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  • #16
    Originally posted by richardis View Post
    Don't give the researchers that comfortable pillow. Spinal fusion is reversible. There is some proof of that already.
    It is called reverse-engineering. A doctor to be should aim to reverse that. If that is the answer a doc has to give me, then I could be a doctor myself.
    I allways thought that fuision surgery should to be reversible at least at some significant level but I have never read nothing about it. Screws and bars may be removed but how could be possible to restore disks? Surely something like tdr may be used but sure that nobody around the world is thinking in this because they are sure that only fusion may hold the spine straight for ever, so they will never think in reverse it.. they don't want to hear about something as Spinecor for adults or Vbt..

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    • #17
      Originally posted by flerc View Post
      I allways thought that fuision surgery should to be reversible at least at some significant level but I have never read nothing about it. Screws and bars may be removed but how could be possible to restore disks? Surely something like tdr may be used but sure that nobody around the world is thinking in this because they are sure that only fusion may hold the spine straight for ever, so they will never think in reverse it.. they don't want to hear about something as Spinecor for adults or Vbt..
      my disks are intact. the fusion is posterior.
      what is tdr?

      Spinecor? has anyone proof that it works?
      VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?

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      • #18
        Originally posted by richardis View Post
        my disks are intact. the fusion is posterior.
        what is tdr?

        Spinecor? has anyone proof that it works?
        VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?
        Any FDA approved treatment goes through a trial. Then, it gets accepted or refused. If there is a trial someone is betting big on the success of it, because the rejection is already guaranteed. Unless they pass the test. So why would someone waste his or her time and resources to fail big on such an investment?

        by the way, does someone has statistics about the approval rates ( or a YES to market a treatment, cure or product) of the FDA trials? It is not easy, but Newton or Einstein knew it first than anyone else as did some doctor or researcher who discovered a cure.
        Last edited by richardis; 06-03-2017, 05:42 PM.

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        • #19
          Originally posted by richardis View Post
          Spinecor? has anyone proof that it works?
          There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

          For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

          For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.
          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."

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          • #20
            Originally posted by richardis View Post
            my disks are intact. the fusion is posterior.
            what is tdr?

            Spinecor? has anyone proof that it works?
            VBT seems promising. I don't care about the FDA, I mean, the FDA is a just a screening admin to validate the treatments. Someone who knows that some therapy works has the green light of the FDA, the FDA just needs proof. If it works it will get approved, although it may take years because the GOV is slow and it takes way to many steps tu put a seal of quality on it. I am sure they ( researchers or docs ) must be celebrating now because they have tested it out and it has worked out. So, why would the FDA say no?
            Are your disks intact? As I understand fusion fuses vertebras adjacement, they uses bone to do this and disks are between vertebras. If not how may be irreversible?
            Spinecor allows to hold the spine straight, probably not so much as Vbt but movility is absolute.

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            • #21
              Originally posted by Pooka1 View Post
              There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

              For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

              For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.
              Kids spines are suffering two opposite forces the gravity force downward and the growth force (yes, is a force) upward, so probably a rigid brace not allowing nothing else than growing up may be better.
              But in adults is different and there is enough evidence that significant reduction in brace is possible. After removing it, who knows.. surely it depends on how many years and how many hours per day it was used and mainly, how much significant was the reduction in brace.

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              • #22
                Originally posted by richardis View Post
                what is tdr?
                Total disk replacement, something as an artificial disk

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                • #23
                  Originally posted by richardis View Post
                  Any FDA approved treatment goes through a trial. Then, it gets accepted or refused. If there is a trial someone is betting big on the success of it, because the rejection is already guaranteed. Unless they pass the test. So why would someone waste his or her time and resources to fail big on such an investment?

                  by the way, does someone has statistics about the approval rates ( or a YES to market a treatment, cure or product) of the FDA trials? It is not easy, but Newton or Einstein knew it first than anyone else as did some doctor or researcher who discovered a cure.
                  Scolioscore had not any official trial, Fda trusted in the company.
                  In my country new pharm products approval will not require now more than a few months and if nothing bad is discovered in that time, they will be sell.. our president seems to think that the best way to be sure if something is bad is to wait and see how many people died consuming it.

                  Comment


                  • #24
                    Originally posted by Pooka1 View Post
                    There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

                    For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

                    For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.
                    you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

                    Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

                    Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

                    why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
                    Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

                    We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

                    Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment. In fact, some doctors just pass the burden to the patient, making them sign an informed consent so they can wash his hands away from some possible complications or unexpected/unsuccessful outcomes) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.
                    Last edited by richardis; 06-03-2017, 10:22 PM.

                    Comment


                    • #25
                      Originally posted by Pooka1 View Post

                      For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

                      For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults.
                      You seems to be confused with rigid braces. Spinecor NEEDS muscle activity otherwise reduction in brace would be impossible!
                      The cases followed should only be done when significant reduction in brace was achieved but something so obvious seems to be difficult to understand.

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                      • #26
                        Certainly, when reduction in brace is achieved, progression is halt while the Spinecor is used!. The problem is that CLEAR is not interested in achieve reduction in brace, this is the reason why many adults using it continues with progression.

                        Comment


                        • #27
                          Originally posted by richardis View Post
                          you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

                          Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

                          Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

                          why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
                          Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

                          We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

                          Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.
                          Bussines are bussines and you or me have not enough power to change this world. See what happens with baldness, a fabulous bussines selling propecia, a drug (with the Fda approval) used for prostata cancer that alters hormonal and neurologicall system and produce serious sexual problems, depression, even some sucides are reported.. and every year you may see that the percentage of bald men increases.
                          But in order to achieve some change you need people wanting it, but people only wants to know which could be the best option for them now, they don't wants to think for themselves which could be the best possible option regardless if it exists or not today so they thinks that they cannot claim for something better.
                          Last edited by flerc; 06-03-2017, 07:24 PM.

                          Comment


                          • #28
                            Originally posted by flerc View Post
                            Are your disks intact? As I understand fusion fuses vertebras adjacement, they uses bone to do this and disks are between vertebras. If not how may be irreversible?
                            Spinecor allows to hold the spine straight, probably not so much as Vbt but movility is absolute.
                            Yes, I can see the disks in the x-rays. I am not sure if the disks are as lubricated as they were before surgery.

                            But I lost the ligaments, because the bones are fused. Some muscles are useless now because the bones are fused. Muscles attach on bones, so I don't know if the surgeon removed the muscles that move the vertebrae fused. I even don't know how the surgeon reattached the muscles to bones again. And this reattachmemt occured at the origin of muscles (not in the insertion of them) so there are a lot of things that were done in my surgery that are still a mistery to me. But I will get there.
                            Last edited by richardis; 06-03-2017, 07:31 PM.

                            Comment


                            • #29
                              Quote Originally Posted by Pooka1
                              "There is no good evidence it allows growing kids to avoid surgery. There is a reason most surgeons don't use Spinecor. A very good reason.

                              For adults, there is evidence it helps some people with pain but the muscles atrophy in the brace. So when they stop wearing it that have weaker muscles and may collapse.

                              For adults there is no evidence it corrects or even halts progression. That is why it is sold for pain only to adults."

                              Pooka1, do you mean that muscle atrophies or muscles imbalances lead to bone deformities? That is a good observation. Are you claiming that are the imbalanced muslces forces that make scoliosis progress further into adulthood?
                              It has already crossed my mind, but I think the genes play a bigger role.

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                              • #30
                                Originally posted by richardis View Post
                                Yes, I can see the disks in the x-rays. I am not sure if the disks are as lubricated as they were before surgery.

                                But I lost the ligaments, because the bones are fused. Some muscles are useless now because the bones are fused. Muscles attach on bones, so I don't know if the surgeon removed the muscles that move the vertebrae fused. I even don't know how the surgeon reattached the muscles to bones again. And this reattachmemt occured at the origin of muscles (not in the insertion of them) so there are a lot of things that were done in my surgery that are still a mistery to me. But I will get there.
                                I don't understand how may be vertebras fused and disks intact.
                                I have heard that muscles were cutted but I was not sure if it was only before new techniques.. I didn't know about ligaments really.
                                Any way it should to be analyzied if fusion may be reverse and replaced by Vbt.

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