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

  1. #76
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    Quote Originally Posted by mamamax View Post
    So as a patient - the more questions asked in the literature, the better for me (and others), as we look for answers. For example (and not to start a raging debate, I'm truly curious as a patient): the first surgery for scoliosis correction was done in 1865 (French surgeon, Jules Guerin). So we have a surgical history of 145 years, and literature to go with. Yet there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation). Well none that I can find anyway, and admittedly I have not read all the literature. You read much more - does this exist in the literature?[/COLOR]
    I think there is data on H rods in the out years or past 10 years anyway. The T fusions are sailing along years out as a generality as far as I know though there are of course exceptions. Not so true for L fusions unfortunately.

    I think H rods for T curves are a "solution" at this point to progression but Linda will correct me if that is not a good description of the state of affairs. And pedicle screws improve on H rods so I expect those are "solutions" for T curve also.

    Not sure about the state of the art w.r.t. L curves. Hopefully pedicle screws will "solve" the problems seen with H rods.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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  2. #77
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    Interesting Sidebar #2 - Why is this demonstration taking so long?

    Quote Originally Posted by Pooka1 View Post
    Schroth has been around since 1921 and Weiss is asking in 2009 if it is effective.

    I guess the world, including Weiss, is still waiting on that answer.

    I realize demonstrating the effectiveness of PT is a tall order but if 88 years isn't sufficient time and given the 10,000+ patients then I wonder if it can be demonstrated.
    Yes, demonstrating effectiveness, is a tall order. While the method has been "around" since 1921 - the historical context shows: that it began (in generation one) with Katharina Schroth, who was a lay patient like myself (well maybe more than a few notches above me actually). She was not a scientist. But she did have a scientific and artistic mind - and she did become a physical therapist and developed this method rather single handedly (impressive). So in generation one, we find the method is born and implemented in Germany where it finds respectful acceptance - but not by a scientist producing scientific papers which would add to the literature.

    Generation two, continues with her daughter Christa - who continues the clinic, and treatment of patients based upon the work of her mother. Again we do not find a scientist who contributes to the western literature. Her son Hans, near grows up in the clinic while efforts are made to expand its operations.

    Generation three finds Christa's son Hans - who does become an orthopedic surgeon, continues the work of the clinic and treating patients - and finally Schroth finds scientific contribution to the literature - along with an updated method (based on the old) which offers out-patient scoliosis rehabilitation. His first published study on that will be available in a few months - I'll be sure to post a link when it is available.

    So, we only have this contribution to the literature since roughly 1991 - or 19 years. Within this time span we do find one clinic established in the United States (Wisconsin). That was fast! The contribution towards out-patient rehabilitation, is just beginning. Not a lot of time for one man to contribute all that needs to be contributed in order to effect a major change in western medical methods, though he may be one of the literature's most prolific authors. It's a fascinating history really, I would love to read a book about it - actually, I'd like to write one :-)

    Where are all the case studies? I wonder if the case studies that were done from 1921 to roughly 1990, which were not documented by scientists - were not done to code (so to speak), or not done in such a manner as to be literature worthy. I don't know, just a thought.

    I don't know how many case studies have been scientifically constructed and published - but your question makes me want to find out. Certainly there are many which I believe are not yet even translated and which exist in German journals. And some may exist in the 13 books Hans has written. To my knowledge, only one of those books is in English - The Best Practice Method. I'm actually waiting for a copy of that to arrive & will share the information in it after reading. I wouldn't mind having a copy in German as well - so as to learn German that way. One of my off forum German friends (a Schroth patient) learned English by reading Harry Potter - kind of cool ... I wonder if I still have it in me to attempt such things.

    Anyway - hope this helps answer the question of why things take so long. Overall, I think it can be said that implementing new methods into an established medical system - takes time, and is a rather slow process. Had the technology of today, existed in 1921 ... this could quite possibly be a much different story, in this part of the world. Certainly the method is well established in Germany.

    Last edited by mamamax; 08-03-2010 at 07:53 PM.

  3. #78
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    Quote Originally Posted by mamamax View Post
    Certainly the method is well established in Germany.
    A poster from Europe said it is still fringe even in Germany.

    And why are fusions still occurring if there is an effective non-surgical treatment?

    And why hasn't Weiss won the Nobel in physiology or medicine?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  4. #79
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    why, why, why .... Some cheese with the whine? (joke)

    Quote Originally Posted by Pooka1 View Post
    A poster from Europe said it is still fringe even in Germany.

    And why are fusions still occurring if there is an effective non-surgical treatment?

    And why hasn't Weiss won the Nobel in physiology or medicine?
    Well maybe the definition of well established would mean - many patients there seek out this method which certainly has been accepted by patients - and by the medical professionals there who write what we would call prescriptions (referrals I think they call it there). At one time (I do not know about now) treatment was covered by insurance - according to my brother's German pal. But posters and pals are not the best sources of information - patients and parents are better. Over in the German forum, is found such things. I imagine fusions are still done for many reasons. I don't look at this from the perspective of which method is better - but rather from the perspective of choice - or at least having a choice in patient care. As to why Weiss has not won the Nobel - that takes lots of referrals ... quite a bit of politics involved actually, among other things - including time. If Gore can win one - hey, there's hope :-) Actually - choosing a treatment method (in my world), doesn't require that the provider win a Nobel. Boy - you ask a lot of questions on re-direct! It's ok - It's all good :-)


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    Quote Originally Posted by mamamax View Post

    So as a patient - the more questions asked in the literature, the better for me (and others), as we look for answers. For example (and not to start a raging debate, I'm truly curious as a patient): the first surgery for scoliosis correction was done in 1865 (French surgeon, Jules Guerin). So we have a surgical history of 145 years, and literature to go with. Yet there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation). Well none that I can find anyway, and admittedly I have not read all the literature. You read much more - does this exist in the literature?
    If anyone has a reference to the literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively - will you please post it? As a patient, I would very much like to read it.

  6. #81
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    Well Mamamax, surgery halted any deterioration as far as scoliosis goes for 44 years with me. Is this what you mean?
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  7. #82
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    Same here, I had my first rod (which was a Harrington) put in 24 years ago and my thoracic curve - a very progressive infantile one - hasn't moved an inch since Likewise, I had the fusion extended 16 years ago and my lumbar curve hasn't budged either. I would bet money on them never, ever deteriorating in my lifetime.

    If you're talking about disc degeneration underneath the fusion though, of course that does happen (I had my fusion extended again because my L3-L4 disc wore out) but then, unfused adult friends of mine with large curvatures have also had disc degeneration due to the uneven loads on their vertebrae. It's the pain that this causes which leads them to have surgery too, rather than wanting to stop their curve from progressing or gaining cosmetic correction (before they had the pain, these things weren't an issue for them).

    I'd be very surprised if there weren't any papers that have followed people up longterm though! I would assume though, that papers tend to be written about those patients who develop problems, because doctors can learn from them.

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    Quote Originally Posted by tonibunny View Post

    I'd be very surprised if there weren't any papers that have followed people up longterm though! I would assume though, that papers tend to be written about those patients who develop problems, because doctors can learn from them.
    I think Linda will post if she has some citations.

    I think Linda has confirmed that most T fusions, even with H rods, stabilize the spine long term. No conservative treatment can touch that or come close. T fusions are "one-stop shopping" surgery for life or at least that is the open claim. Long fusions into the lumbar and only fusing the T cure in double majors of course are completely different issues.

    The open surgery question is L curves but non-surgical treatments purveyors have been trying for far longer than surgeons to solve that. The best hope is pedicle screws at the moment it seems not only to stabilize the curve but hopefully prevent adjacent level disease in these patients.

    Let's see if Linda comments.
    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."

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    It would be wonderful if pedicle screws help prevent adjacent disc disease. I'm not banking on it, so it will be fab if that's the case. I'm very much expecting my L4-L5 disc to go at some point, but hopefully I'll have plenty of good years to enjoy it beforehand. I'm very active and climb mountains, cycle, and hike for hours through rough and rolling countryside I'm not scared of having the fusion extended again though; being fused really doesn't restrict you as much as people think it will and I doubt it would make much difference to me. Having the fusion taken down to L4 didn't make any difference whatsoever. I just look at TiEd for inspiration
    Last edited by tonibunny; 08-04-2010 at 05:16 AM.

  10. #85
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    Quote Originally Posted by mamamax View Post
    Yes. I understand what you are all saying, and they are good points.

    As a patient seeking to make a choice that is best for me ... I would like read some literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively.

    This would eliminate much worry over future pain and revision - a good worry to eliminate at any age :-) Patient testimonials are good - literature is what I'm seeking - specifically, as stated above.
    You have a TL curve with deterioration and pain, yes? I would be shocked if patients like you haven't been documented in the literature.

    Of course the TL aspect seems like an open question long term irrespective treatment modality. Pedicle screws seem like the best hope as far as I can tell. Hopefully Linda will comment.
    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."

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    Quote Originally Posted by Pooka1 View Post
    You have a TL curve with deterioration and pain, yes? I would be shocked if patients like you haven't been documented in the literature.

    Of course the TL aspect seems like an open question long term irrespective treatment modality. Pedicle screws seem like the best hope as far as I can tell. Hopefully Linda will comment.
    Well then the literature surely must exist - I would like to read it. Any references yet?

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    Quote Originally Posted by tonibunny View Post
    It would be wonderful if pedicle screws help prevent adjacent disc disease. I'm not banking on it, so it will be fab if that's the case. I'm very much expecting my L4-L5 disc to go at some point, but hopefully I'll have plenty of good years to enjoy it beforehand. I'm very active and climb mountains, cycle, and hike for hours through rough and rolling countryside I'm not scared of having the fusion extended though; being fused really doesn't restrict you as much as people think it will and I doubt it would make much difference to me. I just look at TiEd for inspiration
    Yes it is just a hope.

    And I guess we have to include folks with long fusions to the pelvis as having their scoliosis "solved" in many if not most cases. Certainly no conservative treatment could have touched Ti Ed's case towards the end which is why he had the surgery.
    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."

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    Reference to the Literature

    Yes. I understand what you are all saying, and they are good points.

    As a patient seeking to make a choice that is best for me ... I would like read some literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively.

    This would eliminate much worry over future pain and revision - a good worry to eliminate at any age :-) Patient testimonials are good - literature is what I'm seeking - specifically, as stated above.

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    Quote Originally Posted by mamamax View Post
    Well then the literature surely must exist - I would like to read it. Any references yet?
    Why don't you get 2-3 opinions from top surgeons and see what they say about cases like yours and about the literature?
    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."

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    Quote Originally Posted by Pooka1 View Post
    Why don't you get 2-3 opinions from top surgeons and see what they say about cases like yours and about the literature?
    Actually Pooka1 ... I have had far more than 2-3 opinions from top surgeons .. I just do not advertise it.

    I want to read the literature - and specifically in reference to the halting of deterioration 10 years post operatively, before making any final surgical decision.

    We have an active scientific community here - maybe someone can find this.

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