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Thread: Scoliosis and TAMARS treatment

  1. #46
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    It does appear that practitioners using unproven methods have a lot to loose from proper evidence as it might just show that what they are selling to the unsuspecting public has no real value, or might even be harmful and they would be at risk of loosing their livelihood. As lots of "alternative" practitioners make a good living out of selling "hope" (which might be false hope) they have nothing to gain from evidence of effectiveness and will resist therefore proper scientific evaluation of their methods. Evidence is their enemy

    As patients, or parents of patients, we are in the exactly opposite position as with the wide range of treatmentoptions on the table, and knowing that time doesn't work in our favour, we need the best available evidence to decide which treatment to choose. we cannot afford to loose time on something what at best makes no difference and at worse could make things worse. Evidence is our friend (although it can be a very harsh and painfully honest friend, like any good friend should be)

    Two guiding principles;
    1) Lack of evidence of benefit= lack of evidence of potential harmfulness
    2) False hope = worse than no hope (whilst providing a good income to the practitioner dealing in it)
    Last edited by gerbo; 05-29-2007 at 07:19 AM.

  2. #47
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    Quote Originally Posted by structural75
    Celia,
    What's your point? Do you have anything to say regarding your serious lack of knowledge on the subjects at hand? You've managed again to skirt around every question I ask and points on the matter that aren't insults or abusive remarks. You might want to take a step back and reconsider your purpose for posting this slanderous non-sense and abuse. It seems you may have some serious insecurities.
    UNBELIEVABLE!!!!


    Gerbo,

    Of course!!!! This explains lack published studies....Gerbo you are one smart dude!!!! Needless to say this will have no impact on these delusional practitioners who have their heads in the clouds and their eyes firmly set on their bank accounts. Don't hold your breath because there is sure to be an extra long winded novel by "he who must be obeyed"
    Last edited by Celia; 05-29-2007 at 07:06 AM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  3. #48
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    gerbo

    As I have already stated, we are trying to get the proper evidence, to show to patients or parents that this treatment is of benefit. I understand your reasoning that patients do not want to go down a route that might prove useless or even dangerous. I would feel exactly the same. However if another sufferer came to me and said that he, or a child of theirs was well improved after one of these treatments, then I would certainly look at it. The treatment worked for my son so I have first hand experience.

  4. #49
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    Gerbo,

    It does appear that practitioners using unproven methods have a lot to loose from proper evidence as it might just show that what they are selling to the unsuspecting public has no real value, or might even be harmful and they would be at risk of loosing their livelihood.
    It appears the same for your Drs who are promoting this brace only to find it is producing secondary curves of supposedly "no consequence". We all know that if I worked with someone and they developed a secondary curve as a result you'd be all over me casting doubts... Am I right?

    I would love for someone with a deep pocket such as your doctors and brace company to offer the money to fund a study. Unfortunately I make a humble but adequate living and I don't have the deep pocket you're suggesting I do. If what I did was a scam then why do people continue to come and then get on with their lives in a better place without ongoing treatment for years to come? There's no way you can sit there and tell me, or anyone on this forum, that what I do is ineffective.

    And in case you hadn't read my previous posts, I run a not-for-profit childrens scoliosis clinic. No Profit... No Charge... as I'm fully aware that parents are already in debt trying to cover their conventional medical expenses. And even if there were studies 'proving' positive effects, I wouldn't charge for it. That's what I consider "false hope". Relying on studies that show far less than 100% results only to have only a handful achieve that success (such as the case with bracing). How many people utilize bracing with the "hope" it will work only to discover years later it didn't matter?

    It's interesting to note that despite your "evidence" based approach you are dealing with a rather tenacious secondary curve brought on by your "evidence" supported brace. ??? What happened to do no harm? Do you in fact know for certain that the brace is NOT causing harm? Is there a study in your library of info that 'proves' this supposed fact?

    Again, neither you nor some others here have the slightest bit of understanding about these methods, even the mechanism behind the bracing. So you can cast doubt into this forum about other approaches causing potential harm, but until you get the slightest clue about what you're talking about from a real life anatomical/physiological standpoint then you have absolutely no idea what you're suggesting.

    If neither of you can have a discussion or an interest in understanding the mechanisms behind how these things work (including your brace) then I see no point in continuing down this path again.

    structural
    Last edited by structural75; 05-29-2007 at 08:26 AM.

  5. #50
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    this is how one looks at available evidence re bracing;

    there is a multitude of studies which show that patients being treated with hard braces do better than people not being treated (other factors being the same). However these studies also show that a group will progress regardless of bracing, but that group is smaller in the "braced" group. As a parent (or clinician) you make the judgement that "based on the available evidence" you have a better chance controlling scoliosis with a brace, than without; but no garantee!!

    with regard to spinecor; there is currently only one big published study, which happens to show much better outcomes than not bracing, and even better outcomes than hardbracing.

    However, is is clear from available evidence (so no hiding or pretending there) that not everybody benefits from it. Once again; the chance that you avoid surgery is bigger when you use the spinecor compared to not using anything, but there are no garantees.

    There are lots of other factors which have to be taken into account but at least with spinecor and other forms of bracing we have something to base our decisions on.

    with regards to the effectiveness of your treatment; I am sure that we have agreed in the past that your treatment might make people feel better, but has never significantly improved the curve of a scoliosis patient, or stopped its progression. Or are you claiming again that it does?

    And why do people keep coming? In desperation hope is very seductive..... (been there, done that....) And no doubt, a good relaxing backmassage does anybody the world of good (but as far as the available evidence suggest will not improve anybody's scoliosis)

  6. #51
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    Gerbo,

    1) It has clinically proven to change a scoliotic curvature. Whether or not it's in a study does not negate its reality. http://erikdalton.com/articles.htm#S...20Case%20Study
    but has never significantly improved the curve of a scoliosis patient,
    Interesting that you're now stating supposed facts with not an ounce of proof to back it up. Where did you get this stat from? Have you spoken with anyone and everyone with scoliosis who has utilized this approach? In addition, it has been very successful at treating many conditions that conventional medicine could not affect. Do your research!

    2) Structural integration/fascial manipulation has nothing to do with massage! Please educate yourself before making such assumptions. It is sometimes referred to as such because many folks need something to compare it to to understand it. Otherwise, it has nothing to do with relaxing muscles or stimulating blood flow, as massage is intended to do. www.theiasi.org

    3) People come to me often after more conventional and widely accepted methods fail to achieve the desired effect. I don't continuing treating anyone if we aren't getting results (for any condition).

  7. #52
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    I vaguely recall the title of this thread is TAMARS rather than STRUCTURAL INTEGRATION!!!! Gerbo, I urge you not to provide what's his name a forum to advertise his unsubstantiated methods whether or not they are "non profit" I find these claims hard to believe as well, since his credibility is virtually nil with me at this point.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  8. #53
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    Just a couple of questions i picked up from reading posts in this thread

    Celia you mentioned that spinecor doesn't cost you because you are insured, my understanding of insurance is that once you make a claim it pushes up premiums so you are paying for it in reality as the more we claim the more we pay.

    Gerbo, in your last reply you didn't answer the question of the secondary curve that seems to develop in a number of cases (if you did sorry i missed it).

    Just one other point wasn't spinecor at one time classed as being "left field" and out on the edge its in developmental stages, were people as cynical then about spinecor as a number seem to be about certain treatments that are now "left field" and out on the edge of so called mainstream treatments.

    Why can't we all live and co exist with one another in harmony instead of always trying to discredit after all the reason why were all here is we are either suffering ourselves, doing our best for our loved ones or trying our best to control this dam condition.

    Ray, i hope you get the study of the ground with the university and it proves to be a massive success it would be great to read a success story instead of all this negativity

    z

    p.s. i never seen a poor surgeon

  9. #54
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    Quote Originally Posted by zuma
    ...Celia you mentioned that spinecor doesn't cost you because you are insured, my understanding of insurance is that once you make a claim it pushes up premiums so you are paying for it in reality as the more we claim the more we pay.

    Thank you for pointing out the obvious to me, I'm well aware how insurance works and I don't believe the majority of people are going to put in a claim for the spinecor brace. Last time I checked most insurance companies weren't suffering financially


    Quote Originally Posted by zuma
    ...Why can't we all live and co exist with one another in harmony instead of always trying to discredit after all the reason why were all here is we are either suffering ourselves, doing our best for our loved ones or trying our best to control this dam condition..
    You should address your question directly to what's his name, since he made the following comments. I'm all for peace, love, harmony and touchy feely moments but certainly not with someone as abusive and downright rude. This man professes to be an "MD" and is treating children???




    Quote Originally Posted by structural75
    ...You're a heartless #@$@$! You have some real balls to question and belittle my personal experience and suggest that I'm being dishonest. I'm glad your daughter's doing well and hope it continues, ...update me when she's quite a bit older though, and finished her major growth spurts.

    What's your point? Do you have anything to say regarding your serious lack of knowledge on the subjects at hand? You've managed again to skirt around every question I ask and points on the matter that aren't insults or abusive remarks. You might want to take a step back and reconsider your purpose for posting this slanderous non-sense and abuse. It seems you may have some serious insecurities...
    Last edited by Celia; 05-29-2007 at 01:11 PM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  10. #55
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    Electrical stimulation for scoliosis/ Pilates etc/this forum

    Mr. Knox/structural

    Electrical stimulation was widely tried in the 1980's. Sounded great in some smaller studies. Here is a study with a long follow up I found in the National Library of Medicine:

    1: Clin Orthop Relat Res. 1988 Apr;(229):107-13. Links
    Electrical stimulation in the treatment of idiopathic scoliosis.O'Donnell CS, Bunnell WP, Betz RR, Bowen JR, Tipping CR.
    Thomas Jefferson University Hospital, Philadelphia, Pennsylvania.

    Sixty-two fully compliant patients (with 94 curves) met protocol criteria of 20 degree-39 degree curves, Risser iliac crest signs of 0, 1, or 2, and no prior treatment. Both clinical and roentgenographic examinations were performed before, during, and after treatment. The follow-up periods averaged 2.3 years, with a 3.2-year average follow-up period for patients who completed, rather than failed, Electro Spinal Orthosis (ESO) treatment. Seventy-one percent of the 20 degree-29 degree curves and 66% of the 30 degree-39 degree curves had progressed 5 degrees or more at follow-up evaluation. Fifty percent of the patients had a follow-up curve of at least 40 degrees or were treated by posterior spinal fusion and were considered treatment failures. The curve progression paralleled that found in natural history studies, and the rate of failure exceeded that found in orthotic treatment studies.

    PMID: 3258214 [PubMed - indexed for MEDLINE]

    Regarding Pilates:
    I have been practicing that modality for at least 7 years: Two years before my revision in 2002 and since then. I was fortunate to have a dedicated certified instructor who worked around my situation. It is very hard work and requires continuous committment. It had nothing to do with "abs" being an American dream. It had helped reduce pain pre-op and helped me regain conditioning post-op which keeps me totally pain free.

    FYI Joseph Pilates was a nurse working with the war injured in England. He devised various exercises/equipment with which the soldiers could regain as much function as possible. Those techniques are employed in the Pilates methods.
    No one I ever met in that program asserted that Pilates improved scoliosis but it did gave me an improved stamina and muscle strength despite my long fusion.

    Regarding Tamars: Approach the Scoliosis Research Society with your ideas.

    In the US, a study must be cleared by an IRB (institutional review board) to make sure it has a reasonable hypothesis and the risks/possible benefits to the proposed treatments are made known to the prospective patients. The risks being harm from delayed treatment or in fact FROM the treatment. Most studies do not require the patient to pay out of pocket but are paid from grants.

    Ninety-nine percent of us on this forum are sufferers of this heartbreaking disorder called scoliosis. We share our experience, strength and hope with each other thus we have a special validity. Many others have posted great NEW ways to help us. Many of us have tried, spending lots of money.

    When someone posts saying scoliosis resulted from a "fall on the bottom" it comes across to us as totally ludicrous when a familial gene has been identified as causing "idiopathic" scoliosis.
    Not using x-rays or at least a MRI to assess scoliosis is irresponsible. What if there is a tumor or other defect not visible to the naked eye?

    If you are so successful as you claim, word of mouth will spread far and wide and the medical establishment won't be far behind. In the meantime it looks like a hard sell.




    Please do us a favor and don't waste our time.
    Last edited by Karen Ocker; 05-29-2007 at 02:16 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

  11. #56
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    Quote Originally Posted by Celia Vogel
    Toni,

    You don't really believe this charlatan do you????? He's agreeing to treat one of your friends for a couple of days, that proves nothing. On top of that no x-rays to show results!!!!! Ya, I know where this is going....
    Hey Celia

    I'm interested that Ray's actually seeking to have proper scientific studies done by a prestigious London university. You know as well as I do that these studies will HAVE to include x-rays as proof I can't believe anything without x-rays, and I can't recommend a treatment like this to anyone without evidence taken from solid independent research, but I respect the fact that Ray's making the effort to get that research done. That seems like a lot more than most "alternative practitioners" here seem to be prepared to do!

    I couldn't send a friend or acquaintance along to Ray without the evidence from proper studies either (as staff at SSO I couldn't put someone at any sort of risk from an untested treatment), but I respect the fact that he's put his money where his mouth is and said "yes OK, send someone to me and I'll treat them for free so you can see the results". Again this isn't something I've ever seen another alternative practitioner do. If I wasn't already fused I'd take him up on his offer myself

    There are a few things that I don't really agree with (ie the idea that scoliosis is caused by a fall, and that Ray could see a curve that was missed on x-ray and MRI). These things will come out in the scientific studies though. I respect Ray for answering all my questions, and basically I'm reserving judgement until I get to see the studies. I think that's fair

  12. #57
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    Karen/Celia

    Electrical stimulation- where has this come from- is this all you know about the TAMARS treatment. Get your facts right before you bring up such rubbish. There is nothing electrical about TAMARS.
    Reputation far and wide- does the fact that the average time patients take to get to our clinic is about 2 hours. Some come from 400 miles away which is as far as you can get on this island. We have regular patients from England and the occasional one from America. This is all because of our reputation. Which is spread by our patients. We are getting favourable comments from orthopaedic surgeons and we are treating GP's who cannot get sorted anywhere else. We have had nurses sent by hospitals and we have treated dozens of nurses.
    We must be doing something right.
    If I read things correctly, a gene has not been found that causes I.S. It sounds more like a gene has been found in patients that have developed I.S. that is not present in normal patients. Who knows what this gene does. It may just make some people more flexible or something of that nature.
    If the other postings you do to these forums are like this then I feel sorry for the forum.
    Last edited by Rayknox; 05-29-2007 at 04:55 PM.

  13. #58
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    Celia,
    This man professes to be an "MD" and is treating children???
    When did I profess to be an MD???? Have you stooped so low as to outright lie? You're nuts!

    Karen,

    Who suggested electric stimulation as a treatment for scoliosis? Certainly not Ray or myself... As a "medical professional" you should know that electric stim. is not going to have any effect on a scoliotic curvature. Why the IRB wasted time and money on that "reasonable hypothesis" is beyond me.

    Pilates - No need to explain it, I've done it myself for a brief time and I have several colleagues who are certified Pilates instructors in addition to their more primary credentials. What I find ironic is that you trust a Pilates instructor to manage your scoliosis. Are you aware that their training is minimal, revolves around learning and teaching the exercises, consists of VERY basic anatomy and virtually no physiology training, and they are NOT trained adequately if at all to address musculoskeletal dysfunctions (unless they are also a PT or such). Joseph Pilates developed his exercises to first and foremost treat his rickets, among other childhood illnesses he had. Its original name, 'Contrology', as given by Joseph was designed to give him stability which he lacked from the rickets.

    In the US, a study must be cleared by an IRB (institutional review board) to make sure it has a reasonable hypothesis and the risks/possible benefits to the proposed treatments are made known to the prospective patients. The risks being harm from delayed treatment or in fact FROM the treatment. Most studies do not require the patient to pay out of pocket but are paid from grants.
    Would you consider the secondary curves imposed by the spinecor brace to be a harmful?

    The risks being harm from delayed treatment or in fact FROM the treatment.
    Herein lays a major problem with these "studies". In order to validate something to people like you we have to put people at risk by having them stop any other form of treatment. I have always advocated the adjunctive use of these types of approaches. The advantage to not having an exclusionary study is that we don't put people at risk by asking them to stop current methods of treatment.

    When someone posts saying scoliosis resulted from a "fall on the bottom" it comes across to us as totally ludicrous when a familial gene has been identified as causing "idiopathic" scoliosis.
    Not using x-rays or at least a MRI to assess scoliosis is irresponsible. What if there is a tumor or other defect not visible to the naked eye?
    Nobody said ALL scoliosis is caused by a coccyx injury... but some most certainly are... Do you have evidence showing the contrary or was that another unsubstantiated claim?. As Ray mentioned, the gene was not shown to "cause" scoliosis, it was simply present in SOME individuals with scoliosis. That leaves a lot yet to be discovered and clarified. You should be ashamed as a medical prof. stretching the truth like that just to try and validate your argument. As for x-rays/MRI... My patients use them under the care of their MD specialists. Who said I didn't?

    It's only a waste of time for those too ignorant/stubborn to open themselves up to other possibilities and approaches.

  14. #59
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    And you're all completely avoiding my questions regarding your understanding of why and how these methods work (including bracing). If you can't give me, and other inquiring members of this forum, a sound anatomical and physiological reason why these approaches are 'supposedly' ineffective, then quit your ignorant bantering. Not one of you have any legitimate reason why these methods couldn't be effective in some cases other than your own fear that you haven't made the best possible decisions yourself if they were.

    The least you can do is make some kind of mature attempt to understand some things you obviously aren't informed about. You don't even understand how the braces that your using work!!!??? And the only argument you ever put forth is about the lack of studies. Doesn't anyone have a mind of their own. Here you talk about wasting precious time on "alternative" treatments and in the meantime you're sitting on your hands waiting for the next study to arrive to give you all the answers. (Not to mention the brace is failing some and causing relatively serious complications in others) How long do you wait to consider a more comprehensive, responsive and intelligent approach (bracing + ?)?

    If you'd rather sit on your hands and wait, then fine. But you have no right to try and comment on things that you don't understand, especially when those comments are meant to discredit.

  15. #60
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    once again, on general principle, simply because without evidence of effectiveness we do not know whether we could be doing more harm than good......

    (and if we wanted to consider choosing something "additional" on top of bracing , based on the persuasive say-so or personal experience or divine gifts or aggressive sales tactics of the practioner involved there is so much to choose from that one wouldn't know where to start; raindrop therapy, SI, pyramid therapy, colourtherapy, chiropracters (in lots of different shades) laying on of hands, dancing round a campfire at midnight whilst chanting traditional dutch nursery rhymes; the list of "alternatives" is endless.)

    I have never said that within that labyrinth of "alternatives" there might not be something that actually works, and who knows, TAMAR could be one of them, but the only way of knowing would be through proper and plausible documentation of what the starting position is (and there is no substitute for x-rays, clever black cats or not) and what the change is after short or longterm application of the treatment involved. And once again, xrays will provide the hard evidence.

    Any significant scoliosis should be under consultant supervision anyway, so xrays and their results should be available (if only via GP) Any unexpected and miraculous improvement would without doubt be picked up and documented. Although collecting that type of information doesn't constitute proper science as such, at least it is a beginning.

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