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  • #16
    Originally posted by Back-out View Post
    To claim we are making informed decisions in any sense of the word, is inaccurate. We are making a leap of Faith!
    That is true but to a less extent that you think.

    Modern surgical instrumentation and techniques don't come out of the blue. They are simply the nth iteration to try to fix all observed problems with previous instrumentation. They represent answers or potential answers to the problems seen with the earlier instruments. There is probably no end to the tweaking. So the honest question is... are they still all better than no surgery? That answer will converge for many people based on what is known now. For some, surgeons will disagree. Surgery is too risky for some folks but not the great majority it seems.

    Surgeons and researchers are the only ones honestly putting their data out there. That's because nobody else has any data, in some cases after decades. That right there is your leap of faith. It is disingenuous to attack the only game in town when we have bunnies who need help.

    Science, more than just a good idea.
    Last edited by Pooka1; 06-11-2010, 02:37 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


    • #17
      For those of you who claim this is "garbage", I would like to know your reasoning. It is what it is in the sense that it is a compilation of facts. Yes, they may be older, but the "new" instrumentation as far as I know has only existed for about 10 years. That's not much time to get new statistics on long-term outcomes. I didn't post this article because I was trying to scare anyone away from surgery. I came across it randomly doing some research for myself and it made me THINK about what I am considering. So you can call it garbage if you like. I found it to be a helpful reminder of the seriousness of this particular kind of surgery. It's not per say a study, it's just a compilation of statistics already out there. So go ahead and tear it apart. I really don't care. I didn't write it. Calling it garbage isn't going to change the stats. I found some benefit for the simple fact that it made me sit back and think. Maybe someone else will do the same. If not, that's just fine.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #18
        Originally posted by rohrer01 View Post
        For those of you who claim this is "garbage", I would like to know your reasoning. It is what it is in the sense that it is a compilation of facts. Yes, they may be older, but the "new" instrumentation as far as I know has only existed for about 10 years. That's not much time to get new statistics on long-term outcomes. I didn't post this article because I was trying to scare anyone away from surgery. I came across it randomly doing some research for myself and it made me THINK about what I am considering. So you can call it garbage if you like. I found it to be a helpful reminder of the seriousness of this particular kind of surgery. It's not per say a study, it's just a compilation of statistics already out there. So go ahead and tear it apart. I really don't care. I didn't write it. Calling it garbage isn't going to change the stats. I found some benefit for the simple fact that it made me sit back and think. Maybe someone else will do the same. If not, that's just fine.
        There very well might be known or unknown complications with the latest implants. That doesn't change the fact that some of us would do anything to get out of pain. I got 8-10 pain free years out of my first implants. It was definitely worthwhile. If I get 8-10 out of my next implants, I would still consider it worthwhile. We all take in all the information we get, and we make a decision based on that information. I'm not sure why everyone feels the need to try to campain for their choice of treatment. I'm not trying to convince you to have surgery. Why are you trying to convince me to not have surgery?
        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

        Comment


        • #19
          Originally posted by LindaRacine View Post
          There very well might be known or unknown complications with the latest implants. That doesn't change the fact that some of us would do anything to get out of pain. I got 8-10 pain free years out of my first implants. It was definitely worthwhile. If I get 8-10 out of my next implants, I would still consider it worthwhile. We all take in all the information we get, and we make a decision based on that information. I'm not sure why everyone feels the need to try to campain for their choice of treatment. I'm not trying to convince you to have surgery. Why are you trying to convince me to not have surgery?
          People who attack surgery are either not aware or are denying that it is simply the only option for certain patients.

          Now it may not be the only option for a given patient but that cleary doesn't negate that it is the only option for other patients.

          Weiss is said to be an orthopedic surgeon who no longer operates. It would be interesting to know the real reason why he doesn't operate any more. His grandmother invented Schroth and that could be a reason to throw in with the conservative folks. But then why get the orthopedic credential? I am wondering if it is the same reason that evolution deniers get legitimate science degrees - to gain credibility to push factually incorrect positions.

          Weiss needs to publish the 90+ years of Schroth data before he bellyaches one more time about surgery. He is clearly engaged in "Look at the Wookie" tactics to distract attention from the vacuum of efficacy evidence for PT and bracing.

          I don't think saying modern use instrumentation hasn't been around long enough to know the long-term should be publishable. It is a penetrating glimpse into the obvious. You can get that from your surgeon; nobody should need a journal article.

          And going over historical instrumentation outcomes does have value for people with that instrumentation but the papers should clearly say it is historical instrumentation NOT used today in the title, introduction, methods, results, and discussion sections. Weiss fails to do that so it ends up misleading the poor bunnies.
          Last edited by Pooka1; 06-11-2010, 10:44 AM.
          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


          • #20
            Originally posted by LindaRacine View Post
            There very well might be known or unknown complications with the latest implants. That doesn't change the fact that some of us would do anything to get out of pain. I got 8-10 pain free years out of my first implants. It was definitely worthwhile. If I get 8-10 out of my next implants, I would still consider it worthwhile. We all take in all the information we get, and we make a decision based on that information. I'm not sure why everyone feels the need to try to campain for their choice of treatment. I'm not trying to convince you to have surgery. Why are you trying to convince me to not have surgery?
            I don't see anything in rohrer's post that in any way suggested "convincing other people not to have surgery."

            Comment


            • #21
              I have perused this article a couple times within the last year or two. Of particular interest to me now is the statement: “Inflammatory responses to metallic instrumentation can occur independently or in conjunction with infections.” I had a very painful episode a couple weeks ago that landed me in my surgeon’s office. This was the first time since my surgery that I had to contact my surgeon about anything. I was in so much pain over a three-day period that I could not sleep, eat or go to work. When I contacted my surgeon’s nurse and explained my symptoms, I was prescribed an anti-inflammatory and asked to come in. A friend took me as I was in too much pain to drive myself. An x-ray revealed a solid fusion and all instrumentation intact. While that was a relief, I’m curious to know what triggered this pain. I took the anti-inflammatory over a few days and I’m fine now but I am wondering if I could be developing an allergy to the metal. Guess only time will tell.

              Comment


              • #22
                Originally posted by LindaRacine View Post
                Total garbage. The studies go back to 1950. The surgery that is being done today has very little in common with surgeries between 1950 and 1990.
                They looked back to 1950 for studies, but of the 48 studies actually meeting their criteria and thus included in the summary, only 4 were published before 2000.

                Comment


                • #23
                  Originally posted by CHRIS WBS View Post
                  I have perused this article a couple times within the last year or two. Of particular interest to me now is the statement: “Inflammatory responses to metallic instrumentation can occur independently or in conjunction with infections.”...I am wondering if I could be developing an allergy to the metal. Guess only time will tell.
                  Since this is a source of anxiety to you, Chris, maybe it's worth consulting an allergist for tests. They should be able to inject some small amount of whatever substances are relevant, in the usual back test (here referring to where they pop the skin with the potential allergen to look for response).

                  It would be such a load off your mind to find it's not an issue and even if it is, maybe desensitization could relieve the problem. As I understand it, there is a difference between sensitivity and a true allergy, anyhow. I'm a great believer in reality testing. Why worry when it may be nothing?
                  Not all diagnosed (still having tests and consults) but so far:
                  Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                  main curve L Cobb 60, compensating T curve ~ 30
                  Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                  Comment


                  • #24
                    Originally posted by LindaRacine View Post
                    There very well might be known or unknown complications with the latest implants. That doesn't change the fact that some of us would do anything to get out of pain. I got 8-10 pain free years out of my first implants. It was definitely worthwhile. If I get 8-10 out of my next implants, I would still consider it worthwhile. We all take in all the information we get, and we make a decision based on that information. I'm not sure why everyone feels the need to try to campain for their choice of treatment. I'm not trying to convince you to have surgery. Why are you trying to convince me to not have surgery?
                    I'm not trying to convince ANYONE not to have surgery. I'm leaning toward having surgery myself. I'm also not campaigning for anything. This is just some information I came across that I thought might be useful for some in their decision making process. It made me sit back and take a look at risk benefit for myself. Like I said, I'm still leaning toward surgery as I'm sick and tired of being in pain.

                    I apologize if I frightened anyone. That was not my intent.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • #25
                      Originally posted by LindaRacine View Post
                      There very well might be known or unknown complications with the latest implants. That doesn't change the fact that some of us would do anything to get out of pain. I got 8-10 pain free years out of my first implants. It was definitely worthwhile. If I get 8-10 out of my next implants, I would still consider it worthwhile.
                      I quite agree. As far as I know (all too little) this is a great summary of the kind of outcome we can realistically hope for, on average, depending on demographic and surgeon. Better - worse, all depends.

                      Professionals, please tell us, WHAT it depends on, so we can best decide, under advisement! Data needs to be coordinated and made available to all.

                      And FWIW having a vested interested in alternate therapies doesn't necessarily disqualify a study though, yes, it should be disclosed. Why assume that those dissenting or cautionary voices have another motive besides the belief that - based on the evidence - patients are not treated with enough respect in the decision making process? They shouldn't be dismissed out of hand as merely motivated by self-seeking gain. It's circular. Why isn't their choice of a livelihood as much a function of their conscientious reading of the situation? If more information were available from within the profession, though, we wouldn't need to look elsewhere.
                      Not all diagnosed (still having tests and consults) but so far:
                      Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                      main curve L Cobb 60, compensating T curve ~ 30
                      Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                      Comment


                      • #26
                        We all take in all the information we get, and we make a decision based on that information. I'm not sure why everyone feels the need to try to campain for their choice of treatment. I'm not trying to convince you to have surgery. Why are you trying to convince me to not have surgery?
                        Right - first part. I don't think ANYONE here is "campaigning" for their treatment choice, much less against surgery.

                        Personally, I'm campaigning in favor of more information - and not only for the patients, but for other non-surgeon physicians. FYI my internist is very down on the op, which is very upsetting to me. He urges me towards great caution, based on his information sources. I guess the surgery has a bad rep in the broader trade. Several of my docs have taken that tack.

                        I don't think the choice should be quite so "Darwinian" - money, smarts, education, who you know - should so much determine outcomes, insofar as surgical choice is a factor. I feel very bad for the (spinally) deformed people who are out of the loop and end up with inferior surgeons OR no surgery at all, because they don't have the wherewithal to pursue relief. Likewise, I feel for those who may approach the surgery a bit too cavalierly, because it is not presented with appropriate gravity (NOT an issue on this site!).

                        I hope very much meta-analyses will soon be available to both the affected public and their personal physicians. Complex spinal surgery, as intrinsically iffy as it is, has had outcomes obscured far more than necessary. I can't think of any other area of medicine where it is this difficult to find broad statistics about outcomes, to help in decision-making. Not CA or cardiac, nor even in rare diseases. It should NOT be this way. "My article" points out that only in the last few years have SRS surgeons even been REQUIRED to report pt. deaths.

                        This is just plain wrong. Everyone is entitled to make decisions based on available information. The fact that we are desperate is just one more reason why we shouldn't have to do so much detective work and second-guessing.

                        The information should not be proprietary. If there were a will, there would be a way. There are many reasons for this lack of summary information (physician privacy among them), but if the patients' right to know factored more heavily, data collection and analysis would be accomplished and published with relative ease. It WILL require a mandate, and a sea change regarding patients' ability to process complex material - with the help of their primary! Comparative surgeon and facility stats should also be available for both primary surgery and revision (THIS is the hardest nut to crack! )

                        Again, I have great hopes that Lawrence Lenke will change this picture radically. Then, surgical candidates won't even be able to imagine this degree of ignorance being regarded as acceptable much less, the norm. Cancer patients would rebel if they were forced to choose an oncologist and treatment protocol based largely on trust and bedside manner, instead of hard facts about how different treatments have worked with their disease - with the grade it was discovered and their type of malignancy.
                        Last edited by Back-out; 06-11-2010, 03:19 PM.
                        Not all diagnosed (still having tests and consults) but so far:
                        Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                        main curve L Cobb 60, compensating T curve ~ 30
                        Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                        Comment


                        • #27
                          Originally posted by txmarinemom View Post
                          Thank you, Linda. I decided to sit on it for a day ... and your assessment is still more gentle.

                          You just can't lump all those studies in together, rohrer. It *isn't* what it is.
                          I didn't lump those studies together. The publishers of the article did. I just posted it.
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • #28
                            Originally posted by Back-out View Post
                            Again, I have great hopes that Lawrence Lenke will change this picture radically. Then, surgical candidates won't even be able to imagine this degree of ignorance being regarded as acceptable much less, the norm. Cancer patients would rebel if they were forced to choose an oncologist and treatment protocol based largely on trust and bedside manner, instead of hard facts about how different treatments have worked with their disease - with the grade it was discovered and their type of malignancy.
                            I'm not sure you can make this kind of comparison. Cancer treatment can be measured in a way that spinal surgery simply cannot. That's clearly true of chemotherapy, which can be precisely reported as to medicines/amounts/dates, etc. And it's largely true even of surgical procedures, where they can get a pretty good sense whether or not they've removed the mass of a tumor.

                            But . . . orthopedic surgeons are still struggling to figure out exactly how to precisely describe their procedure and measure immediate post-op success. "Fusing the spine" means completely different things, based on the surgeon, patient, tools, exact size and location of curve, etc. Measuring success after surgery, how do you know if you've fused the correct number of vertebrae? How do you know if the sagittal balance is correct? None of those things are immediately measurable immediately after surgery. You only know if it's really right many months or even years down the road.

                            Additionally, what exactly are the measures of success? Cancer really has only two: are you still alive, and have you had another occurrence of cancer.

                            What would be the equivalent, clear measures for a scoliosis patient? Neither the surgery or the disorder is likely to kill them, and it would just be a judgement call when you measured an "occurrence" after the original surgery. Is an occurrence the onset of pain? Is it some additional curving? How much? Is it the need for revision surgery.

                            I don't mean to let orthopedic surgeons off the hook - their literature is a real mess. But, they're also dealing with a very messy area for which crystal clear measures simply don't seem to be available.

                            Comment


                            • #29
                              Originally posted by hdugger View Post
                              I'm not sure you can make this kind of comparison. Cancer treatment can be measured in a way that spinal surgery simply cannot. That's clearly true of chemotherapy, which can be precisely reported as to medicines/amounts/dates, etc. And it's largely true even of surgical procedures, where they can get a pretty good sense whether or not they've removed the mass of a tumor.
                              It's true that chemotherapy and radiation have easier scriptors than spinal surgery. However, there is little more measurable than the architecture of scoliosis! We have specific angles for the lateral and sagittal curvature as well as degrees (grades?) of kyphosis, spondylosthesis , and other degenerative conditions.

                              Patients could be described and grouped medically by these factors as well as age, fusion length, and the location of their their primary curve (e.g. mine, being lumbar, seems harder to deal with especially with DDD)

                              Likewise, degree of correction achieved, degree of correction maintained and complications, could all be quantified and described by category and severity. Also, was the problem corrected non-surgically, was repeat surgery necessary, if so, after what interval? Surgical mortality and estimated contribution to later mortality could all be factored in, along with ratings for quality of life improvement. (There's a disability scale and I'm sure there are others).
                              Last edited by Back-out; 06-11-2010, 11:09 PM.
                              Not all diagnosed (still having tests and consults) but so far:
                              Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                              main curve L Cobb 60, compensating T curve ~ 30
                              Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                              Comment


                              • #30
                                "Fusing the spine" means completely different things, based on the surgeon, patient, tools, exact size and location of curve, etc. Measuring success after surgery, how do you know if you've fused the correct number of vertebrae? How do you know if the sagittal balance is correct? None of those things are immediately measurable immediately after surgery. You only know if it's really right many months or even years down the road.
                                True. And that's exactly what we need to know! As for sagittal balance, I think that's eminently quantifiable. Two pts on this site had a poor outcome there - one underwent successful revision; one is contemplating it. Both knew soon after their first op. I want to avoid their surgeons, especially it they're repeat offenders! Having flatback, I am looking for a surgeon with a good track record on lordosis creation - likewise, good at degenerative disease.
                                Not all diagnosed (still having tests and consults) but so far:
                                Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                                main curve L Cobb 60, compensating T curve ~ 30
                                Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                                Comment

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