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  • Originally posted by Pooka1 View Post
    All I can do is go by what you write. Linda has had to reel you in a few times for a reason.
    Oh, give me a break. That is actually laughable.

    Comment


    • Originally posted by mamandcrm View Post
      And, no, I don't want my doctor "screening" out options for me that are accepted by many others in the medical community. I want to hear the option, the opinion, and then be allowed to make up my own mind.
      Nobody is saying you shouldn't get several opinions on experimental surgery. In fact you should get MORE opinions on that compared to accepted techniques.

      With respect to VBS, in fact they have narrowed the field of "good" candidates and they continue to do so. Until they show the technique is reliable and repeatable and predictable, it will be "experimental." Five years ago (or whatever), if you had a child who didn't meet the criteria, you would have been very grateful to NOT know about VBS. And the surgeons at the time were well within their professional purview to not mention it given what they learned in the more recent period.

      You are trying to reason from hindsight without considering that surgeons a while ago could have RATIONALLY not mentioned VBS to you. It might not have panned out as much as it has to date. Surgeons aren't clairvoyant. I don't think you are being fair to them. The great run want to help these kids and are competent.
      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


      • OK, you are just not seeing my point and the discussion is going pretty off-topic so I am going to call it quits. But, just to clarify as you seem to be under the impression that this was some time ago, it was last year. And nothing much changed in the 5 months between the appointments. My daughter was and still is a candidate for the procedure which by the way I am undecided about or we would be doing it. But, as I said at the beginning, that wasn't the point
        mamandcrm

        G diagnosed 6/08 at almost 7 with 25*
        Providence night brace, increased to 35*
        Rigo-Cheneau brace full-time 12/08-4/10
        14* at 10/09 OOB x-ray
        11* at 4/10 OOB x-ray
        Wearing R-C part-time since 4/10
        latest OOB xray 5/14 13*
        currently going on 13 yrs old

        I no longer participate in this forum though I will update signature from time to time with status

        Comment


        • Oh, and I like our surgeon...
          mamandcrm

          G diagnosed 6/08 at almost 7 with 25*
          Providence night brace, increased to 35*
          Rigo-Cheneau brace full-time 12/08-4/10
          14* at 10/09 OOB x-ray
          11* at 4/10 OOB x-ray
          Wearing R-C part-time since 4/10
          latest OOB xray 5/14 13*
          currently going on 13 yrs old

          I no longer participate in this forum though I will update signature from time to time with status

          Comment


          • Originally posted by mamandcrm View Post
            How do I ask if I don't know about it?
            You wouldn't want to know about a technique that in the professional opinions of most surgeons was too experimental and which, in hindsight, your child would not have benefited from.

            Are you saying you might still chose an experimental technique if you got five opinions against it?

            If it wasn't mentioned, isn't the likely reason because it was too experimental?

            All surgeons can do is form an opinion based on the information they have. It might have been very rational to not mention VBS before a certain point in time and the vindication for that is the narrowed candidate list compared to just a few years ago.

            Perhaps surgeons have seen experimental procedures come and go with only a handful ever becoming accepted technique. Wouldn't it be rational to use that experience to decide what to mention to a patient's parent?
            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 mamandcrm View Post
              OK, you are just not seeing my point and the discussion is going pretty off-topic so I am going to call it quits. But, just to clarify as you seem to be under the impression that this was some time ago, it was last year. And nothing much changed in the 5 months between the appointments. My daughter was and still is a candidate for the procedure which by the way I am undecided about or we would be doing it. But, as I said at the beginning, that wasn't the point
              One more question if I might before you call it quits please?

              Have you asked your surgeon why she didn't mention it?

              I think that answer would clear everything up.
              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
                Have you read the testimonials from kids in the bracing section. They will break your heart. Some days I can't read them.
                I've read some very successful stories in the bracing section. There are more stories in the adult surgical section (those that require revision after revision) that break my heart. Scoliosis sucks.

                Comment


                • I didn't explicitly ask her but we did discuss the procedure and her opinion about it at the 2d appointment. (She actually brought the topic up just as I was about to tell her that I had made an appointment at Shriners on my own for an assessment.) She actually is very interested in the procedure, thinks it has promise, was not against us doing it, but if I recall correctly I think she said she had concerns about doing the procedure on 25 degree curves--that some of those patients might be non-progressive and therefore undergo surgery unnecessarily. Sound familiar I understood her reasons for not being sure it was right for my daughter, and appreciated her opinion. But I still would have liked to know about it and heard that opinion at the first appointment. There you go...
                  Last edited by mamandcrm; 06-07-2009, 05:33 PM.
                  mamandcrm

                  G diagnosed 6/08 at almost 7 with 25*
                  Providence night brace, increased to 35*
                  Rigo-Cheneau brace full-time 12/08-4/10
                  14* at 10/09 OOB x-ray
                  11* at 4/10 OOB x-ray
                  Wearing R-C part-time since 4/10
                  latest OOB xray 5/14 13*
                  currently going on 13 yrs old

                  I no longer participate in this forum though I will update signature from time to time with status

                  Comment


                  • not saying any names

                    I don't want to say any names but in an effort to keep this board running smooth and efficient...

                    Please Do Not Feed The Troll!

                    In Internet slang, a troll is someone who posts controversial, inflammatory, irrelevant or off-topic messages in an online community, such as an online discussion forum or chat room, with the primary intent of provoking other users into an emotional response or to generally disrupt normal on-topic discussion.

                    Comment


                    • Originally posted by mamandcrm View Post
                      I didn't explicitly ask her but we did discuss the procedure and her opinion about it at the 2d appointment. (She actually brought the topic up just as I was about to tell her that I had made an appointment at Shriners on my own for an assessment.) She actually is very interested in the procedure, thinks it has promise, was not against us doing it, but if I recall correctly I think she said she had concerns about doing the procedure on 25 degree curves--that some of those patients might be non-progressive and therefore undergo surgery unnecessarily. Sound familiar
                      Sounds rational to me!!!!!!!!!!!!!!!!!!!!!!

                      So it seems she thinks there is a good chance your daughter's curve will not progress. That sounds like the reason she didn't mention it.

                      I think if we dig deep enough, most surgeons will be shown to be rational.
                      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


                      • Sorry, you are still missing the point. It's about options...OK, I quit now. Not getting sucked back in.
                        mamandcrm

                        G diagnosed 6/08 at almost 7 with 25*
                        Providence night brace, increased to 35*
                        Rigo-Cheneau brace full-time 12/08-4/10
                        14* at 10/09 OOB x-ray
                        11* at 4/10 OOB x-ray
                        Wearing R-C part-time since 4/10
                        latest OOB xray 5/14 13*
                        currently going on 13 yrs old

                        I no longer participate in this forum though I will update signature from time to time with status

                        Comment


                        • Originally posted by Dingo View Post
                          I don't want to say any names but in an effort to keep this board running smooth and efficient...

                          Please Do Not Feed The Troll!
                          Quote:
                          In Internet slang, a troll is someone who posts controversial, inflammatory, irrelevant or off-topic messages in an online community, such as an online discussion forum or chat room, with the primary intent of provoking other users into an emotional response or to generally disrupt normal on-topic discussion.


                          Dingo! This is great ... filing it

                          Comment


                          • Popcorn anyone?


                            Sorry I couldn't resist!

                            Comment


                            • Originally posted by mamandcrm View Post
                              Personally, I don't have the general confidence you do that doctors give patients all the alternatives--many only bring up the ones they agree with. For example, I think there are quite a few docs out there who do not inform their young scoli patients about VBS...because they personally do not find the studies/data on that procedure to date persuasive, or are undecided about it. Our doctor, who I think is great, did not bring VBS up to me until Gillian's 2d appointment (after she had progressed 10 degrees from 25 to 35) because, in her opinion, the jury's still out on it. I would have liked to know about it at the first appointment. Just food for thought...
                              Hi..

                              I think it's probably unreasonable to assume that specialists should bring up every potential treatment at the first appointment of every new patient, and that's not necessarily a bad thing. About 5 years ago, there was a surgeon who invented a new surgical technique. It was all the buzz on the internet (even here), and people from all over the country were making appointments with this guy. At the SRS meeting that year, when the technique was presented in a paper, the response was a blood bath. Most of the top surgeons were certain that the technique in adults would cause sagittal plane deformities. I've never witnessed an uproar like that before at a medical meeting. As it turns out, I'm guessing that the detractors were correct, since I've heard nothing about this procedure in the last 3-4 years. Should all patients have been told about it? Should surgeons have been willing to perform this procedure because patients were asking for it? I don't think so. I think that most good specialists tell their patients about the treatments that have some proof of being effective. No matter how much we read, we can't possibly ever know as much as our specialists do, so I think we should trust them to do what's in our best interest.

                              On the other hand, if someone goes into a specialist and says "I want the latest procedure, and I don't care if I'm a guinea pig," they probably have a responsibility to tell you about it.

                              By the way, in the not too distant future, I think we'll probably have a true value based healthcare system. When that happens, there will be no reimbursement for any treatment, alternative or traditional, that hasn't been proved to be cost effective. So, eventually, all these alternative providers are going to have to publish long-term follow up studies, or their gravy train will grind to a halt. Will there be people willing to put up all their own funds when there's no proof?

                              --Linda
                              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                              ---------------------------------------------------------------------------------------------------------------------------------------------------
                              Surgery 2/10/93 A/P fusion T4-L3
                              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                              Comment


                              • Originally posted by pooka1
                                All I can do is go by what you write. Linda has had to reel you in a few times for a reason.
                                Originally posted by mamamax View Post
                                Oh, give me a break. That is actually laughable.
                                Actually, I didn't giggle until I read this and was tickled by the thought of amazingly short memories.

                                I don't think anyone is going to disagree exercise and core strengthening is good for unbraced kids, braced kids, fused kids, unfused adults or fused adults. Offering false hope in some unproven "reality" of permanent curve correction for ANY of those groups here, however, is cruel in my opinion.

                                As has been pointed out many times, neither Schroth (nor any other type of exercise) has produced documented, PROVEN, correction of curvature - and they've had plenty of time to do it. 90 years of existence doesn't mean a thing in the absence of long-term results.

                                It stands to reason a more muscularly well-balanced body, and stronger core, *could* help prevent pain - but anything outside that is unrealistic. Do I think exercise is detrimental? No.

                                Is suggesting to a parent or patient that exercise is capable of producing a permanent change in their curve/s? Absolutely.

                                I understand how badly some people want an easy cure - and are willing to try anything - but there IS something to be said against emotions leading the way sans *logic* and *fact*. Sadly, I've seen an overabundance of that around here in the last few months.

                                All the study links in the world are worthless for the *here and now* unless the results document real evidence in long-term studies ... and I've yet to see any link posted that meets that criteria.

                                Ultimately, you'll have to decide whether you're looking for evidence or pixie dust before you decide which Troll goes on a diet ...

                                Good luck to all.
                                Fusion is NOT the end of the world.
                                AIDS Walk Houston 2008 5K @ 33 days post op!


                                41, dx'd JIS & Boston braced @ 10
                                Pre-op ±53°, Post-op < 20°
                                Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                                VIEW MY X-RAYS
                                EMAIL ME

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