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  • Originally posted by hdugger
    Never sure where to post on this topic, but this, from the people who are actually identifying genes linked to scoliosis, may shed some light on the "scoliosis is genetic" discussion:

    "The most common form of scoliosis is idiopathic, meaning there is no known cause. Despite some popular beliefs, scoliosis does not result from carrying heavy items, athletic activity, sleeping/standing postures, or minor lower limb length discrepancies. Researchers at TSRHC identified the first gene – CHD7 – associated with idiopathic scoliosis. They hope the discovery will one day lead to identifying the cause of the spinal curvature."

    In summary, again from the people at TSRH credited with discovering the first gene linked to scoliosis, even though genes are being identified, the cause of scoliosis is unknown. That is - the genes are being used in order to help researchers identify the cause, and not as an end in themselves, and the disorder remains idiopathic.
    Thank you for breathing some new life into this discussion. I also noticed that there was some new research surfacing on the gene front. Here is the article I had found and a really intriguing quote...

    "For the top two genes, we noticed right away that they participated in nerve growth," says Dr. Wise. "These genes tell the nerves in the spinal cord how to grow — whether they should grow up or down, left or right. There are very complex mechanisms that tell the nerves how to do that, and these genes participate in that process."
    http://beckersorthopedicandspine.com...the-connection
    1993, Age 13, 53* Right T Curve w/ Left L compensatory
    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

    http://livingtwisted.wordpress.com/

    Comment


    • Originally posted by hdugger
      On the SpineCor brace, my understanding was that it had shown promise for holding/reversing curves in juvenile scoliosis and in lessening pain in adults. I know that juvenile scoliosis is a more difficult disorder to study, since it sometimes reverses on its own, but since VBS is mostly studied in the same population, I assume that results in that population aren't completely discarded.

      If it's being suggested that two Canadian doctors are committing outright fraud, I would certainly like to see some hard evidence that that was so before we casually slander professionals. I do wonder that the demand that everyone assume good of all doctors never seems to extend to those surgeons who investigate alternative treatments
      I hope it would not be true, althought some people seems to has not any kind of limits to achieve their purposes.

      Originally posted by hdugger
      I do hold out hope that medicine will evolve beyond surgery, and that something that actually treats the underlying condition will be found.
      Yes, this is the rational hope we have. but unfortunately much factors as much as you mentioned in this thread, converge against that possibility .. but all of us would achieve a BIG CHANGE in this complicated scenario if we want!

      Comment


      • Originally posted by flerc View Post
        I hope it would not be true, although some people seems to has not any kind of limits to achieve their purposes.
        People (except Dr. McIntire and Linda) here on this forum actually have no legitimate purpose other than to support other patients and parents. The research section should be closed because it is stem to stem nonsense other than Dr. McIntire's posts and the posts cautioning about lay people not understanding complex biochemistry.

        The problem comes in when lay folks attempt to get their arms around a complex biochemical problem without having the appropriate training. This problem is compounded with the easy access to research articles wherein they have no training to vet them. The results range from the misguided to the comical.

        Nobody here (except Dr. McIntire perhaps) is likely going to solve anything about etiology or treatment of scoliosis. We are bunnies, many of whom don't know what they don't know.
        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


        • Well I enjoy the sharing and discussing of information. Of course, I treat it like anything else I read on the internet, take it all with a grain of salt, and always consider the source. But I am excited to see what else develops over the next several years...

          These findings won't change scoliosis detection or treatment in the near future, but over the next five years it will change how the disorder is monitored. Depending on what researchers are able to glean from the data during that time, they could develop new ways to monitor nerve development associated with scoliosis. "We don't know the exact implications of our findings at this point, but this is certainly an area we are investigating," says Dr. Wise.

          The next several years will likely spur a plethora of discoveries in genetic research as it pertains to scoliosis. Technology and data input capabilities have developed to the point where researchers can potentially identify all genes that are relevant to the disease. The potential findings from this research could mean positive changes for treating a disease that currently takes a great deal of time and costs billions of healthcare dollars each year — not to mention the traumatic nature of invasive surgery for patients who don't respond to conservative management (observation or bracing).
          And Flerc, it seems you are getting your wish...

          "The new technologies emerging on the horizon are bringing people together," says Dr. Wise. "We are in the process of developing a scoliosis genetic research group, which is now formalizing meetings. We are hoping we can come together and produce some really large scale research on genetics in scoliosis. It's very important to share the knowledge and grow the knowledge we have together."

          Dr. Wise is among the leaders who are spearheading the efforts to create a genetic scoliosis research group. She anticipates this group will help to stimulate international collaboration between researchers in countries such as China, the U.S., France, the United Kingdom and Russia, among others.
          1993, Age 13, 53* Right T Curve w/ Left L compensatory
          2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

          http://livingtwisted.wordpress.com/

          Comment


          • Originally posted by Pooka1 View Post
            People (except Dr. McIntire and Linda) here on this forum actually have no legitimate purpose other than to support other patients and parents. The research section should be closed because it is stem to stem nonsense other than Dr. McIntire's posts and the posts cautioning about lay people not understanding complex biochemistry.

            The problem comes in when lay folks attempt to get their arms around a complex biochemical problem without having the appropriate training. This problem is compounded with the easy access to research articles wherein they have no training to vet them. The results range from the misguided to the comical.
            In fact, the problem in this forum has nothing to do with what you are saying. The problem is that you and others try to silence people thinking against what you are touting. I know really many people thinking as Hudgger, Aterry or me or others here, that refuse to be member of this forum because they hate the aggressiveness that may be breath in it and know that the only way to say what they believe and know is enduring that agressions. Your attemp to silent us would not be enough closing this section. You should to close also the non surgical sections and forbidden to talk against what you are touting. At least it would be a more honest action. honest But if you are so sure of what you are saying, you may do something much better. Just suppose for a moment. that not only people thinking as you may be clever and knowledgeable about science and give us the biochemistry demostration about what you toutle.

            I may agree that much claims were said here in the range from the misguided to the comical but if you are saying that it was said by me or other members thinking different as you think, you should not to be so vague and use the Quote buttom and justify what you say as I asked for you many times before.

            Originally posted by Pooka1 View Post
            Nobody here (except Dr. McIntire perhaps) is likely going to solve anything about etiology or treatment of scoliosis.
            Of course, but we may promote a change that lead so many others with enough knowledge and capabilities to works all together and do it.
            Last edited by flerc; 09-04-2011, 01:47 PM.

            Comment


            • Scoliosis is a complex problem...and yes, it’s cure will only be solved by researchers.

              I have seen the extensive material that my God daughter has absorbed in the last couple of years in Medical school, and I must say that her grades on the United States Medical Licensing Exam, are outstanding! This test is taken by all medical students, about 19,000 this year, and she is way up there on the food chain! This test determines the future direction a medical student can take, and of course, with high grades on this score, her future is bright. She can specialize. It will be in pediatrics. I have to brag, because after paying her tuition and buying books, I’m going broke and have something to show for it.

              She studies about 18 hours per day....subjects are given, and many books are purchased. The students each buy a few books each,(not the same) and between a half dozen or so that study together, they might cover approx 12 text books on any particular subject. There is no way that anyone that doesn’t have the pre-requisite training can possibly understand some of this stuff. I’ve tried, and failed. I make no bones about it.

              We have a research section here for the un-trained. That’s fine. Its not something that any professional would consider, other than maybe answering a few questions for us. We have to thank Linda and Dr Intire for doing this for us, its appreciated. As far as finding cures, we can only hope that tenacity will prevail, clues will be found, and the puzzles can be put together.

              Subjects covered on the exam
              Behavioral Sciences
              Biochemistry
              Genetics
              Gross Anatomy & Embryology
              Histology & Cell Biology
              Microbiology & Immunology
              Nutrition
              Pathology
              Pharmacology
              Physiology
              Cardiovascular System
              Gastrointestinal System
              General Principals of Health & Disease
              Hematopoietic & Lymphoreticular Systems
              Immune System
              Musculoskeletal Skin & Connective Tissue
              Nervous System/Special Senses
              Renal/Uninary System
              Reproductive & Endoctrine systems
              Respiratory System

              Piece of cake.....
              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • Ti Ed,

                Thank you for that grounding in reality. And that is just the subject list. A main take-home point from my one 500 level biochem class is that it only gets more complex from there. Folks get doctorates just in tiny little wedges of the large field of biochemistry. It takes years to get to the cutting edge and to even hope to push a little on the edge of the envelope. (I'm going for the record on trite phrases!)

                Folks don't know what they don't know.

                Folks can't have perspective if they don't have perspective.

                It's a tough nut to rack and bitter pill to swallow when you think you are obliged to bone up on the subject just to be a good parent for example. But you can't get blood from a stone and folks should relax a bit and be kinder to themselves.

                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


                • Originally posted by titaniumed View Post
                  I have seen the extensive material that my God daughter has absorbed in the last couple of years in Medical school, and I must say that her grades on the United States Medical Licensing Exam, are outstanding! This test is taken by all medical students, about 19,000 this year, and she is way up there on the food chain! This test determines the future direction a medical student can take, and of course, with high grades on this score, her future is bright. She can specialize. It will be in pediatrics. I have to brag, because after paying her tuition and buying books, I’m going broke and have something to show for it.
                  Congratulations to her for her hard work!

                  And kudos to you for enabling such a promising med student. Huge good deed on your part.
                  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


                  • Thanks

                    Not only did I recover from an extensive A/P, but she was coming over to Uncle Ed’s looking for financial assistance often and it usually wasn’t cheap. I’m lucky I’m still alive.....

                    She told me that in medical school they have to be prepared for contributing to at least one death in their lifetime as a doctor. That’s a heavy burden for someone that is truly dedicated. To have something go wrong is devastating, especially when you commit to a lifetime of learning and teaching the art of medicine.

                    She has a degree in biochemistry and she really didn’t struggle at all with that. It was entering medical school that really made her go to work. Suddenly things became quite serious......I would say that she has absorbed 90% of about 50 medical text books and will keep going. She also knows that her research will never stop. I told her years ago to expect this. She has competition with her class, and she doesn’t like 2nd place. Plenty of future female doctors I must say, and some pretty hot ones!

                    I hope we didn’t push her too hard growing up.
                    Ed
                    49 yr old male, now 63, the new 64...
                    Pre surgery curves T70,L70
                    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                    Dr Brett Menmuir St Marys Hospital Reno,Nevada

                    Bending and twisting pics after full fusion
                    http://www.scoliosis.org/forum/showt...on.&highlight=

                    My x-rays
                    http://www.scoliosis.org/forum/attac...2&d=1228779214

                    http://www.scoliosis.org/forum/attac...3&d=1228779258

                    Comment


                    • Ed, is good to know about you again and specially so good news about your daughter. You must to feel really so proud!
                      Best regards for both.

                      Comment


                      • Originally posted by titaniumed View Post
                        As far as finding cures, we can only hope that tenacity will prevail, clues will be found, and the puzzles can be put together.

                        Subjects covered on the exam
                        Behavioral Sciences
                        Biochemistry
                        Genetics
                        Gross Anatomy & Embryology
                        Histology & Cell Biology
                        Microbiology & Immunology
                        Nutrition
                        Pathology
                        Pharmacology
                        Physiology
                        Cardiovascular System
                        Gastrointestinal System
                        General Principals of Health & Disease
                        Hematopoietic & Lymphoreticular Systems
                        Immune System
                        Musculoskeletal Skin & Connective Tissue
                        Nervous System/Special Senses
                        Renal/Uninary System
                        Reproductive & Endoctrine systems
                        Respiratory System
                        Exactly! Is like a puzzle, it’s imposible to achieve a solution for a problem like this being focused in only one knowledge area, but folks cannot understand it. The lack of knowledge of science and Problem Solving and training in logic and Maths, lead them to believe blindly in some dogmas touting by other people. We must to feel compassion for them. Of course they are not able to realize that a Multidisiplinary Proyect is needed and not only isolated researches focuesd only in ...
                        NO, of course it’s not my style!!. I would never talk in a vague way, not saying who are ‘folks’ YO VOY DE FRENTE but..

                        Originally posted by Pooka1 View Post
                        Ti Ed,

                        Thank you for that grounding in reality..


                        Folks don't know what they don't know.

                        Folks can't have perspective if they don't have perspective.

                        It's a tough nut to rack and bitter pill to swallow when you think you are obliged to bone up on the subject just to be a good parent for example. But you can't get blood from a stone and folks should relax a bit and be kinder to themselves.
                        Is your style. It would have not any sense I asked for you again to stop to do that instead of identifying the members from whom you are talking by quoting what is leading to you to say what you say as I am doing now.
                        Of course as I said a time before I leave this forum for a while, I may use all this kinds of resources to win a discussion if I want, but nothing may seems more ridiculous that doing that in a forum like this. As verbal agressions in their multiple forms (irony, dismissives, low blows..) are the kind of resources used by at least some politicals in the world and of course we may understand them. In some contexts may be the only way to achieve what they want, but other people using that resources in other contexts.. I think that specially talk in a vague way as you are doing is a cowardly attitude or may be also the outcome of the desperate to win a discussion in any way, because the lack of other resources as logic arguments.

                        Just my opinion.

                        Comment


                        • Originally posted by titaniumed View Post
                          Scoliosis is a complex problem...and yes, it’s cure will only be solved by researchers.
                          Researches are necessary but not sufficient to solve a problem; the first step to do it is to have the intention to solve it and medical community has only shown the intention to prevent this pathology in the future, that is, not to decrease the injury that this problem is provoking in much people today in the world, except using the same discovery of exactly one century ago as fusion is and improvement the surgery techniques using it.

                          Even not seems to be much interest to improve the quality of life of people treated with the only one solution achieved by this community in the last century. (brace date from 5 centuries ago). Scolioscore, the new invention, of course has nothing to do with a solution.

                          We believe that medical community should to have the intention to help us in other way (according this century) and not only giving resources in the (extremly) excepcional cases that someone has the intention of help us. Organizations not work in that way; in my job, if some work doesn’t seem much interesting for me, I should to do it anyway and if I refuse to do it, they willl find other people to do it.

                          But a complex situation leads to the fact that the attempt from medical community to do what we need never comes and is not ridiculous to think that we may change this situation.

                          Comment


                          • Originally posted by Pooka1 View Post

                            Surgery and conservative treatments are legitimate because they are administered by trained people.
                            Yes, a good training for example to recommend W&W (Wait to be Worst).

                            Originally posted by Pooka1 View Post
                            Alternative "treatments" are just dreamed up by lay people with no relevant training.

                            There is hope and there is false hope. Confusing them helps nobody.
                            I agree with the last line. Explain me which is the real hope for you in the cases when medical community only offer horrifying solutions. You are saying to that people that they should not try with something else and that other people trying to help them are criminals. I cannot believe that.
                            Last edited by flerc; 10-04-2011, 11:51 PM.

                            Comment


                            • Originally posted by flerc View Post
                              Yes, a good training for example to recommend W&W (Wait to be Worst).
                              This comment would only make sense if there were effective treatments. There are not. As far as anyone knows, watching and waiting saves the vast majority of kids with small curves from being treated needlessly, either because their curve won't progress or their curve will not be held by a brace. Only an estimated 10% might be helped temporarily and they all may still need surgery in adulthood. Given the situation, watch and wait is not only a legitimate plan but in fact the ONLY ethical way forward.

                              I agree with the last line. Explain me which is the real hope for you in the cases when medical community only offer horrifying solutions. You are saying to that people that they should not try with something else and that other people trying to help them are criminals. I cannot believe that.
                              They are fleecing innocent people with no results to show. They rely obligately on the scientific ignorance of the parents.
                              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


                              • I have widely replied before to all what are you saying now, but about W&W I remember that in the first or second scoliosis article I have read, researchers did a hard and of course well founded criticism to it; I'll try to find it.. and I'm not absolutely sure now, but I believe I have read in a post, not precisely a good comment from Dr. McIntire.. but of course the best would be to ask him, maybe I'm wrong.

                                Comment

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