision.
    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

  4. #199
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    Quote Originally Posted by Karen Ocker View Post
    The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.
    I *think* the increase in life length seen recently has to do with infant mortality. I don't think there's been that much change in the life expectancy of adults.

  5. #200
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    Karen -

    I am sincerely happy for your success Karen - may it be continued, always.

    I don't know if Spinecor bracing could help the mom of your friend. It is possible, but I certainly cannot say - that would be a matter for her to consider with her family and medical team.

    I think there was an older study which indicated that scoliosis, in general, could lead to early mortality - and think there is a newer one that refutes that.

    In any case, I have seen 90 year olds (non surgical cases) with more energy and zest for life than myself at 60 ... and I've also seen how the condition can ravage someone at the age of 70 - so, each case is different (both surgical and non surgical alike).

    My choice at the moment is non surgical therapy (while keeping an eye on surgical options - since there is no way to predict with any certainty what the unknown future may hold for me personally). I do think that the future looks brighter in terms of rehabilitation with SSTR which appears perfect for hospital affiliated PT departments (for both non-surgical and surgical patients, in some cases where pain remains an unresolved issue). Other therapies appear promising as well. The more modern methods of bracing also appear very promising for both adolescents and adults. When surgery is necessary, as it was in your case, I will be the first to say we are fortunate to have the methods that exist, as stories like yours well attest to this. Should I ever require surgery - I would hope for success without revision. Given my current age, that may be possible if I matched your success! Yours truly is an inspiring story.

  6. #201
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    Life expectancy/scoliosis/long term studies

    Quote Originally Posted by hdugger View Post
    I *think* the increase in life length seen recently has to do with infant mortality. I don't think there's been that much change in the life expectancy of adults.
    Infant mortality is a totally different statistic. That refers to infants who die as babies. They never get a chance. Babies do have a "life expectancy" but so does everyone else along the age spectrum.

    This has greatly increased in the last 20-30 years due to advances in medicine. As persons age, as new therapies develop to help them, the life expectancy they originally had as babies does indeed change. Just ask any insurance agent.

    When I was a teen very few people lived past 70. That is why Social Security was pegged to 65. No expected our current elderly to live so long!!!

    Regarding long term studies:
    When I had my first surgery in 1956 follow up was one year. Very few people had medical insurance. There were plans which covered portions. My parents
    paid huge amounts for my surgery/casts/x-rays/doctors visits. I found the bills after my mom died in January. No wonder she couldn't sleep at night.

    That being the case with many people, very few scoliosis patients would enter a study, if there was one, because they would have to pay for every visit/x-ray. It would be too much to ask.
    Retrospective studies, that far back, are impossible in this situation because no data was collected.
    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. #202
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    Quote Originally Posted by Karen Ocker View Post
    Infant mortality is a totally different statistic. That refers to infants who die as babies. They never get a chance. Babies do have a "life expectancy" but so does everyone else along the age spectrum.

    This has greatly increased in the last 20-30 years due to advances in medicine. As persons age, as new therapies develop to help them, the life expectancy they originally had as babies does indeed change. Just ask any insurance agent.

    When I was a teen very few people lived past 70. That is why Social Security was pegged to 65. No expected our current elderly to live so long!!!
    Sorry, I meant that the dramatic increase in overall life expectancy has to do with decreasing the infant mortality rate. So, an infant at birth in 1920 had an overall life expectancy of 56, while now they have an overall life expectancy of 75. But, once you start measuring adults, the life expectancy has increased much less dramatically over the last 100 years. A 20 year old today has only a 10 year increase in life expectancy over a 20 year old in 1920, and a 60 year old today only has a 4 year increase in life expectancy over a 60 year old in 1920. In the last 30 years, it's changed much less dramatically - a four year increase for 20 year olds and a three year increase for 60 year olds.

    All of this is just to say that we should actually have a pretty big pool of old people with scoliosis for long-term studies.
    Last edited by hdugger; 08-20-2010 at 11:57 AM.

  8. #203
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    Quote Originally Posted by mamamax View Post
    In reading the literature historically, the comment is a result of the suggestion that RTC studies be used in bracing treatments towards support of evidence based medicine relative to patient choice of treatment. Weiss retorts/suggests that if this measure is to be applied to bracing, then the same should be applied to surgical methods - as without it much remains unknown regarding patient benefits/risks.

    He continues the discussion with outlining why RTC is not suitable for either, as a pharmaceutical model is unrealistic for complex disorders like scoliosis and that a better format is that of prospective controlled studies. He did state in November 2007 (SOSORT Editorial): While there is evidence in the form of prospective controlled studies that Scoliosis Intensive Rehabilitation (SIR) and braces can alter the natural history of the condition, there is no prospective controlled study comparing the natural history with surgical treatment.

    From my perspective (admittedly lay) it seems that he is not so much talking about comparative studies (in the literature) as he is talking about the data used in them - in that the data collected is limited in scope and needs to be broader in order to achieve objective and valid scientific evidence of measurable medical benefit/risks, relative to some serious scientific methods of data collection (excluding RCT which appears not relevant to scoliosis for reasons previously stated) - and that the best way to do that is through prospective controlled studies and better data collection, such as Harrington envisioned, and far beyond what is now being done. Hopefully this will happen in the future, and a database more in keeping with Harrington's original vision will become a reality, encompassing a wider variety of topics, to include: long term evidence for surgical treatment on a higher level, addressing post surgical problems in an attempt to improve patient safety vs patient survey information (on a voluntary basis). In my opinion a similar database for conservative methods would also be desirable. So, I read the comment to state that until such time as reporting is more in-depth, that many things remain unknown (in the literature).

    It was an eye-opener (for me) to learn from this debate paper, that the levels of evidence for treatment can be shown (through the literature) to be: Level C for surgery, B for bracing, and A for physical therapy!

    This led me to read one of his references:

    Approach to scoliosis changed due to causes other than evidence: patients call for conservative (rehabilitation) experts to join in team orthopedic surgeons.Disabil Rehabil. 2008;30(10):731-41.Negrini S.
    CONCLUSIONS: Our results seem to confirm the initial hypothesis: The interest of the AIS treatment community (composed almost exclusively by orthopedic surgeons) has shifted toward fusion whereas research has increased, while conservative treatment is suffering a decrease in professional interest (and diminished research). AIS requires expert, committed evidence-based care, but other specialists totally devoted to conservative treatment, particularly (but not exclusively) Physical and Rehabilitation Medicine specialists, should enter the field to create better treating teams.
    Thinking beyond the editorial, debate paper, and other things, I think the future looks more promising in that the data base Harrington envisioned could be expanded to include all forms of treatment, both surgical and conservative. Certainly the technology did not exist in Harrington's time to actually implement it. The technology does exist now. All that is lacking is coordinated scientific efforts spanning all treatment modalities and medical professions.

    In the end - not a tool for proving which treatment is best - but rather, which treatment is best for which patient .. with more known, than unknown in terms of measurable medical benefits and risks. I suspect this is the vision of SOSORT.

    A well organized patient/parent coalition would probably help as well - hey, worked for Lorenzo's Oil ... I definitely suggest yourself, Dingo and Ballet Mom on the task force ;-)

    The goal of the database is something I've thought of for a while as well. I didn't realize that it had tried to be set-up. I think this should be standard for every chronic disease or condition. National or international collaboration of treatments and short-term and long-term follow-ups would tremendously improve and progress the medical field. The principal organization should establish a standard set of reportable criteria. De-identify all data. And input whatever comments or variables concerning treatments. Patient comes in. Sees doctor. Describes treatment. Data gets posted. Next patient living 14 states away gets diagnosed and searches the database for patient data matching their criteria. Treatment options, long term follow-ups. Prognosis. Patient education. Etc...

    There are so many possibilities with this. Certainly, money is an issue. But there are lots of open source, internet based solutions available. It could be accomplished. I imagine it will be but that might be 10+ years from now.

  9. #204
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    Quote Originally Posted by Karen Ocker View Post
    The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.

    If a curve is 70deg at age 50 and progresses only one degree a year to age 70 that, otherwise healthy 70 year old, would have a 90 deg curve and feel terrible.
    Yes and this is what is meant by the "out" years. There is no obvious data on this but from the 10 to 1 ration of adult to adolescent fusion, I think we might tentativley conlcude many of the sub-surgical cases at maturity and even young adult or middle age end up surgical in the out years. For kids who wore braces, that is a real kick in the teeth as it is for all the folks told they can relax about it and stop worrying.
    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. #205
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    Quote Originally Posted by Pooka1 View Post
    Yes and this is what is meant by the "out" years. There is no obvious data on this but from the 10 to 1 ration of adult to adolescent fusion, I think we might tentativley conlcude many of the sub-surgical cases at maturity and even young adult or middle age end up surgical in the out years. For kids who wore braces, that is a real kick in the teeth as it is for all the folks told they can relax about it and stop worrying.
    As the parent of an ubraced (and, apparently, unbraceable) kid, we would have gladly gone through bracing if it had kept his curve under 40 degrees until he hit his 30s or 40s.

    People beyond that age tend to have back problems, even if they don't have scoliosis (mine started at 40, and my back is pretty straight). It's the having back problems as a young person that I wish we could have avoided for him.

  11. #206
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    Quote Originally Posted by hdugger View Post
    As the parent of an unbraced (and, apparently, unbraceable) kid, we would have gladly gone through bracing if it had kept his curve under 40 degrees until he hit his 30s or 40s.
    Have you asked your son if he would have gone through 23 hour/day bracing through the many teen years for a very uncertain chance of avoiding surgery as an adolescent and for the truly uncertain, if not unlikely chance of avoiding surgery at any point?

    I have asked my one braced daughter this on a few occasions. She wore a night-time brace and has given me two answers thus far... the first was when she learned she needed surgery, she thought it was worth it. She did not regret trying the brace at all. That is not the case with a 23 hour a day brace which she informs me she would not have worn FULL STOP. I question how many kids would wear a 23 hour/day brace if they understood the state of the literature. I bet the answer is close to none.

    The second, more recently answer she has given is lamenting not cutting to the chase and getting the surgery sooner. She started making these noises as she saw the results of her twin's surgery early out. While she says this now, I bet she would still say the brace was worth a try although she has also said she would not want to stay at the sub surgical angle (when she was there and wearing the brace) and not get the excellent correction her sister got if given the choice to avoid surgery.

    People beyond that age tend to have back problems, even if they don't have scoliosis (mine started at 40, and my back is pretty straight). It's the having back problems as a young person that I wish we could have avoided for him.
    That's true. Some 85% of folks with normal backs will have back pain bad enough to seek treatment I think is the statistic. For example I have a lumbar issue which I think is a sports injury. And 100% of normal folks will develop DDD if they live long enough. The issue, as far as I can tell, is if folks with even sub-surgical curves though still in the nominal treatment window encounter these things with greater frequency and earlier in life.

    I am trying to understand the state of the art w.r.t. average progression rate. As I first understood our surgeon, he seemed to be saying if my daughter could stay below 50* at maturity, she would avoid fusion for life. I thought he meant that people below 50* at maturity simply don't progress ever. What I have come to learn from when I asked him to clarify is that folks still progress but usually at such a slow rate that they are not likely to need fusion in a normal lifespan.

    But I don't think that is accurate after reading the testimonials. What I think we hear is 1* - 2* per year for the average (WIDE variation) sub surgical case that is in the conservative treatment window (~25* - 50*) at maturity. But let's say a kid is at 35* at 15 y.o. and progresses 1* a year. That means they are surgical at age 30 on average. If they are 25* at 15 years old then they are surgical at 40 years old. And assuming a slower progression, it seems that many folks will be surgical by their golden years.

    As far as I can tell, all but the smallest curves that are below the conservative treatment range will reach surgical range well within a normal lifespan. And the 10 to 1 adult to adolescent fusion rate is consistent with that. What am I missing?
    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."

  12. #207
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    Quote Originally Posted by Pooka1 View Post
    Some 85% of folks with normal backs will have back pain bad enough to seek treatment I think is the statistic. For example I have a lumbar issue which I think is a sports injury. And 100% of normal folks will develop DDD if they live long enough.
    You raise a good point, Sharon. My husband (who does not have scoliosis) has been seeing doctors, on and off, for nearly a decade for his back. He has some herniated/bulging discs that cause him pain - some days worse than others - mostly in his lower back.

    One doctor even told him that if you put 100 people over a certain age (40 maybe, I can't recall) in an MRI tube, most would have some abnormality or issue with discs or otherwise that would cause them pain.

    I also read that back pain is one of the top reasons why employees miss work.

    This is not to say that scoliosis cannot cause pain later in life, but it seems that a large portion of the general population (much larger than the percentage who have scoliosis) will have an issue with back pain at some point in their lives.
    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/

  13. #208
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    Quote Originally Posted by Pooka1 View Post
    Have you asked your son if he would have gone through 23 hour/day bracing through the many teen years for a very uncertain chance of avoiding surgery as an adolescent and for the truly uncertain, if not unlikely chance of avoiding surgery at any point?
    We asked about getting braced when our dr. didn't suggest it, so, yes, he was willing. I have no way of reading it past that.

    My statement was to correct the idea that delaying surgery is a pointless goal. Being straighter and unfused *now*, as a young adult, is a million times more important to him (and me) then it would/will be later on. So, no, delaying the surgery by 10 or 20 years isn't a kick in the teeth. It's not the ideal outcome, but it certainly has great value.

  14. #209
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    Quote Originally Posted by hdugger View Post
    My statement was to correct the idea that delaying surgery is a pointless goal. Being straighter and unfused *now*, as a young adult, is a million times more important to him (and me) then it would/will be later on. So, no, delaying the surgery by 10 or 20 years isn't a kick in the teeth. It's not the ideal outcome, but it certainly has great value.
    Okay I see that. My one daughter wanted the cosmetic result now after seeing her sister. And her curve was barely noticeable to me at least. But it was obvious to her. For all I know she stopped wearing the brace at least partly because she was afraid it might stop the curve because we had several discussions about how she will not get the surgery if she is not in range and she will forever have a 40*-ish curve.

    Since her surgery, and maybe owing in part to her incredibly fast recovery at least w.r.t. her sister, she has spontaneously remarked that she looks and feels normal, would have gotten the surgery sooner in hindsight if she could have done so, and that it was a big win for her.

    But she's just a kid.
    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."

  15. #210
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    Quote Originally Posted by Pooka1 View Post
    Since her surgery, and maybe owing in part to her incredibly fast recovery at least w.r.t. her sister, she has spontaneously remarked that she looks and feels normal, would have gotten the surgery sooner in hindsight if she could have done so, and that it was a big win for her.
    My sons runs some increased risk of coming out of surgery with a worse cosmetic effect and more discomfort, due to his risk factors for PJK. So, surgery is no panacea for us.

    Bracing, if he had the kind of curve which would have allowed it, would have been the preferred treatment. Without that, doing nothing is the preferred treatment, until we can't avoid surgery.

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