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  • #46
    Hi Linda R,

    I read that linked article and all I could say to myself is, 'What a Bunch of Bull%$#@"!!! The statement about being more physically fit, made me want to get out the shovel. At the age of 45, I couldn't have been in better shape!!! In this world of instant information, why is there no way for us to help the next generation of scoli's get the needed and available help sooner. I am donating my body to a medical teaching University.

    Don't get me wrong, I feel Blessed that I have been able to benefit from this medical miracle and very grateful to ALL Medical Professionals that have devoted their knowledge and skills to help us.

    Now here's the but, if I had known about adult surgeries sooner, I would have had it done then. There is not doubt in my mind that the younger you are (and I don't mean as a child), the faster and better you heal. That's life.
    Certain subject get my dander up, and half of you probably think I'm nuts, but there had to be a way to get this info to out. My Dr. told me that scoliosis affects 2% of the population, don't know if that's a fact, I took his word for it. However small our community is, we are still people that need help at some point in our lives. Afterall, our "condition's" prognosis is an eventual early death if progression isn't halted.

    What can we do,
    Shari

    Comment


    • #47
      Originally posted by LindaRacine View Post
      It's important to understand that the vast majority of scoliosis curves do not reach 25 degrees at skeletal maturity. Those folks very rarely require treatment, at least as far as we know (If your experience differs, consider yourself one of the unlucky ones.) Please remember that study conclusions talk about what happens to the majority, not what happens to everyone.

      As far as I know, we don't know if people who had those small curves when they were young end up with degenerative problems at a higher rate than the general public when they're older. I can tell you that I talk to patients with degenerative scoliosis all the time who tell me that they either didn't have scoliosis as a child, or didn't know they had it.

      --Linda
      Well, I don't know how "rare" the doctors like to think these things are. Either they are NOT rare, or I am an exceptional person that seems to come across many people that are the exception. I have an elderly gentleman friend whose scoliosis is somewhere in the 20's. He's developed severe spinal stenosis and had to be fused anyway. I don't think they fused the scoli, but what role did the scoli play???? He has a hard time walking without waddling like a duck. Is that due to pain or imbalance? Whichever the case, it made his recovery very difficult as compared to how it could have been. His wife was constantly "reminding" him to try to walk straight. It's kind of sad that people of all ages are told to "sit up straight" or "walk straight" or do this or that. The ones telling them just don't realize that they CAN'T. I really believe that the surgical criteria should seriously be re-examined. I know I'm not the only one falling through the cracks here. Would I be happy having surgery? Who knows? All I know is that I'm not a happy camper with the pain that I'm in for the age and shape I'm in. I have things I would rather do with my life than have to be on a lifelong, yes you heard that right, lifelong PT regimen and popping pills and patches. I supposed I should be thankful, but honestly, I KNOW I will reach surgical range and I really don't want to have this major of a surgery when I'm in my 70's or 80's. I've seen too many elders die from things that didn't have to kill them.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #48
        Originally posted by shari View Post
        hi linda r,

        i read that linked article and all i could say to myself is, 'what a bunch of bull%$#@"!!! The statement about being more physically fit, made me want to get out the shovel. At the age of 45, i couldn't have been in better shape!!! In this world of instant information, why is there no way for us to help the next generation of scoli's get the needed and available help sooner. I am donating my body to a medical teaching university.

        Don't get me wrong, i feel blessed that i have been able to benefit from this medical miracle and very grateful to all medical professionals that have devoted their knowledge and skills to help us.

        Now here's the but, if i had known about adult surgeries sooner, i would have had it done then. There is not doubt in my mind that the younger you are (and i don't mean as a child), the faster and better you heal. That's life.
        Certain subject get my dander up, and half of you probably think i'm nuts, but there had to be a way to get this info to out. My dr. Told me that scoliosis affects 2% of the population, don't know if that's a fact, i took his word for it. However small our community is, we are still people that need help at some point in our lives. Afterall, our "condition's" prognosis is an eventual early death if progression isn't halted.

        What can we do,
        shari
        amen!!!!!!!
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

        Comment


        • #49
          Originally posted by Shari View Post
          Hi Linda R,

          I read that linked article and all I could say to myself is, 'What a Bunch of Bull%$#@"!!! The statement about being more physically fit, made me want to get out the shovel. At the age of 45, I couldn't have been in better shape!!! In this world of instant information, why is there no way for us to help the next generation of scoli's get the needed and available help sooner. I am donating my body to a medical teaching University.

          Don't get me wrong, I feel Blessed that I have been able to benefit from this medical miracle and very grateful to ALL Medical Professionals that have devoted their knowledge and skills to help us.

          Now here's the but, if I had known about adult surgeries sooner, I would have had it done then. There is not doubt in my mind that the younger you are (and I don't mean as a child), the faster and better you heal. That's life.
          Certain subject get my dander up, and half of you probably think I'm nuts, but there had to be a way to get this info to out. My Dr. told me that scoliosis affects 2% of the population, don't know if that's a fact, I took his word for it. However small our community is, we are still people that need help at some point in our lives. Afterall, our "condition's" prognosis is an eventual early death if progression isn't halted.

          What can we do,
          Shari
          Hi Shari...

          There's a difference between what you're talking about and what we've been discussing in terms of the age ranges. If one knows they have to have surgery, and everything else being equal, one should have surgery earlier. But, for those who weren't diagnosed at a younger age, or who weren't aware of their scoliosis, or who weren't great candidates at a younger age, there's a lot of hope. These older patients are having great outcomes. I have the full text of this paper and will read it this weekend, but I doubt that the paper is meant as a recommendation for patients to wait because they have a chance at a better outcome. I suspect the message is that one is rarely too old to not see a significant improvement in quality of life when the pain or loss of function becomes too much.

          --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


          • #50
            Originally posted by rohrer01 View Post
            Well, I don't know how "rare" the doctors like to think these things are. Either they are NOT rare, or I am an exceptional person that seems to come across many people that are the exception. I have an elderly gentleman friend whose scoliosis is somewhere in the 20's. He's developed severe spinal stenosis and had to be fused anyway. I don't think they fused the scoli, but what role did the scoli play???? He has a hard time walking without waddling like a duck. Is that due to pain or imbalance? Whichever the case, it made his recovery very difficult as compared to how it could have been. His wife was constantly "reminding" him to try to walk straight. It's kind of sad that people of all ages are told to "sit up straight" or "walk straight" or do this or that. The ones telling them just don't realize that they CAN'T. I really believe that the surgical criteria should seriously be re-examined. I know I'm not the only one falling through the cracks here. Would I be happy having surgery? Who knows? All I know is that I'm not a happy camper with the pain that I'm in for the age and shape I'm in. I have things I would rather do with my life than have to be on a lifelong, yes you heard that right, lifelong PT regimen and popping pills and patches. I supposed I should be thankful, but honestly, I KNOW I will reach surgical range and I really don't want to have this major of a surgery when I'm in my 70's or 80's. I've seen too many elders die from things that didn't have to kill them.
            Degenerative scoliosis is different from idiopathic scoliosis. It is thought that idiopathic scoliosis affects about 10% of humans, but only 1-2% will ever require treatment. Degenerative scoliosis affects from 12-70% of humans, depending on who you believe.
            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


            • #51
              Originally posted by LindaRacine View Post
              They can't know it all.
              I agree they can't know it all. My question was how can we educate them? One Doctor at a time? I've educated my primary care doctor! Now that I have moved, maybe I'll get a chance at educating another PCP.
              Sally
              Diagnosed with severe lumbar scoliosis at age 65.
              Posterior Fusion L2-S1 on 12/4/2007. age 67
              Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
              Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
              New England Baptist Hospital, Boston, MA
              Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

              "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

              Comment


              • #52
                hi Linda
                question...maybe a dumb one...

                cant you start out as idiopathic scoli and end up as degenerative scoliosis...??

                sorry if that is a stupid question...but i swear i feel like i started as one and have ended up as the other...

                thanks...
                jess

                Comment


                • #53
                  Hi Linda R.,

                  I have great amount of repect for you. We have never met, but your dedication to your work and this forum is very much appreicated. I trust your judgement, and no one can doubt your knowledge on the subject, because you are one of us. You are also very fair as a moderator.

                  I hope you know that I am not arguring with you. I understood the article, but I didn't agree with 100% of it. I believe everything happens for a reason, and I was meant to come across that procedure on the DHC. My biggest frustration stems from knowing it was being performed, and I went through at least 5 Doctor's that had no clue. I would have never been able to have my surgery if it weren't for me accidentially found this forum. The tears just ran down my cheeks from relief.

                  I just think there has to be a way to educate the 'in between Doctor's'. Now that my PCP is aware of this surgery, he has been able to direct a few cases in the right direction.

                  This is one of those subjects that I'm like a dog with a bone. For 4 years I felt like I was standing at a window, but couldn't see through the pain. In other word..Hopeless.

                  It shouldn't have to be this way,
                  Shari

                  Comment


                  • #54
                    Shari--the same goes for me. I thank God that I found this forum. I remember the day I discovered it and found that I could be 'fixed.' It was a real shock to me.
                    __________________________________________
                    Debbe - 50 yrs old

                    Milwalkee Brace 1976 - 79
                    Told by Dr. my curve would never progress

                    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                    Pre-Surgury Thorasic: 66 degrees
                    Pre-Surgery Lumbar: 66 degrees

                    Post-Surgery Thorasic: 34 degrees
                    Post-Surgery Lumbar: 22 degrees

                    Comment


                    • #55
                      Originally posted by jrnyc View Post
                      hi Linda
                      question...maybe a dumb one...

                      cant you start out as idiopathic scoli and end up as degenerative scoliosis...??

                      sorry if that is a stupid question...but i swear i feel like i started as one and have ended up as the other...

                      thanks...
                      jess
                      Hi Jess...

                      Well, if you know you have idiopathic scoliosis, you will always have idiopathic scoliosis. If you have IS, but don't know it, and get diagnosed much later in life, it could be classified as degenerative scoliosis.

                      Regards,
                      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


                      • #56
                        Originally posted by Shari View Post
                        Hi Linda R.,

                        I have great amount of repect for you. We have never met, but your dedication to your work and this forum is very much appreicated. I trust your judgement, and no one can doubt your knowledge on the subject, because you are one of us. You are also very fair as a moderator.

                        I hope you know that I am not arguring with you. I understood the article, but I didn't agree with 100% of it. I believe everything happens for a reason, and I was meant to come across that procedure on the DHC. My biggest frustration stems from knowing it was being performed, and I went through at least 5 Doctor's that had no clue. I would have never been able to have my surgery if it weren't for me accidentially found this forum. The tears just ran down my cheeks from relief.

                        I just think there has to be a way to educate the 'in between Doctor's'. Now that my PCP is aware of this surgery, he has been able to direct a few cases in the right direction.

                        This is one of those subjects that I'm like a dog with a bone. For 4 years I felt like I was standing at a window, but couldn't see through the pain. In other word..Hopeless.

                        It shouldn't have to be this way,
                        Shari
                        Hi Shari....

                        Absolutely no worries. Unless you attack me personally, or have an idea that I deem as totally worthless, I love to engage in intelligent debate.

                        However, I don't really think this is a debate. I think we're just looking at two different elements of the referenced study. I happen to agree with you 100%, that medical professionals need to know more about options for adults with scoliosis. When I was diagnosed (as an adult), I had several medical professionals tell me that while they occasionally did surgery on adults, it was something I definitely wouldn't want to pursue. Had I believed them, I probably would have given in to the pain that I had, and eventually would have become disabled.

                        But, I think this study shows that if an adult gets to be 65 or older, and surgery or disability are their only options, surgery appears to be a very good one.

                        Regards,
                        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


                        • #57
                          Originally posted by Shari View Post
                          This is one of those subjects that I'm like a dog with a bone. For 4 years I felt like I was standing at a window, but couldn't see through the pain. In other word..Hopeless.

                          It shouldn't have to be this way,
                          Shari
                          One other point... studies like the referenced one are a good first step. While it's unlikely you'll find many PCPs reading SPINE, the results from these articles sometimes get picked up by mainstream publications.

                          --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


                          • #58
                            Originally posted by LindaRacine View Post
                            I happen to agree with you 100%, that medical professionals need to know more about options for adults with scoliosis.

                            Regards,
                            Linda
                            This is sooooo true. When I first mentioned to my PCP a couple years ago that I wanted a referral to an orthopedist, she told me to sit up straight!

                            Needless to say I don't see that PCP anymore. Scary to think that she's still out there with an idiotic belief like that.
                            Laurie
                            Age 57
                            Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
                            Thoracic curve corrected from 61* to 16*
                            Lumbar curve, unknown measurement
                            Disfiguring back hump GONE!!
                            Dr Munish Gupta
                            UC Davis Medical Center, Sacramento, CA

                            Comment


                            • #59
                              thanks, Linda...that is pretty much what happened to me...
                              diagnosed at age 30...but looking back, i can see what was going on from an early age...

                              i was severely traumatized by doctors when tiny...around 3 years old...so i avoided them like the plague once i was too old to drag!! i guess the scoli might have been picked up if i had seen doctors more frequently...or seen them at all in my teens!

                              jess

                              Comment

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