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  • #76
    And what about people saying to be fine after surgery? what kind of proof are they giving?
    Anyway, you are being dishonest! In thousands of threads whrere nobody said to have good outcomes you did the same. Look the title of your thread. What you tried to do with the braist study. Your purpose here is only to convince that only surgery works! You are a lier if you deny this.

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    • #77
      Originally posted by rohrer01 View Post
      I have a curve that can not be touched by ANY method other than surgery
      Your curves don't reduces in a significant way when you are lying down?

      Comment


      • #78
        Originally posted by flerc View Post
        Your curves don't reduces in a significant way when you are lying down?
        My curve is measure within the margin of error both lying down and standing up. I've had both kinds of x-rays done and the curve magnitude of the upper curve at least doesn't change.
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

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        • #79
          Originally posted by rohrer01 View Post
          My curve is measure within the margin of error both lying down and standing up. I've had both kinds of x-rays done and the curve magnitude of the upper curve at least doesn't change.
          That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.
          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


          • #80
            Originally posted by Pooka1 View Post
            That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.
            I guess the relativity of it would be that it is a super stiff curve. Flerc has mentioned in his other threads about the difference in curve magnitude laying and standing. I suppose if it were not so stiff it might be easier to work with, no matter the method. Unfortunately, it is in an area that can't be reached by ANY exercise that I've ever seen. I wish it were. Even from a surgical perspective, I think my curve would be a nightmare to work on.

            I was talking to my sister about my latest developments with the dystonia that I have (you can read about them on my thread "I have some imaging CD's"). Having surgery is probably out of the question for me. Once those muscles would be cut away to expose the spine, I think they would harden into a ball that the surgeon may not be able to loosen enough to reattach them. That thought never occurred to me until recently. It's a scary thought to think there are no options left. There just aren't for me. =( I'm doing all I can already. My pain levels have suddenly quadrupled without any real explanation except the progression of my muscle diseases. I'll be talking to the neurologist and my PCP this week. Maybe I'll get some answers from the neurologist.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #81
              Originally posted by Pooka1 View Post
              That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.
              It not surprise me you think that.

              Comment


              • #82
                Originally posted by flerc View Post
                It not surprise me you think that.
                How will any change in the curve between standing and laying down ever be relevant to letting a person avoid surgery? We have a person on this group who worked out a lot and she had two large NON-structural curves. She STILL needed surgery if only to hope to save her lumbar.

                What EXACTLY is the relevance of whether a curve changes upon laying down to avoiding surgery for life? Is there any logical progression of thought on that by trained people? Where?

                Or is it just a thought by a random lay person (you) that it might matter?
                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


                • #83
                  Originally posted by rohrer01 View Post
                  I guess the relativity of it would be that it is a super stiff curve. Flerc has mentioned in his other threads about the difference in curve magnitude laying and standing. I suppose if it were not so stiff it might be easier to work with, no matter the method. Unfortunately, it is in an area that can't be reached by ANY exercise that I've ever seen. I wish it were. Even from a surgical perspective, I think my curve would be a nightmare to work on.
                  If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.

                  Do you see how much impossible is to talk with Pooka1 saying what she use to say?. I did a big effort to say this instead to reply her what she deserves.

                  Comment


                  • #84
                    Originally posted by flerc View Post
                    If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.
                    SO WHAT if ANY curve is reduced upon laying down? Are you telling her to lay down the rest of her life? It's just going to curve again when she stands.

                    There are people who have VERY flexible curves and it didn't save them from surgery.

                    What are you talking about?????????????? Can you state it in logical clear terms? Is the goal to avoid 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


                    • #85
                      Originally posted by Pooka1 View Post
                      SO WHAT if ANY curve is reduced upon laying down? Are you telling her to lay down the rest of her life? It's just going to curve again when she stands.

                      There are people who have VERY flexible curves and it didn't save them from surgery.

                      What are you talking about?????????????? Can you state it in logical clear terms? Is the goal to avoid surgery?
                      Logical? You have not idea what logics is. I'm still waiting your explanations about all the absurds you said in many previous threads. Only surgery works for you, at least is what you say, so WHAT THE HELL ARE YOU DOING HERE, MAY YOU EXPLAIN ME? GO TO SURGICAL SECTIONS IF YOU WANT TO PROMOTE SURGERY AND LEAVE PEOPLE FREE TO TALK ABOUT NON SURGICAL ISSUES. WE ARE HERE BECAUSE WE HAVE A SERIOUS HEALTH PROBLEM, DO YOU UNDERSTAND? WHAT KIND OF SINISTER PERSON ARE YOU?

                      This forum should to be shut down!

                      Comment


                      • #86
                        Originally posted by flerc View Post
                        Logical?
                        Case A: The curve does NOT decrease upon laying down. This means EXACTLY WHAT in terms of EXACTLY WHAT?

                        Case B: The curve DOES decrease upon laying down. This means EXACTLY WHAT in terms of EXACTLY WHAT?

                        Does any of it map to having to have surgery or avoiding surgery? If not WHO CARES??????????? Are you just typing to type?
                        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


                        • #87
                          I have not to answer none of your questions since you didn't replied me.. how many times? I'm not here to prove absolutely nothing about myself and I'm not doing none kind of hidden work here as you do since years ago. I elaborated a complete reasoning thinking in the Rohrer case, a logic reasoning based over some assumptions. Every reasoning is based over assumptions, did you know that? I don't know if those assumptions are right or not, probably not. I was talking with Rohrer about this, her problem, not with you, who are not in this section in order to solve a serious health problem, right? And certainly I have nothing to talk with a bad person as I think you are. And certainly it's making me very angry to see I'm almost the only one here saying to you what everybody should to be also saying you. I'm wasting my time here.. sure is not your case.. surely you are receiving something in return of course.

                          Comment


                          • #88
                            Originally posted by flerc View Post
                            surely you are receiving something in return of course.
                            This is objectively delusional.
                            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


                            • #89
                              Originally posted by rohrer01 View Post
                              Oh, and fusionless surgery is only available for growing kids so far. It's based on the premise that as the spine grows it straightens out (tethering). I'm not sure about the long term outcomes of VBS because I'm not convinced that the staples won't get metal fatigue and break. Mariaf would know WAY more about that than I do. I think she has a kid who is stapled. Those questions would be good to ask her.
                              Hi Rohrer,

                              Your understanding of fusionless surgeries is right on the money. VBS and tethering require that a decent amount of growth remains. In fact, the size of one's curve is usually not the reason that someone is not accepted for tethering, but rather lack of growth remaining. I am hearing of curves in the 50's and even a few in the 60's that were tethering and have achieved excellent results so far. Of course, we have to wait and see, but some parents/patients with larger curves are willing to take a shot at tethering to try to avoid fusion. It's a very personal decision, but for what it's worth, definitely one I think I would take.

                              As for the staples getting metal fatigue and breaking, the doctors I spoke with don't seem concerned. While VBS has only been in existence 12 or 13 years, this hasn't happened so far, and my understanding is that even in the unlikely event that a staple cracked down the road, both ends would be so solidly in the bone that it wouldn't be an issue. I think that initially, the plan was to perhaps remove the staples at the end of growth. But they have not caused any problems, so the doctors decided to leave them in.

                              No treatment method is perfect, but treating scoliosis seems to often be about choosing the lesser of the evils.

                              p.s. Thanks for the kind words. You 'get' why I stick around and put up with all of this nonsense (which I becoming much better at ignoring). I simply want folks to be aware that all of these options exist - period. I don't want them to have to find out about them by accident like I did - or worse, not find out at all. I am very happy to hear that I accomplished my goal in your case. I hope your future grandkids don't have to deal with scoliosis, but if they do, at least you will know what all of your options are.
                              Last edited by mariaf; 02-03-2014, 11:16 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


                              • #90
                                Originally posted by flerc View Post
                                If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.

                                Do you see how much impossible is to talk with Pooka1 saying what she use to say?. I did a big effort to say this instead to reply her what she deserves.
                                I am absolutely SURE that my curve will not move. If I stand in a way to try to straighten the more flexible one I look HIGHLY deformed and it is harder to breathe.

                                You asked me to stay out of it between Pooka1 and you. Please, don't drag me into it by asking me my opinion. I try to be friendly to EVERYONE here.
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

                                Comment

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