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  • #46
    There are two groups of parents on this forum that is determined ONLY by their kids NOT by what they believe. One group with kids who reach surgical range and one group whose kids do not. There is little evidence that anyone can do anything to change groups.

    There is not the group that believes in conservative measures and the group that likes surgery that we see claimed over and over and over again. Accepting the fact that there is no good evidence for conservative treatments is NOT equivalent to liking surgery. That is a specious argument. Again, there is only the group whose kids become surgical and the group whose kids do not as far as anyone can tell.

    Hope for conservative treatments and realism about reaching surgical range are compatible.

    It is correct to try to keep subsurgical kids subsurgical but it is hard to make claims about any successes because there is no good evidence that conservative treatments work in the majority of cases that are destined to be surgical range.

    Fusion is far from perfect but that doesn't mean it isn't better than not having surgery for most kids who are in range. Normal is off the table. It's about cutting losses in my opinion. Surgery appears to cut the losses for these kids. That's why it is ethical. Surgeons like Asher can lament the need for surgery but they never stop doing it. They can't refuse to help these kids when they can help them.

    The rest is just commentary.
    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


    • #47
      Originally posted by Pooka1 View Post
      I don't understand why you care about this.
      Because I don’t like hypocrisy (I believe that nobody should to like it), specially when can confuse people giving an unreal hope as is happening in this case.

      Comment


      • #48
        Originally posted by Pooka1 View Post
        Accepting the fact that there is no good evidence for conservative treatments is NOT equivalent to liking surgery.
        Great point. I think that sometimes folks confuse the two.

        I opted to let my son undergo VBS because he had a 40 degree curve, and was not even 6 years old at the time, so NOTHING short of some type of surgical procedure was going to benefit him. It had nothing to do with being in favor of surgery over other (conservative) treatments.
        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


        • #49
          Originally posted by mariaf View Post
          Great point. I think that sometimes folks confuse the two.

          I opted to let my son undergo VBS because he had a 40 degree curve, and was not even 6 years old at the time, so NOTHING short of some type of surgical procedure was going to benefit him. It had nothing to do with being in favor of surgery over other (conservative) treatments.
          Yes I am not clear on why this is so near-universally misunderstood.

          So many have equated not bracing with "choosing" surgery. This makes no sense whatsoever given that there is no good evidence anyone can do anything to avoid surgery if that's what their curve will require.

          I think most parents do not have the first clue about the evidence case for bracing and it isn't really their fault. We have seen it in this very thread. All they see is surgeons prescribing it. But it is the case that we have an unproved treatment being the standard of care. So who can't blame them for thinking that not bracing is "choosing" surgery. Many surgeons have totally dropped the ball on being honest about this. I think they hide behind the standard of care and avoid the issue in fear of being sued perhaps. Like Sponseller, when asked, surgeons have to admit there is no good evidence bracing avoids surgery.
          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


          • #50
            Originally posted by flerc View Post
            Yes, we cannot choose the name, only they.
            Certainly everybody should to give a hoot against the hypocrisy of naming something provoking a great damage or irreversible negative changes as "minimal invasive".
            If they cannot do something better, they should to refer to it as it really is, not as it should to be.
            Originally posted by Pooka1 View Post
            I don't understand why you care about this.
            I understand why you are not care about this.

            Comment


            • #51
              Originally posted by Pooka1 View Post
              There are two groups of parents on this forum that is determined ONLY by their kids NOT by what they believe. One group with kids who reach surgical range and one group whose kids do not. There is little evidence that anyone can do anything to change groups.

              There is not the group that believes in conservative measures and the group that likes surgery that we see claimed over and over and over again. Accepting the fact that there is no good evidence for conservative treatments is NOT equivalent to liking surgery. That is a specious argument. Again, there is only the group whose kids become surgical and the group whose kids do not as far as anyone can tell.

              Hope for conservative treatments and realism about reaching surgical range are compatible.

              It is correct to try to keep subsurgical kids subsurgical but it is hard to make claims about any successes because there is no good evidence that conservative treatments work in the majority of cases that are destined to be surgical range.

              Fusion is far from perfect but that doesn't mean it isn't better than not having surgery for most kids who are in range. Normal is off the table. It's about cutting losses in my opinion. Surgery appears to cut the losses for these kids. That's why it is ethical. Surgeons like Asher can lament the need for surgery but they never stop doing it. They can't refuse to help these kids when they can help them.

              The rest is just commentary.
              If we are going to talk about groups thinking in a particular way, but only founding what we say over facts and not personal interpretations, certainly what is surprising in this forum is people with the clear intention to abolish braces. Every section, thread, post, is good for you to promote that. What have to do braces in this thread???
              If only pushing a button you could do that, braces would have disappear from the face of the year since time ago. Fortunately, it seems that you have not other way that repeating and repeating….always the same in this forum: ‘There is not good evidence, so they should to be abolish’. Certainly is incredible how you can do that. Someone with enough time could make a Super Mega post linking all your posts saying that.
              Instead of writing an interpretation about what I think about of braces and surgeries, reply (in the right place) what I said about what should to do people as you instead of trying to abolish braces:

              Originally posted by flerc View Post
              Something like that:

              1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
              2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
              3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
              4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
              5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of those studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
              6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
              7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
              8) They should to advertise parents that are not evidence of something good until end of life with fusion.
              9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
              10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.
              And really you may do even more if you want. It would be wonderful. I'm so far to underestimate the power of repetition.
              Last edited by flerc; 07-25-2012, 09:38 PM.

              Comment


              • #52
                Originally posted by flerc View Post
                Certainly is incredible how you can do that.
                Not really. I am just thinking about the children. You have to try to put yourself in their shoes.
                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


                • #53
                  Originally posted by Pooka1 View Post
                  Not really. I am just thinking about the children. You have to try to put yourself in their shoes.
                  And also those of their parents. If I would not do think in any of both (children or parents), I would not see bad to cut options to them without being absolutely sure that are not options of anything.
                  Last edited by flerc; 07-25-2012, 10:39 PM.

                  Comment


                  • #54
                    Originally posted by flerc View Post
                    And also those of their parents.
                    No. The parents don't have to wear the brace. Bracing is not an option until it is SHOWN to be an option. The world is still waiting.
                    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


                    • #55
                      Hdugger,
                      I have avoided this thread until now. You are right on. It's the same old argument over and over. However, it is MUCH easier to get surgery for a child than for an adult. Look at poor Osumike. He can't afford the surgery he desperately needs. If he were 17, there'd be no problem. Just take him to Shriner's and voila! The thing is, if surgery is delayed, yes it is always still an "option", but it's much harder to get. There aren't any charity services out there once a child turns 18. Adult surgeries are also inherently more dangerous. My personal opinion is that everything should be tried to avoid surgery. But when they are teenagers or younger and it looks like they are in danger of needing it, go ahead and get it done before that magical age where no one cares anymore. Choose the most appropriate surgery for the degree and type of curve, whether it be VBS or fusion. Are 18 or 19 year olds less valuable than a 17 year old? It's an unfair world.
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • #56
                        Sorry Paper05.. now this is a Brace thread.

                        Originally posted by Pooka1 View Post
                        No. The parents don't have to wear the brace.
                        I believe they suffers thinking in fusion and wants that someone give them more options, not less options as you are intending to do. If they fails in choosing brace, will be their responsability, not yours. They are not forced to choose it. But who will be the responsable that parents could not choose it any more?

                        I believe that is so much probable that finally, after repeating and repeating and repeating... for years..dozens of times in every thread ..every subsection .. every section of the greatest forum of the world.. with thousands of thousands of visits, you’ll success and braces will be abolish as you want. This is your purpose, as I said you dozens of times, if it will not be your purpose, you simple would link to the proper thread as I did and continuous saying what you want only there. But this is the way you found to do what you want.. moderator allows you to do that..
                        Even you are not promoting for right studies to be really sure of what you say. You WANT to abolish braces with all your soul!.

                        And when it happens, you’ll not avoid to think in the children going to fusion without had having the chance to avoid it using a brace (and what it has to complemented it). Definitely you have not way to be absolutely sure if fusion would have been necessary if your desire would have not been fulfilled. And what would you feel then? Who knows?.. Only you. Think in that.


                        Originally posted by Pooka1 View Post
                        Bracing is not an option until it is SHOWN to be an option. The world is still waiting.
                        Wich is the evidence that never showed to be an option as you are saying?. What means to be an option for you? To reduce the chance of surgery in ..5% 10%, 20%.. 40%.. how much? Do you believe that all parents understand the same for that as you? Are you sure that has not more chance as chanting as you have said? People I know didn't chanted so much as I know and as I know, chanting is not against the Hueter–Volkmann law.. or you believe it, so you said that?.. but anyway, link the serious and clear studies with all cases of high reduction in brace and high compliance and good complementation with something else.
                        Last edited by flerc; 07-26-2012, 01:37 AM.

                        Comment


                        • #57
                          Originally posted by flerc View Post
                          You WANT to abolish braces with all your soul!.
                          You can't just claim souls exist. You have to show it. The world is still waiting.

                          There is more nonsense out there than you can shake a stuck at. Please try to be more discerning.

                          For the nonsense in the US, I blame the war on science.
                          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


                          • #58
                            Originally posted by hdugger
                            There is not a soul who makes decisions about treatments who is reading this forum. And, even for people reading this forum, I don't think I've seen a single person swayed by the argument not to brace. It's a tempest in a teapot.

                            Braces are prescribed by doctors, and the decisions parents go through, they go through in the doctors office. I do have some concern that parents will be less strict about enforcing compliance if their confidence is shaken, but I really can't parent for them and nor can you. People will come on forums and say all kinds of nonsense. Either parents can make sense of that, or they're probably making some even more serious mistakes raising their kids, and ignoring their doctor's advice will be the least of their kid's problems.

                            There is one thing and only one thing I've learned in all my years online: You can't fix what's inside people's heads. I offer it up for what it's worth
                            Good analysis Hdugger, I’m thinking by now that you are right in all what you have said.
                            Thanks!
                            Last edited by flerc; 07-26-2012, 09:43 AM.

                            Comment


                            • #59
                              ConcernedDad changed his mind about bracing his daughter based on reading this forum as far as I know. He was alerted the state of the evidence for bracing and stopped bracing his daughter.

                              He is a scientist, though. We don't have many. That explains how these threads usually go. It is no coincidence that a scientists understood the (lack of) evidence and stopped bracing.

                              Please consider learning more about science and the scientific method and bioethics and such.
                              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


                              • #60
                                Originally posted by Pooka1 View Post
                                Please consider learning more about science and the scientific method and bioethics and such.
                                Do you believe you know about science and ethics? Is not what you showed here.
                                Certainly all what you are trying to do saying that, is to continuos repeating and repeating.. as I said before, always the same.
                                Don't use me any more for something so insane, please.

                                Comment

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