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

  1. #211
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    Quote Originally Posted by Pooka1 View Post
    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.
    Where did you get this ratio from? Are you quoting something? Are you including adult fusions for degenerative disc disease, spinal stenosis, "instability", fractures, degenerative scoliosis in adults from osteoarthritis and/or osteoporosis? Are you including revision surgeries due to earlier fusion surgeries for adolescent scoliosis?

    For you to tentatively conclude that many of the sub-surgical cases at maturity end up surgical in the out years sure better have some data to back that claim up. Otherwise it is completely misleading and doesn't coincide with what most orthopedists state or the studies show.

  2. #212
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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.
    I agree completely hdugger.

  3. #213
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    Very scary for parents

    The year was Spring1956. I was 12 and really suffering psychologically from scoliosis. We had lost 2 grandparents withing 30 days, the roof caved in from a heavy snow fall at the summer cottage, my spine was drastically curving and Dr. Cobb(my surgeon of Cobb angle fame) recommended immediate treatment(Plaster cast with daily turnbuckle stretching to balance the curves, fusion and spending the rest of the year in bed, not walking to at least get some correction/stabilization of my triple curves. (Hospital for Special Surgery).
    My mom wanted to wait to give me a "summer". Over those 3 months I was miserable and really regret an earlier intervention. I developed a pain I never had before and certainly could not join my peers in fun. Had sooo much pain By then my rib hump had become pointed and that did not ever come out with curve reduction. Later helped some at age 60 with my revision.
    This scoliosis/decision has impacted the rest of my life:

    Stomach problems(stomach was laying on its side for years-acid rolled up and scarred my esophagus).
    Reduced lung capacity to half normal/loss of lung tissue from the chest deformity.
    Urged to have (8yrs)hormone replacement therapy, against my wishes, to "help prevent osteoporosis of my spine" ended up with bilateral breast cancer.
    Needed gallbladder out(I have NO risk factors for gallstones). Because I needed the special feeding between the 2 surgeries, the gallbladder "rests" and forms stones rapidly. A year and a half later had gallbladder pancreatitis.(I do not drink at all).
    These are not opinions but actually resulted from having scoliosis.
    The revision mitigated some of the stomach problems. I have had over 8 surgeries in the last 8 years.

    Just retired.
    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. #214
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    Every Case is Different ...

    Every case is different. Here I am at 61 (in the fall) with absolutely no conditions that require operations or medication ... with the exception of my scoliosis which does cause a deformity (attached) and episodic need of pain medication.

    I think it pretty clear that each case is different - some requiring surgical intervention, and others which could respond to non surgical rehabilitation and that there is no one size fits all.

  5. #215
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    Wow, Karen....you really are a pioneer!

    I think most parents, I know I would, would have opted for spinal fusion surgery for any child with a 100 degree curve at the age of 14. I think the decision would be quite easy even with surgical risks.

    But I'm not the one trying to scare parents.

    Quote Originally Posted by Pooka1 View Post
    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?
    Linda just provided Pooka with a study, that Pooka has seen multiple times before that shows that kids in that 30+ years old range did NOT progress beyond their original diagnosis...and yet she still continues to try to scare parents with her unfounded prognostications of future catastrophe and distress should they not get their kids immediate surgery, or if they brace them to stop the progression.

    Exactly who is trying to scare people?

    Hdugger's son may never progress....in ten or twenty years they could have invented and tested flexible motion scoliosis implants...they could have invented stem-cell cures for nerve damage caused by surgery...they could have figured out how to deal with the proximal junctional kyphosis (PJK) that is occurring more frequently nowadays due to the stiffer implant systems in use, especially for kids with high-risk potential. There are all sorts of things that waiting could be beneficial for. His son's not in pain, he's getting help through massage and exercise treatments which have reduced the cosmetic concerns. As everyone knows here, scoliosis is not an emergency condition in most cases. So what's the problem with his waiting, as long as he remains in fairly decent health so that surgery in the future is still an option?

    I don't get the constant fearmongering that is being directed at those patients not choosing immediate surgery or who choose to brace to potentially avoid surgery. What is the reason for that? I would really like to know...and I would think others would want an explanation also.
    Last edited by Ballet Mom; 08-22-2010 at 12:13 PM.

  6. #216
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    Quote Originally Posted by mamamax View Post
    Every case is different. Here I am at 61 (in the fall) with absolutely no conditions that require operations or medication ... with the exception of my scoliosis which does cause a deformity (attached) and episodic need of pain medication.

    I think it pretty clear that each case is different - some requiring surgical intervention, and others which could respond to non surgical rehabilitation and that there is no one size fits all.
    Mamamax! Your picture of your back is amazing! No wonder you don't want surgery, I wouldn't either. There is hardly any deformity noticeable. My daughter looked more deformed at 35 degrees (at least through the shoulders...she doesn't have a lumbar curve)!

    What were the size of your curve(s)? Or do you only have a lumbar curve? Amazing!
    Last edited by Ballet Mom; 08-22-2010 at 11:44 AM.

  7. #217
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    I would guess that 1) if we'd had a scoliosis specialist for our first few visits and 2) if we'd had any idea how much more he would curve after 16, my son's doctor would have strongly recommended that he be operated on after his second visit at age 17 when his curve was 47 degrees and still going.

    But, since we didn't do that, he's stabilized at a workable curve (although he's not crazy about the hump/kyphosis/or whatever it is under his right shoulderblade) and with no pain or obvious physical limitation.

    My assumption is that he'll end up being operated on eventually, barring some miracle discovery. I've just seen too many single thoracic curves in young people go on to become painful double curves in older adults to think that he'll be able to avoid the operating table forever.

    But, given his risk of PJK, I'm glad we're pushing that potential surgery out further. Of course, if his curve starts increasing, or he starts developing another curve, or he starts feeling pain, we'll rethink our plans.

  8. #218
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    Quote Originally Posted by hdugger View Post
    But, since we didn't do that, he's stabilized at a workable curve
    Yes your son's stability at/near the surgical range is at least the third or fourth testimonial like that in this little sandbox. I guess that's why surgeons require proof of progression and not just having one radiograph in range. Note to the folks at Clear not that reality necessarily matters for them.
    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. #219
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    Quote Originally Posted by hdugger View Post
    My assumption is that he'll end up being operated on eventually, barring some miracle discovery. I've just seen too many single thoracic curves in young people go on to become painful double curves in older adults to think that he'll be able to avoid the operating table forever.

    But, given his risk of PJK, I'm glad we're pushing that potential surgery out further. Of course, if his curve starts increasing, or he starts developing another curve, or he starts feeling pain, we'll rethink our plans.
    As people with financial backgrounds know...options have value. There is much value in your ability to change your plans whenever you need or want to. And you never know...maybe someone might research the retinoids and find out scoliosis is caused by a latent infection in the spinal cord and solve the problem of progession or they may find something else that works....you just simply cannot know at this point. And so there is value in waiting...until you decide you don't want to wait anymore.

  10. #220
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    Quote Originally Posted by Ballet Mom View Post
    Mamamax! Your picture of your back is amazing! No wonder you don't want surgery, I wouldn't either. There is hardly any deformity noticeable. My daughter looked more deformed at 35 degrees (at least through the shoulders...she doesn't have a lumbar curve)!

    What were the size of your curve(s)? Or do you only have a lumbar curve? Amazing!
    Thanks Ballet Mom :-) I have to say however, there are times when I feel quite deformed. Over the years, when I've had occasion to visit with new medical doctors, they have also been a bit surprised when seeing xrays following visual exams.

    42 degrees Right Thoracic, 57 degrees Left thoracolumbar - Rotation 26 degrees. Immediate InBrace xray: 29 degrees thoracic/51 degrees thoracolumbar- Rotation 21 degrees. Bracing has resulted in small cobb angle improvement and improvement as well in balance, posture, and pain. I have noted small cosmetic improvement. The diminished pain of most value to me.

    From the Schroth Point of view, I am a typical 4 curve left thoracolumbar (the marks on the image are relative to different Schroth breathing techniques and support required during exercise or when at rest, lying on my back.

    Had it not been for the non surgical rehabilitation that I was able to receive, during a spell of great pain, I would have sought out surgery for relief. In fact I did consult with an SRS surgeon regarding that just prior to giving bracing a shot. Having come through that period, has given me cause to seek out other rehab methods and from what I am learning, SSTR may be able to provide me with even more benefit in the years ahead.

    I hope to meet with a local PT department soon and explore the possibility of bringing SSTR to our area, not only for myself but for many others as well.

    If I had relied solely and only upon the literature, or the standard medical recommendations - I would have, I'm sure, been to "scared" to try an alternative. Luckily, I do not scare too easy when it comes to this. Certainly there are cases that require surgery, without discussion - and then there are other cases like mine which will respond to other treatments. Like you say, much may be discovered in the near future. I am grateful to have been fortunate enough to be able to wait, and try rehabilitation until such time that surgery may be a safer option without future revision (should it be required in my case).

  11. #221
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    Have you been progressing much over your adult years mamamax? Or have you managed to stay stable over time?

    Hope you don't mind my asking...you obviously don't have to answer if you don't want to.

  12. #222
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    Very definitely there has been progression over the years aged 11 to 60. I would say that for me, the progression has been slow with periods of intense pain perhaps corresponding to muscular breaking points, or in other words at such point that the muscles are screaming out – enough already! Those are the times I have been driven to consult with doctors and surgeons. In between such times I have been asymptomatic for the most part. Looking back, breaking points surface approximately every ten years. Surgery has been recommended more than once - having declined, physical therapy the next recommended option. Chiropractic adjustments having done more good than exercise not designed for my specific curvature pattern. It is only in the last 10 years or so that I've needed to keep prescription pain medication on hand for use as needed.

    Given the significant (to me) success with bracing, it seems to me that other rehabilitation methods would be worth my time and effort to pursue. So the facts are, there is a natural history of progression. Can it be stopped, or reversed?

    The curves are structural by surgical standards (bending xrays & Adams test) and yet, doing a certain Schroth exercise near straightens my spine. Schroth being a physical therapy designed for specific curvature patterns. But schroth isn't just about mechanical exercise - it also involves unique breathing patterns while exercising. The one that I learned results in a feeling of side shift to the right with a lowering of the right hip on inhale and movement against convexities on exhale which results in a lengthening of the spine and better alignment.

    As I understand it, for adults, SSTR would incorporate exercise with movement adjustments in daily activities in order to reinforce new learning patterns opposite of what exists as a result of the condition. Bracing is also used for adolescents and sometimes for adults when pain is a main issue.

    For example, with a left thoracolumbar curve, my tendency, at rest, is to lounge on (or lean into) my left side, and I sleep on my left as well. I recently learned that Schroth would recommend lounging to the right and also sleeping on the right (same side as the raised hip). While it wasn't comfortable to do at first, I have started sleeping on my right side and after a week of this can see and feel benefit from it. So if anyone asks me if I think that adult rehabilitation is worth pursuing - I'd say yes, given that it is specific to curvature pattern and daily activities, and I'd even say that bracing is not just of benefit to the young, from my experience :-)
    Last edited by mamamax; 08-27-2010 at 05:43 AM. Reason: typo

  13. #223
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    Hi mamamax,

    I'm sorry to hear about the pain and progression. Maybe you could contact the Schroth people and they could train you in their methods...gratis? If you were happy and satisfied, you could end up being a good spokesperson for them. It would be very interesting to see if they were able to stop the progression.

    I would be very interested in hearing all about it.

  14. #224
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    Thanks Ballet Mom - I don't think too much about it (now) ... for the most part I've just taken the condition in stride. I don't think that such a laze fare attitude would be so wise over the next few decades though.

    As for the suggestion that I receive free services in exchange for advertising (basically) well, that ain't gonna happen! Actually if I could do what ever I wanted, I would not only learn it for myself but also become a physical therapist and learn how to teach it to others. You would probably find me in the free clinic offering services to those who couldn't afford it. Another life time perhaps.

    All I can do for now is explore. And while I've been fortunate enough to have learned a little - adequate instruction is lacking. Ever so often I think of Katherina Schroth and of how she discovered so much on her own. Martha Hawes as well. And that ballet teacher you have told us about. Such people have learned things that not only stop this condition in its tracks but in some cases, reverse it. What do they all have in common? A keen sense of body awareness, and how to change it through movement (I think). So until I can go to Germany, or Wisconsin, or California, or New York City .... I guess I'm doing the only thing I can do which is to learn more about the condition in general, more about my own body specifically - theory, theory, theory - and then one day ... better understand what I will be taught. Apologies if I have been too vocal


  15. #225
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    Quote Originally Posted by mamamax View Post
    All I can do for now is explore. And while I've been fortunate enough to have learned a little - adequate instruction is lacking. Ever so often I think of Katherina Schroth and of how she discovered so much on her own. Martha Hawes as well. And that ballet teacher you have told us about. Such people have learned things that not only stop this condition in its tracks but in some cases, reverse it. What do they all have in common? A keen sense of body awareness, and how to change it through movement (I think). So until I can go to Germany, or Wisconsin, or California, or New York City .... I guess I'm doing the only thing I can do which is to learn more about the condition in general, more about my own body specifically - theory, theory, theory - and then one day ... better understand what I will be taught. Apologies if I have been too vocal

    Apologies? Absolutely not! You're doing great!

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