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  • #91
    Originally posted by flerc View Post
    Exactly, in in the right direction!. But this attempts should not to arise from some individuals as Betz. It should to be gestated from an Organization with that purpose in mind. That is what is not happening and seems that will never happen.
    Betz is one of the relative few surgeons researching nonfusion treatments that are scientific (not alternative). Except for the research types, it's all downhill from guys like Betz. There is simply nobody else out there up to the job. And the untrained have a track record to show they are not very likely to be helping. There are hell at fleecing desperate folks though.
    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


    • #92
      Originally posted by Pooka1 View Post
      Betz is one of the relative few surgeons researching nonfusion treatments that are scientific (not alternative). Except for the research types, it's all downhill from guys like Betz. There is simply nobody else out there up to the job. And the untrained have a track record to show they are not very likely to be helping. There are hell at fleecing desperate folks though.
      Well said, Sharon.

      And I wanted to point out that it's not just Dr. Betz who seems to be leaning towards better, as you say scientific, treatment methods. Just as an example, the list of surgeons who will perform VBS on patients who fit the criteria includes names like Luhmann, Skaggs, Hresko, Lonner, Vitale, Hanson, Schwend and his team at Children's Mercy in KC, etc.

      So while they may not be an official "Organization" with a title, with members like the guys listed above, this unofficial group of surgeons is good enough for me and I am very thankful for them. Without guys like this, scoliosis patients - particularly juvenile scoliosis patients - would have a very unappealing list of treatment options available to them.

      Another point I wanted to make is that yes, these guys are all surgeons, but many if not all of them will prescribe bracing in cases where they think it has some usefullness. In fact, many will tell patients that they are not candidates for a particular surgical procedure, and in some cases even recommend bracing in lieu of surgery (for example, they might recommend that a patient stick with bracing for a year or two in the case of a pre-teen with a small or moderate curve for whom bracing has held the curve. I have heard parents tell of this scenario on many occasions).
      Last edited by mariaf; 07-22-2011, 10:37 AM.
      mariaf305@yahoo.com
      Mom to David, age 17, braced June 2000 to March 2004
      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

      https://www.facebook.com/groups/ScoliosisTethering/

      http://pediatricspinefoundation.org/

      Comment


      • #93
        Maria I agree.

        There is a pervasive and deep level of misunderstanding here in my opinion about surgeons not only in how their expertise level differs from everyone else but also them as human beings. Comments like they just like operating and don't want to see better treatments developed are straight out ad hom attacks on their character.

        And the claim that thet do surgery because that is all they know can be disproven by any young child in a brace. . . don't even need a fancy arguement.

        It's like seeing a cat kill a mouse and concluding it did that because cats hate mice and completely missing the real reason which is the natural prey of cats are mice and that's where evolution got them.

        I think the pervasive misunderstandings in this thread always trace back to the same old issue of lack of scientific understanding among the masses. Some like yourself have booted themselves up and taught themselves to think rigorously but most have not. The fact is that most folks still think they live in a demon-haunted world and that type of thinking necessarily bleeds into important matters and trips them up.
        Last edited by Pooka1; 07-22-2011, 10:26 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


        • #94
          Another way to look at this. . .

          Emotion-driven perspective: "Surgeons do surgery becaue that's all they know and what they enjoy."

          Evidence-driven perspective: "Orthopedic surgery to include spinal fusion exists because that is the best option presently available for desperate folks."

          Further, the inability of folks to sort treatments into scientific versus nonscientific is a direct liability of the widespread culture of not valuing evidence over revelation. The chickens come home to roost when a serious condition presents itself and folks are completely unarmed to handle it.
          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


          • #95
            Originally posted by Pooka1 View Post

            There is a pervasive and deep level of misunderstanding here in my opinion about surgeons not only in how their expertise level differs from everyone else but also them as human beings. Comments like they just like operating and don't want to see better treatments developed are straight out ad hom attacks on their character.

            And the claim that thet do surgery because that is all they know can be disproven by any young child in a brace. . . don't even need a fancy arguement.

            It's like seeing a cat kill a mouse and concluding it did that because cats hate mice and completely missing the real reason which is the natural prey of cats are mice and that's where evolution got them.

            I think the pervasive misunderstandings in this thread always trace back to the same old issue of lack of scientific understanding among the masses. Some like yourself have booted themselves up and taught themselves to think rigorously but most have not. The fact is that most folks still think they live in a demon-haunted world and that type of thinking necessarily bleeds into important matters and trips them up.
            Sharon, I think this thread is about changes in scoliosis treatments, it was triggered by the scolioscore, but we were treating in a more general way if real changes from medical community are really happening or not, what could be expected, are changes needed or not and if are possibles or not.
            I don't know who are demonstrating bad emotions or thoughts against surgeons or don't know what they do, or have not enough idea about what science is, but I think it have not too much to do with what we are treating in this thread.
            The point here (and I think the main that should to be discussed in this forum) is if we should already have now a better solution or be so close to have it, and if in fact it would be possible, why it’s not happening.
            As I said before, I think we are in the XXI century and a better solution for the scoliosis affected folks is needed and nobody may say it's not possible, so what is happenning?

            Who may arrive to a good treatment (as Hudgger said) for us?
            As we talked before, we may say that Researchers are looking for a ‘vaccine’, but even supposing that some day may get it, before that moment and thinking in people affected by the scoliosis problem today, who may arrive to that kind of treatments? It’s really hard to imagine that, from individual attemps, at least for me.
            The medical community is the health organization of greatest magnitud, even receiving resources from goverments. Very different are Alternative associations, so much more small and separated.

            So, we must to expect that from medical community, but why is not gestating a Project to arrive to that new and good treatments? That is the problem, our problem, what could we do? If we only depends from some individual and isolated attemps and achievements as done by Betz inside the medical community or out of this community (as I know) as surgeons like Dr, Rivard (Spinecor) or other professionals as Sastre (Fed), all looks bleak and seems that we cannot expect a change for a very long time..

            So we need that medical community takes that kind of decision. Is it something really impossible? It’s seems to be if we read what Huddger said in some previous posts, for instance:

            Originally posted by hdugger
            I'm not sure what that organization would be. Non-degenerative scoliosis just doesn't affect enough people to put in on the list of diseases that nations feel they must address.

            And, although it's an expensive surgery, it's rare enough that insurers likely don't think that reducing the number of surgeries would offset the cost of research.

            Surgeons don't have any particular reason to research non-surgical treatments, or even to do anything but make the surgery safer and less onerous.

            That leaves any group who could make a bunch of money off treating it more simply and elegantly. But, simple and elegant treatments are, by definition, cheap.

            So . . . I just don't see who would be motivated enough to look into it.
            I really agree, but I think that Nations should to consider not only how many people are affected, but also how much acceptable or inacceptable is the current solution.
            It’s really so hard for me to imagine someone with the power of triggering the change we need in the medical community, and if we could not motivate him enough.
            As I said once, I don’t believe that surgeons thinking that this change is needed, but in isolation may do something.
            I think that if all surgeons of the world may awake tomorrow with the purpose of cause all together that kind of change in that community, surely that community will begin soon to do something in the right direction . Is it impossible that something like that may happen? May we not contribute in some way? are there not other possibilities? I'm not quite sure.
            Last edited by flerc; 07-24-2011, 09:43 AM.

            Comment


            • #96
              Originally posted by flerc View Post
              The point here (and I think the main that should to be discussed in this forum) is if we should already have now a better solution or be so close to have it, and if in fact it would be possible, why it’s not happening.
              Well if scoliosis is at least as complex as cancer, Type I diabetes, and any other condition that has had millions if not billions of dollars thrown at the research then the problem is probably not going to be lack of funding.

              A pervasive problem on this group is that folks don't understand how complex it is and so just assume the researchers don't really want to solve it or the medical establishment doesn't really want to lose the revenue from treating it. This is a direct liability of not being evidence driven and actually not recognizing the difference between scientific approaches (surgery and conservative methods) and non-scientific ones (raindrop therapy, vibrating chairs, modified handheld jigsaws, traction chairs, massage, etc. etc.). We even have lay folks thinking they can get to the cutting edge of biochemistry with barely high school level science and just reading a few papers. It doesn't get any more clueless than that. And we have lay folks actively disagreeing on strictly emotional grounds with the research community on settled questions like genetics. I conclude from observation that it is not possible for most lay folks to grasp certain critical concepts.

              As I said before, I think we are in the XXI century and a better solution for the scoliosis affected folks is needed and nobody may say it's not possible, so what is happening?
              Why haven't the researchers cured cancer or Type I diabetes or muscular dystrophy by now?

              If you look at the abstracts for the meetings of POSNA, SRS, etc., and articles in Spine and other journals, there is work going on in the field of scoliosis on many fronts to include etiology and various surgical and conservative treatment modalities. But of course it isn't enough because there is still no solution. Everyone with a relative with a condition would take all the money away from research on every other condition if they could and apply it to their condition. That is understandable when people are suffering but there is only so much money.

              The medical community is the health organization of greatest magnitud, even receiving resources from goverments. Very different are Alternative associations, so much more small and separated.
              Alternative treatments are largely if not completely non-scientific and are therefore worthless. They are as effective as chanting or praying.

              So, we must to expect that from medical community, but why is not gestating a Project to arrive to that new and good treatments? That is the problem, our problem, what could we do? If we only depends from some individual and isolated attemps and achievements as done by Betz inside the medical community or out of this community (as I know) as surgeons like Dr, Rivard (Spinecor) or other professionals as Sastre (Fed), all looks bleak and seems that we cannot expect a change for a very long time..
              Money.

              I really agree, but I think that Nations should to consider not only how many people are affected, but also how much acceptable or inacceptable is the current solution.
              It’s really so hard for me to imagine someone with the power of triggering the change we need in the medical community, and if we could not motivate him enough.
              As I said once, I don’t believe that surgeons thinking that this change is needed, but in isolation may do something.
              Well, scoliosis is not generally life threatening and the surgery helps so many people though it isn't a perfect solution. I think a case can be made that research dollars go towards conditions that are actually killing kids and adults. For example, childhood leukemia has been beaten back to a great extent because a lot of research dollars went into that because kids were dying. I think IS needs to be studied but if money is doled out at least in part based on how many folks are affected and how many are dying, IS will not be at the top of the list.

              I think that if all surgeons of the world may awake tomorrow with the purpose of cause all together that kind of change in that community, surely that community will begin soon to do something in the right direction . Is it impossible that something like that may happen? May we not contribute in some way? are there not other possibilities? I'm not quite sure.
              Well, I think we are talking a relatively small population within the relatively small IS population that is in dire need of new treatments. I would include IIS, JIS, lumbar, double majors and possibly very high thoracic curves in that category. So it isn't even the majority of IS cases as far as I can tell. I would hope the majority of research effort is directed at those things although so research needs to be directed at the majority of IS cases - AIS w/ thoracic only curves, just because they are likely the majority though the need is not as dire as the other cases.

              In the meantime, if Scoliscore or any other test can cut back on the unnecessary or ineffective bracing of kids then that is a very good thing even if it removes any hope of a conservative treatment for the near future. Bracing should never be done just for parents. I think this fear of having no conservative treatment is what drives the much of the ignorant resistance to Scoliscore.

              Just my opinion.
              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


              • #97
                Originally posted by Pooka1 View Post
                In the meantime, if Scoliscore or any other test can cut back on the unnecessary or ineffective bracing of kids then that is a very good thing even if it removes any hope of a conservative treatment for the near future. Bracing should never be done just for parents. I think this fear of having no conservative treatment is what drives the much of the ignorant resistance to Scoliscore.
                I think that if that's really the case AND if patiens/parents are not prevented from exploring other options, then the Scoliscore might be an option to consider. I however have some concerns about stating that it has been triggered the genetics behind such a multifactorial pathology.

                And it's not ignorant resistance but common sense brought my work experience in research on plant molecular biology (much more easier and yet sometimes quite tricky to point out clear molecular markers for certain traits)

                In addition, my humble opinion is that much of that money would probably be more profiteably spent on research on the actual physical laws behind scoliosis development (bone, muscles, discs growth and movement) to better understand and counteract.

                Anyway, I reckon all work on this is worth doing and forums like this are very useful tools of information worldwide, so thank you all guys.

                Comment


                • #98
                  Originally posted by hdugger
                  My political (not scientific sense) is that it requires some kind of organization on the patient's side to effect change, if there's no drive coming from anywhere else.

                  I don't have a ton of political know-how, but I'm happy to strategize about how patients would organize and how they'd get their concerns heard, and I'm happy to take steps to move that forward. You're right - there's really no other way.
                  Huddger, sure you may contribute so much to define the kind of organization that patients are needing. We must to be in contact, we must to think together. Without any doubt, there’s really no other way.

                  Comment


                  • #99
                    Originally posted by Pooka1 View Post
                    Well if scoliosis is at least as complex as cancer, Type I diabetes, and any other condition that has had millions if not billions of dollars thrown at the research then the problem is probably not going to be lack of funding.

                    A pervasive problem on this group is that folks don't understand how complex it is and so just assume the researchers don't really want to solve it or the medical establishment doesn't really want to lose the revenue from treating it. This is a direct liability of not being evidence driven and actually not recognizing the difference between scientific approaches (surgery and conservative methods) and non-scientific ones (raindrop therapy, vibrating chairs, modified handheld jigsaws, traction chairs, massage, etc. etc.). We even have lay folks thinking they can get to the cutting edge of biochemistry with barely high school level science and just reading a few papers. It doesn't get any more clueless than that. And we have lay folks actively disagreeing on strictly emotional grounds with the research community on settled questions like genetics. I conclude from observation that it is not possible for most lay folks to grasp certain critical concepts.



                    Why haven't the researchers cured cancer or Type I diabetes or muscular dystrophy by now?

                    If you look at the abstracts for the meetings of POSNA, SRS, etc., and articles in Spine and other journals, there is work going on in the field of scoliosis on many fronts to include etiology and various surgical and conservative treatment modalities. But of course it isn't enough because there is still no solution. Everyone with a relative with a condition would take all the money away from research on every other condition if they could and apply it to their condition. That is understandable when people are suffering but there is only so much money.



                    Alternative treatments are largely if not completely non-scientific and are therefore worthless. They are as effective as chanting or praying.



                    Money.



                    Well, scoliosis is not generally life threatening and the surgery helps so many people though it isn't a perfect solution. I think a case can be made that research dollars go towards conditions that are actually killing kids and adults. For example, childhood leukemia has been beaten back to a great extent because a lot of research dollars went into that because kids were dying. I think IS needs to be studied but if money is doled out at least in part based on how many folks are affected and how many are dying, IS will not be at the top of the list.



                    Well, I think we are talking a relatively small population within the relatively small IS population that is in dire need of new treatments. I would include IIS, JIS, lumbar, double majors and possibly very high thoracic curves in that category. So it isn't even the majority of IS cases as far as I can tell. I would hope the majority of research effort is directed at those things although so research needs to be directed at the majority of IS cases - AIS w/ thoracic only curves, just because they are likely the majority though the need is not as dire as the other cases.

                    In the meantime, if Scoliscore or any other test can cut back on the unnecessary or ineffective bracing of kids then that is a very good thing even if it removes any hope of a conservative treatment for the near future. Bracing should never be done just for parents. I think this fear of having no conservative treatment is what drives the much of the ignorant resistance to Scoliscore.

                    Just my opinion.

                    Thinking that a change is needed and possible, of course not imply a lack of understanding about what science is, or how much complex scoliosis is or the believe that the problem of the lack of a good solution is reduced only to bad people and economic interests. As scoliosis, it also seems to be a complex problem.. and multicausal.

                    If medical community only wants to arrive to the kind of solution as they are looking, for a pathology as scoliosis is, yes it may be so difficult as diseases as cancer or even much more. May be that much money don’t lead in that way to that solution. So it’s not a matter of money. Of course is a very much important resource also for a Project trying to arrive to other kind of satisfactory solution, taking Problem Solving concepts in mind, such as the definition of the relevant facts, related with the current causes, something like tata said. And surely as she said, the money spent in that kind of researches, only manged according a rational strategic plan, would be more profitably spent

                    We need that kind of Project working soon. It’s possible a Project like that and depends on us that people with enough power takes the decision of do it

                    Comment


                    • Originally posted by flerc View Post
                      If medical community only wants to arrive to the kind of solution as they are looking, for a pathology as scoliosis is, yes it may be so difficult as diseases as cancer or even much more.
                      What do you mean by this?

                      The medical community is looking for SCIENTIFIC solutions to scoliosis etiology and treatment. Those are the only solutions that will ever make a difference. At the other end of the spectrum we have folks going into their basement and building vibrating chairs or pulley devices or modifying handheld jigsaws and not expecting to gather evidence of efficacy before charging innocent unsuspecting desperate people.

                      I think the main problem is that folks can't see the difference between scientific and nonscientific approaches and then conclude the researchers aren't moving fast enough. Research is HARD. Most published research results are false because of this and despite the best honest efforts on the part of the researchers.

                      Researchers are constrained by science and ethics and most of all intellectual honesty. Alternative treatment inventors are not. That's the nutshell difference.

                      While it is appropriate to have hope, it is probably not realistic to think all biological problems can be solved perfectly any time soon. The complexity is very great. We have about 5 billion years before another galaxy slams into our own. Also, the sun will explode in about 5 billion years. So five billion years max is the time frame we are working with. Whichever event happens first, there is no guarantee we can solve everything by then unfortunately. In the meantime, the more folks who try to understand the difference between science and nonscience will help. Folks can try to improve.
                      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


                      • Originally posted by Pooka1 View Post
                        I think the main problem is that folks can't see the difference between scientific and nonscientific approaches and then conclude the researchers aren't moving fast enough. Research is HARD. Most published research results are false because of this and despite the best honest efforts on the part of the researchers.
                        What are doing this people to make feel researchers that kind of pressure? I have never heard nothing like that. In what country is that happening? Of course people, with a big problem wants a satisfactoy solution (something as ‘good solution’ as Huddger said). That wish is the pressure or they really are doing something? I only know about much people of course so much dissatisfied, and of course, nothing of that lack of understanding may be say at least about much of them. In fact nonconformity is directly proportional to knowledge and expertise over sciences.

                        Originally posted by Pooka1 View Post
                        Researchers are constrained by science and ethics and most of all intellectual honesty. Alternative treatment inventors are not. That's the nutshell difference.
                        I have said before what I think about that kind of arguments about that people belonging to some kind of community (determined by some specific job or knowledge) are better ( honest, altruistic..) than other.. I prefer, to not refer to that point.

                        Originally posted by Pooka1 View Post
                        While it is appropriate to have hope, it is probably not realistic to think all biological problems can be solved perfectly any time soon. The complexity is very great. We have about 5 billion years before another galaxy slams into our own. Also, the sun will explode in about 5 billion years. So five billion years max is the time frame we are working with. Whichever event happens first, there is no guarantee we can solve everything by then unfortunately.
                        The same kind of argument may be used to justify many situations, but I may agree that may be a justification about why medical community did not find yet the vaccine for the scoliosis. That is the only ‘good solution’ they are trying. Maybe that all diseases as cancer would be solved before. As we talked before, extremly few guys are trying another non fusion solution inside that community as they should.

                        Originally posted by Pooka1 View Post
                        The medical community is looking for SCIENTIFIC solutions to scoliosis etiology and treatment. Those are the only solutions that will ever make a difference. At the other end of the spectrum we have folks going into their basement and building vibrating chairs or pulley devices or modifying handheld jigsaws and not expecting to gather evidence of efficacy before charging innocent unsuspecting desperate people.
                        I don't know in fact if vibrating chairs are not based, as other good alternative methods, over a reasonable theory taking into account scientist facts. I suppose you are refering to CLEAR. May you copy a link to the other methods?
                        Anyway we are talking about medical community. We may agree that a necessary condition for a good solution is to be scientific, but is not enough. If the strategy is not according the requirements and could not respect the restrictions, or the relevant facts are not known or the current causes are ignored or even the problem to be solved is not defined in a right way, it’s so probably that a satisfactory solution would never be achieved.

                        Comment


                        • Fer,

                          I think we have discussed all the points already. I have nothing more to add.

                          Gracias,
                          Sharon
                          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


                          • Yes Sharon, as I have said in many points of the lasts posts, we have already discussed them.
                            I am really always pleased to talk to you.

                            Un abrazo

                            Fer

                            Comment


                            • Originally posted by hdugger
                              Flerc,

                              I don't have a ton of political know-how, but I'm happy to strategize about how patients would organize and how they'd get their concerns heard, and I'm happy to take steps to move that forward. You're right - there's really no other way.
                              Huddger, which do you think would be the first step to make ourselves heard?

                              Comment


                              • Flerc, Hudgher, this is a great initiative and I certainly would like to take part in it.

                                I live in Spain and am trying myself to gather info from European specialists. I could contribute with my findings in this respect. That could give us a wider overall picture.

                                Next month, I'll have my one-year follow-up with my surgeon, Dr. César Hernández. He's a well reputed spine surgeon in Spain and member of Eurospine. I'll try to persuade him to take part here or to answer our questions from time to time. He's terribly busy but I'll do my best to convince him!

                                I'd also add some questions to the list regarding the follow-up of scoliosis fused patients with the different techniques used up to now. What expectatives they (we) have as time goes by and how can the (we) improve them by doing what.

                                Comment

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