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Dr. Hey has seen "countless cases" of progression in "stable" scoliosis

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  • #31
    Originally posted by jrnyc View Post


    regardless...i am NOT surprised in any way that my scoli progressed...
    and i do NOT believe the statistics...i bet there are more who
    progress who aren't "supposed to" than research hears about

    jess
    Perhaps.

    I just hope surgeons are more candid with patients and parents so there aren't more complete meltdowns in surgeon's offices over having to wear a brace for years AND needing fusion. There's a kick in the teeth right there that would be hard to get over I imagine especially if you had one or both parents constantly haranguing the kid to wear the brace because "You don't want surgery, do you? Then wear the brace!" I am guessing 100 out of 100 parents have said that to their kids who are braced not out of maliciousness but out of cluelessness.
    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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    • #32
      Jess,
      I believe as you do, that statistics are irrelevant to the patient after the fact of progression. There are outliers, and I'm sure that the stats aren't as pretty as many people try to pass them to be. It's mathemagics. I went to the doc yesterday for my trigger points. My muscles are so hard that he had a hard time even getting a needle into them. When he did, it made a horrible crunching noise. There's not a whole lot of people like me out there. I asked what they could do for people like me and he said there weren't a whole lot like me. He said my scoliosis was complicating things with my muscles. So I'm one, it seems, that is breaking new ground. I asked him why I'm not shrinking and yet my scoli is progressing. He attributed it to rotation. Then I mentioned that my belly button was off center. He said those are important landmarks to go by. Now I don't know whether I should revisit surgery. He finally ordered my lumbar epidural for next week. I'll see how my pain is after that, then make my decision whether to go back to the scoli doc.

      Sharon,
      I know a young woman who was braced for several years during the most difficult years of a young girls life. She ended up with a fusion at age 16. I have to say that she was never promised that the brace would prevent fusion, she hoped it would. When I asked her if she would have done it the same way knowing that she would end up needing fusion, she said, "Yes." When I asked why, her reasoning was that the brace probably helped her spine from getting even worse, even though she hated wearing it. In hindsight she was afraid of an even bigger surgery. As it was, they didn't get her curve completely straight because she had so much rotation. She's left with rotation and a rib hump (not as bad as before surgery) but is very happy she had it done.

      Flerc,
      No, I haven't heard of the therapy that you mentioned. I've never heard of the neurovegatative system nor seen it described in any medical textbook. If it is a legitimate therapy, I'm sure it would have been offered. If it is legitimate and just not practiced over here in the States, I would be interested in reading about it. I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance. My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing. My dad had trouble with his legs and died of some type of muscular dystrophy. =(
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

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      • #33
        Originally posted by rohrer01 View Post
        No, I haven't heard of the therapy that you mentioned. I've never heard of the neurovegatative system nor seen it described in any medical textbook. If it is a legitimate therapy, I'm sure it would have been offered. If it is legitimate and just not practiced over here in the States, I would be interested in reading about it. I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance.
        Rohrer, if you look for "neurovegetative system " Pubmed, you'll get a lot of links like this
        http://www.ncbi.nlm.nih.gov/pubmed/20940666
        Is also called as ANS http://advan.physiology.org/content/30/1/9.full

        I believe that only people obtaining good outcomes with it may say that a therapy is legitimate. I have heard many times about Neural Therapy, but I don't know nobody trying with it. I have read is the outcome of the the researches of recognized physiologists, but If you are only looking for therapies belonging to the official medicine, surely NT not belongs to that group.. at least not up to now. Who knows within some years, as have ocurred with other therapies.

        Originally posted by rohrer01 View Post
        My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing. My dad had trouble with his legs and died of some type of muscular dystrophy. =(
        I have read that may be a scoliosis cause but I didn't know that muscular dystrophy may kill.
        I have read that may be provoked because different causes. I hope you may know wich of all corresponds to your case. The right professional should to know it.

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        • #34
          Originally posted by flerc View Post
          Is also called as ANS
          Ahh, the autonomic nervous system. That makes more sense, now. Thanks, Flerc. I'll look at the links.

          Yes, Muscular Dystrophy kills. It paralyzes the muscles gradually. My dad was paralyzed in the feet, legs, arms, lower jaw and throat, then finally his diaphragm, in that order. They die of pneumonia from not being able to breathe. Some dystrophies are autosomal dominant, meanining each child has a 50/50 chance of inheritance.

          I read the articles. The second one is splitting hairs in medical terminology. The autonomic nervous system is, in whole, the part that keeps going when a person is unconsious. Breathing has characteristics of both, but usually continues during a state us unconsciousness. It's like the term "minimally invasive". It's hard to come up with medical terms that describe exactly the thought being conveyed.
          Last edited by rohrer01; 09-21-2012, 06:45 AM.
          Be happy!
          We don't know what tomorrow brings,
          but we are alive today!

          Comment


          • #35
            Originally posted by rohrer01 View Post
            It's like the term "minimally invasive". It's hard to come up with medical terms that describe exactly the thought being conveyed.
            Yes, but fortunately hypocrisy is not needed to denote somethig as the ANS.

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            • #36
              Originally posted by flerc View Post
              Yes, but fortunately hypocrisy is not needed to denote somethig as the ANS.
              Not hypocrisy, just lack of a better term. Language is a hard thing and there are not single words that precisely define everything.

              Now we are off topic. Sharon is going to nail us both for hijacking her thread. =)
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #37
                Originally posted by rohrer01 View Post
                Yes, Muscular Dystrophy kills. It paralyzes the muscles gradually. My dad was paralyzed in the feet, legs, arms, lower jaw and throat, then finally his diaphragm, in that order. They die of pneumonia from not being able to breathe. Some dystrophies are autosomal dominant, meanining each child has a 50/50 chance of inheritance.
                I have heard about autoimmune diseases leading to something like that. Certainly pulmonary fibrosis provoke pulmonar paralysis.
                I saw an incredible cure of some of those strange autoimmune diseases with stem cells.. but you need inmediately that someone says you what certainly happens in your case. We are living in the XXI century! It cannot be that Drs cannot say you the cause of your problem!

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                • #38
                  Originally posted by rohrer01 View Post
                  Not hypocrisy, just lack of a better term. Language is a hard thing and there are not single words that precisely define everything.

                  Now we are off topic. Sharon is going to nail us both for hijacking her thread. =)
                  Hipocrisy is the only one reason that someone may imagine to choice a term being EXACTLY the opposite that it will denote. Language is something very rich and is not needed so much imagination or inteligence to think in the right term!.

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                  • #39
                    Originally posted by rohrer01 View Post
                    I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance. My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing.
                    As I said you recently, you must to know what is provoking your muscular dystrophy. Certainly if the cause is something like an autoimmune disease or a lack of some specific mineral or vitamin, probably you cannot expect so much about any kind of PT. Anyway I believe that the right massage (something millenary as Tui Na) should to help in some way and in your case a muscular chains oriented PT seems to be more indicated that a fascia oriented method as I suppose that MFR is (check it, really I don’t know so much about MFR).

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                    • #40
                      Originally posted by flerc View Post
                      Certainly if the cause is something like an autoimmune disease or a lack of some specific mineral or vitamin, probably you cannot expect so much about any kind of PT.
                      Who knows.. but anyway, if it is provoked by a neurologic dysfunction, probably a neurologic oriented PT should be choose.. something as Vojta, which also is used in scoliosis and dystonia. I know about a great improvement in a neurologic scoliosis.. although it was combined with osteopathy.. Vojta was a neurologist and his method is used mainly in kids but also in adults.

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