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  • #76
    Originally posted by Pooka1 View Post
    I think that is settled, no?

    That's why I keep shifting back to the case of halting or regressing large curves and I think Mamamax has joined me in that with her reference to Hawes.

    Wanting an effective conservative treatment for that is not, perforce, going to make one possible if that isn't in the cards of the universe.
    I guess I'm thinking now that climbing this wall doesn't matter. (And maybe I'll think something else tomorrow.

    If, on a case-by-case basis, we'd make exactly the same decisions about whether someone should seek surgical care or whether they should seek conservative care, what does it matter *what* our (varying) hypotheses are? If an adult shows up in the forum in alot of pain with a rapidly progressing curve, we'd all say they should start looking seriously at surgery. If an adult shows up with mild to moderate pain and a non-progressing curve, we'd all say they should look into conservative care. I think we'd differ about when to recommend surgery/bracing/conservative care for younger patients, but I don't sense that any of us are very adamant about those differences - non-adult patients are just trickier.

    So, where we differ *is* just in belief/hypothesis, and not in practice. I believe/hypothesize that some more-then-randomly-expected number of patients using that conservative care for pain treatment will stop progressing. You don't. Given the state of medical knowledge, we'll probably never know which of us is right.

    Wow, I've gone Zen!
    Last edited by hdugger; 02-08-2010, 06:32 PM.

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    • #77
      Originally posted by Pooka1 View Post
      Correct. For example Schroth has been at it for ~90 years. How many more years do they need to rule it in or out? I'm actually asking that seriously, not rhetorically.

      That is an interesting hypothesis. I think some of these conservative methods have been studied quite a bit. What's holding Weiss back?
      He's already getting paid for Schroth in Germany. He doesn't need to show its effectiveness. He's convinced it works and it's up to the US clinicians to catch up. At least, this is the general impression I got from him.

      Comment


      • #78
        Originally posted by skevimc View Post
        He's already getting paid for Schroth in Germany. He doesn't need to show its effectiveness. He's convinced it works and it's up to the US clinicians to catch up. At least, this is the general impression I got from him.

        Do you know what type of degree Weiss has? Is he an orthopedic surgeon? Does he still operate?
        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."

        Comment


        • #79
          Originally posted by Pooka1 View Post
          Do you know what type of degree Weiss has? Is he an orthopedic surgeon? Does he still operate?
          I know for a fact that he doesn't operate. I can't remember specifically if he has surgical training or not. I am thinking he does not. Don't remember what Asher told me.

          I just read what this thread was about.

          A couple of thoughts.

          First, studies like this will be used to say conservative methods are useless. Even though that is not the finding of the study because they don't collect enough information to show that. They mention some weaknesses in the abstract and the discussion but the take-home message is obvious.

          On the one hand I see the general information as beneficial. Don't prescribe treatments that don't show any effectiveness, e.g. QOL, disability, etc...

          On the other hand, I think studies that support the general clinical dogma are held to a different standard of proof. I can't help but wonder if a PT could publish a report on ~100 surgical outcomes and didn't mention or list the specific surgeries each patient received (or any other patient data) and then use that as evidence to question the cost effectiveness of surgery. As further proof, a well controlled placebo trial on arthroscopic knee surgery was published a year or so ago and showed no difference between groups. Yet arthroscopic knee surgeries are still performed.

          Second, As far as surgeons funding exercise based studies. Dr.'s Asher and Burton funded the torso-rotational study from their clinical practice research fund. I would give the majority of surgeons the benefit of the doubt that if a conservative method was shown to work they would prescribe it in a heartbeat. Are they going to fund the study? Most likely not. Our study is the exception to the rule. But surgeons are not hurting for work. If they can sign a patient up for some PT and know that it'll work, they'll do it. There will always be another surgery to schedule.

          Third, I blame the PT world for the basic finding of the original study. While I strongly support the PT and rehab world I am disappointed with the quality of research PT's are doing, although it is getting better. Over the last decade I've watched PT's begin shifting to a DPT (clinical doctorate) because they want direct access. Yet they make very little effort to show that their methods and techniques are effective. Some of that has to do with the relative newness of PT. At least from the stand point of being viewed as having meaningful contribution. From BS to MS to DPT without slowing down and really studying their treatments from a physiological standpoint. In that sense, MD's and related research are decades ahead. If ANY exercise based therapy wants to be taken seriously, then it's up to the clinicians and researchers. They have to give MD's a reason why PT is different than chiropractors. Sloppy studies just prolong the battle.

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          • #80
            Good thoughts, as always. I remember reading about the meeting with Dr. Weiss. I think it is a true pity that some sort of study didn't result. I understand he no longer is Director of that Clinic and is now in private practice.

            Anyway - For Sharon, Weiss' credentials: http://www.scoliosisxpert.com/uk/pageuk.php?va=1

            • Physical Therapy School (University of Mainz, Germany 1977 – 1979);
            • Physical therapy examination 1979;
            • Studies of medical science 1979 – 1985 in Regensburg, Mainz and Frankfurt; Examination 1985.
            • M.D. 1986;
            • Residency in traumatology 1986;
            • Residency in orthopedic surgery 1987 – 1992.
            • Orthopaedic surgeon since 1992,
            • Specialist for manual medicine and physical therapy 1992;
            • Specialist for physical and rehabilitative medicine 1996,
            • Trained in psychosomatic medicine 1996;
            • Specialization for traditional chinese medicine 2000.

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            • #81
              Mamamax, I am not so sure that was necessarily translated correctly.

              I am not convinced he is an orthopedic surgeon equivalent to those in the US.

              I also have questions about if he can still practice medicine since he subsequently got some "interesting" training (if that is translated correctly).

              If he is a surgeon presently, I think that other surgeon would have referred to him as such. But that didn't happen so I have my doubts, especially after what McIntire said and he met the guy and visited his facility.
              Last edited by Pooka1; 02-09-2010, 04:40 PM.
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • #82
                Originally posted by skevimc View Post
                I just read what this thread was about.
                I just want to thank you for continuing to take the time to edify us bunnies. It's remarkable.
                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."

                Comment


                • #83
                  Thanks, Kevin. That was helpful.

                  It's been a long time since I was in medical research, but, when I was deciding on what further training to get after my MPh, my advisors told me that although I could participate in research projects with a masters or doctorate in Public Health, I would have a very hard time ever getting a project funded unless I got a medical degree. That's the reason I've put more of the onus on the physicians - because I believe they have to get involved if any of this work is going to get funded.

                  Have things changed in the intervening decades? Will you be able to get research funded on your own?

                  Comment


                  • #84
                    Can I just ask if you did a thesis for your MPh and what the subject of it was if you did? I mean if it isn't a secret.
                    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."

                    Comment


                    • #85
                      Originally posted by Pooka1 View Post
                      Can I just ask if you did a thesis for your MPh and what the subject of it was if you did? I mean if it isn't a secret.
                      Well, I went to Berkeley, and we don't do things the way everyone else does

                      I was in an experimental program that gave a joint epidemiology and biostatistics degree. Because it was largely aimed towards medical students from UCSF, with a smattering of students like myself who didn't have a medical background, it focussed on teaching the skills necessary for designing and making sense of research and didn't require a thesis. It should probably have been offered as an adjunct to the medical program at UCSF, but they didn't have the faculty for it, and we did.

                      Comment


                      • #86
                        Originally posted by Pooka1 View Post
                        I just want to thank you for continuing to take the time to edify us bunnies. It's remarkable.
                        Originally posted by hdugger View Post
                        Thanks, Kevin. That was helpful.
                        I'm glad you are finding it helpful. I debated myself for several months about whether I'd want to 'out' myself if I signed up on this board. Especially since scoliosis research is something I'd like to eventually return to within the next decade. Everything I do and say on here is basically public and so I'd hate form something to be taken out of context or to experience any push-back if I choose to criticize the wrong person/study.

                        Originally posted by hdugger View Post
                        It's been a long time since I was in medical research, but, when I was deciding on what further training to get after my MPh, my advisors told me that although I could participate in research projects with a masters or doctorate in Public Health, I would have a very hard time ever getting a project funded unless I got a medical degree. That's the reason I've put more of the onus on the physicians - because I believe they have to get involved if any of this work is going to get funded.

                        Have things changed in the intervening decades? Will you be able to get research funded on your own?
                        Certainly having a clinical degree helps tremendously. If I were a better classroom type of student I would go back and get my MD. Luckily, it's fairly easy to recruit an MD or two for your grant. In many cases they just need to write a letter of support saying "we'll refer patients to you". As a non-clinician I think there is enough preliminary work that I could write a grant to NIH and get it funded for a conservative AIS management study (there are pilot study funding lines specifically for "new technologies/treatments"). There are two barriers. The first is to get a couple of doctors on board. The second is to collect enough data to make it worthwhile. NIH favors sexy data. MRI's, muscle biopsies, fine wire EMG, etc... A strong stance on physiology and mechanisms. It's why I'm doing the postdoc I am doing. I'm getting training in basic muscle phys. Molecular analysis, pathways, gene expressions, etc... Applying for funding looking only at clinical outcomes for conservative management will not get funded.

                        That being said, clinical outcomes are the only thing most MD's care about. As well, having a practicing clinician with a vested interest in the study is CRUCIAL for a clinical trial to succeed. I've coordinated 3 clinical trials of varying size. Only one met its recruitment goal. The trial where the doctor/nurse was the active recruiter. If a PhD student or postdoc or research assistant has to sit in clinic every week and 'beg' for patients, the study will fail (unless you can pay an official clinical coordinator (SF Bay Area $80-100k plus benefits). MD's have to be engaged. Clinical practices have to develop a research mindset (e.g. The clinicians need to automatically ask "what study(s) does this patient qualify for?" for every patient). Some say that MD's are too busy to remember every study. To an extent that is true. The US healthcare system is troubled in many ways. But I've sat in on clinics where the doctor remembers 3 of his own trials and continues to forget my trial unless I 'pester' him/her about every single patient every single week. Unless you have a great working relationship with a practicing MD, doing anything clinical will be incredibly difficult.

                        Comment


                        • #87
                          Just a few comments on this thread for now ... but I'll probably have more. The wheels are turning.

                          It seems to me a lot of emphasis has been placed on the 8 individual non-operative methods as *separate* methods. Isn't it feasible that every patient in this study *could* have tried all 8 ... maybe even concurrently? I know *I* did at times throughout my pre-op career (with the exception of adult bracing).

                          Also, the definition of "bed rest" is amazingly variable: I don't (simply based on experience) think it entails a stand alone modality. I certainly would be hesitant to equate it to something like "doing nothing".

                          Slapping Tiger Balm/Biofreeze/etc. on your back - and going to bed with an ice pack or heating pad as a end-day desperate measure - isn't all that rare in response to chronic back pain. As far as I know, no one really believes heat/ice/topical analgesic will permanently remedy chronic pain. Is it likely to become a day-to-day attempt at relief when nothing else works? Probably. BTW, it's tough to ice your back while you're walking around: Maybe it became "bed rest" simply because you can't comfortably DO it anywhere else. I seriously doubt it's just the same as "If I lie down, it'll go away". To me, "bed rest" describes "Enough with the gravity!".

                          Also, in my opinion, ODI is a poor gauge for all scoliosis pain. Looking at the questions, I can't even *answer* some of them. How do you rate activities that give you EXTRA pain when you hurt no matter *what* you do? I really want to stress here how used to chronic pain a person can become: Time and again, I see people post here about how badly they hurt - immediately followed by (genuine, I believe) apologies because "there are people who hurt worse". Only at the very end of my pre-op period was I in touch with HOW extreme my pain was: For me, it was tough to note progression over decades in something that began in childhood. It screws with your head when you can play ball like I do - but going into my office - and facing the phantom hands that pried my scapulae in opposite directions - put me in tears. Daily.

                          I don't think I can explain how stupid you feel about admitting you can't perform "sedentary work" (which is somehow the generally accepted rating for a valid disability) when you can slide into home plate. I never did (until the very end ... and when I'd stopped playing ball to get ready for surgery) because it sounded so absolutely asinine. Nevermind it was dead-on valid.

                          Reason #2,382 I will always be grateful for finding Dr. Hanson: He believed I hurt ... and he didn't ask me crap like "Well, how can you do that - but not *that*?".

                          Reason #2,383, he NEVER pushed me for surgery. He suggested yoga and Advil, gave me a non candy-coated run down of surgery, told me to get Wolpert's book ... then wished me well if he didn't see me again, and encouraged me to email him with any questions that might come to mind. In my heart, I KNOW the human in him hoped I never came back.

                          It really disturbs me when I read how surgeons only want to do surgery ... and I think *some* of that perception must stem from what the patient/parent is originally expecting to hear. That's just my $.02.

                          Pam
                          Last edited by txmarinemom; 02-09-2010, 08:04 PM.
                          Fusion is NOT the end of the world.
                          AIDS Walk Houston 2008 5K @ 33 days post op!


                          41, dx'd JIS & Boston braced @ 10
                          Pre-op ±53°, Post-op < 20°
                          Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                          VIEW MY X-RAYS
                          EMAIL ME

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                          • #88
                            Originally posted by txmarinemom View Post
                            It seems to me a lot of emphasis has been placed on the 8 individual non-operative methods as *separate* methods. Isn't it feasible that every patient in this study *could* have tried all 8 ... maybe even concurrently? I know *I* did at times throughout my pre-op career (with the exception of adult bracing).
                            Hi Pam,

                            I think, based on Linda's description, that it's a single question on a form with checkboxes. So, if you checked *anything* other then the "no treatment" box, you were in the "alternate treatment" group. I think it's likely that many patients (especially those in a lot of pain) checked more then one box.

                            Individually, that provides good information to a doctor about what their patient is trying. It's just when you jumble them all together and try to say something meaningful that you run into a problem. The example I gave above is that you could make "surgery" one of those boxes and have several patients who had completely reversed their pain with surgery, and still have an overall measurement showing that the *average* result was no improvement in pain. If you were selling pink lemonade to cure scoliosis, and someone told you they wanted to try surgery instead, you could say "Oh, no, we studied everything other then pink lemonade, including surgery, and noone got any better."

                            I happen to think that surgery *is* a good treatment for patients who are in a lot of pain. But this study in no way suggests that's it's any better then any other *specific* treatment. It only shows that it's better then the *average* of everything else. Which is really going to bum out the "Everything But Surgery for Scoliosis" Clinic.
                            Last edited by hdugger; 02-09-2010, 08:19 PM.

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                            • #89
                              Originally posted by hdugger View Post
                              I think, based on Linda's description, that it's a single question on a form with checkboxes. So, if you checked *anything* other then the "no treatment" box, you were in the "alternate treatment" group. I think it's likely that many patients (especially those in a lot of pain) checked more then one box.

                              Individually, that provides good information to a doctor about what their patient is trying. It's just when you jumble them all together and try to say something meaningful that you run into a problem.
                              Oh, I absolutely agree - and without more specificity, I don't believe the study is really even a semi-useful tool. Aside from one of the main points I already listed (no one knows what combination of alternative or "other" treatments patients tried), for how long - and under what parameters - were alt/other treatments implemented?

                              What I will say, is I doubt *many* adult patients in self-rated pain (pain enough to land them in an ortho's waiting room) have NOT tried conservative treatment.

                              And did I convey (clearly enough for understanding) the issues I have with pre-op scoliosis and the ODI questionaire?

                              Originally posted by hdugger View Post
                              I happen to think that surgery *is* a good treatment for patients who are in a lot of pain. But this study in no way suggests that's it's any better then any other *specific* treatment. It only shows that it's better then the *average* of everything else. Which is really going to bum out the "Everything But Surgery for Scoliosis" Clinic.
                              Surgery CAN be a good treatment. It was in my instance, although that doesn't make it a universal panacea. I can argue in favor of it a ~whole~ lot more when there's progression, or years of other attempts at relief have been a waste. In my mind, there's absolutely nothing that compares as a solution in a moving adult curve ...

                              ... but pain was the issue here. I tried to retain my comments to that arena.

                              Which puts us right back to what I think about this study:

                              A) It was too poorly structured (or just non-structured) to be of use,

                              B) Chronic pain patients are probably poor "self-raters", and;

                              C) I DO agree with Linda that surgeons aren't responsible for giving data on other treatment modalities: What I'm unsure of, however, is why someone felt this study was useful to publish.

                              Again, just my bubble gum change.

                              Pam
                              Fusion is NOT the end of the world.
                              AIDS Walk Houston 2008 5K @ 33 days post op!


                              41, dx'd JIS & Boston braced @ 10
                              Pre-op ±53°, Post-op < 20°
                              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                              VIEW MY X-RAYS
                              EMAIL ME

                              Comment


                              • #90
                                Originally posted by txmarinemom View Post
                                And did I convey (clearly enough for understanding) the issues I have with pre-op scoliosis and the ODI questionaire?
                                Yes, absolutely. That would be very useful feedback to the scoliosis research community. I know they love their surveys, because they're so simple to administer, but actually putting people through a few simple tests and rating their pain would allow a better classification.

                                Originally posted by txmarinemom View Post
                                C) I DO agree with Linda that surgeons aren't responsible for giving data on other treatment modalities: What I'm unsure of, however, is why someone felt this study was useful to publish.
                                Yes, exactly. It's like Randy Newman's "God Song," "Lord, if you won't take care of us, won't you please please let us be?." I suspect the reason has to do with justifying the cost of surgery - so they can say to insurers "Yes, we're expensive, but, over the years, you'll spend the same amount on these conservative therapies."

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