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  • #46
    Understandable.

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    • #47
      Originally posted by LindaRacine View Post
      Totally agree that it's a flawed treatment. I think we'll eventually find that most kids who have spinal fusion surgery, do not require revision surgery. This is something that's been hard to track, because most of these kids are treated by surgeons who specialize in pediatric orthopaedics. They see their patients for a few years and then do no follow-up.

      https://www.ncbi.nlm.nih.gov/pubmed/31925756

      Unfortunately, adults, especially "older" adults, don't fare as well. I've heard numbers as high as 70%. If you've been looking at abstracts, I'm sure you've seen that the numbers are all over the place. Like kids, it's difficult to perform survivorship analysis, as a large percentage of patients don't return to their original surgeon for revision.

      --Linda
      That study on younger people is relatively good news but it only covers 10 years post-surgery on people of mean age 25, not a lifetime. When these young people get older and weaker I'll bet the problems multiply. When they reach their 60's I wonder how they will compare to people of the same age who just had the surgery a few years ago, in terms of needing revision.

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      • #48
        Originally posted by Tina_R View Post
        That study on younger people is relatively good news but it only covers 10 years post-surgery on people of mean age 25, not a lifetime. When these young people get older and weaker I'll bet the problems multiply. When they reach their 60's I wonder how they will compare to people of the same age who just had the surgery a few years ago, in terms of needing revision.
        There are a few very long-term studies that have been published, but the implants and techniques studied are not those in use today, so I'm not sure how appropriate they are in terms of making an informed decision today.

        I can tell you that, while I worked in the UCSF practice, we occasionally saw patients 30-50 years after surgery as a juvenile or teen who needed more surgery, but it was relatively rare. And, the UCSF practice is probably a good indicator, as their patient population is considerably older, on average, than other major spine center practices around the country.
        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


        • #49
          Originally posted by LindaRacine View Post
          There are a few very long-term studies that have been published, but the implants and techniques studied are not those in use today, so I'm not sure how appropriate they are in terms of making an informed decision today.
          That's true, but despite advances, some of the problems haven't been solved. Like, they don't know why some people get infections in their hardware after many years, do they? So they haven't developed many new techniques to solve that problem, have they? And new techniques can introduce their own problems that need to be ironed out.

          But yeah, you'll never know every bit of info you need in order to make an informed decision if you want nearly exact odds. It's too late for me now, but I wouldn't have cared so much about exact odds as I would just have wanted to know what could go wrong that's intrinsic to this type of surgery, especially stuff that's going to get me in the operating room again.

          Originally posted by LindaRacine View Post
          can tell you that, while I worked in the UCSF practice, we occasionally saw patients 30-50 years after surgery as a juvenile or teen who needed more surgery, but it was relatively rare. And, the UCSF practice is probably a good indicator, as their patient population is considerably older, on average, than other major spine center practices around the country.
          Was it as rare to see people 10-20 years later as it was 30-50 years later? Those surgeries would have been done at different times, of course.

          Isn't this an argument for doing surgeries more aggressively in young people rather than wait until they get older, if the outcomes are so much better for young people? Even if their curves are not in the 50-degree range? Because there are probably a lot of older people whose scoliosis started when they were young. Maybe they were 30 degrees at age 25 and then become 60 degrees at age 60. Why don't they straighten young people at 30 degrees? I guess there must be good reasons.
          Last edited by Tina_R; 01-24-2020, 03:58 PM.

          Comment


          • #50
            Originally posted by Tina_R View Post
            Was it as rare to see people 10-20 years later as it was 30-50 years later? Those surgeries would have been done at different times, of course.

            Isn't this an argument for doing surgeries more aggressively in young people rather than wait until they get older, if the outcomes are so much better for young people? Even if their curves are not in the 50-degree range? Because there are probably a lot of older people whose scoliosis started when they were young. Maybe they were 30 degrees at age 25 and then become 60 degrees at age 60. Why don't they straighten young people at 30 degrees? I guess there must be good reasons.
            It was probably more common to see people 10-20 years post-op than 30-50 years post-op.

            Your question about operating on kids to avoid operations as adults is a good one. However, a very large percentage of kids who have curves <40 degrees are going to avoid surgery altogether. It would be a shame, and terribly expensive, to operate on all of them.

            One thing that you should always keep in mind when thinking about all this, is that somewhere in the neighborhood of 85% of ALL adults will have spine pain that requires treatment at one time or another. So the fact that many adults with scoliosis require revision surgery should surprise no one.

            --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


            • #51
              Originally posted by LindaRacine View Post
              It was probably more common to see people 10-20 years post-op than 30-50 years post-op.
              That's not what I would have expected because techniques 10-20 years ago are supposed to be improved over those from 30-50 years ago.

              Originally posted by LindaRacine View Post
              Your question about operating on kids to avoid operations as adults is a good one. However, a very large percentage of kids who have curves <40 degrees are going to avoid surgery altogether. It would be a shame, and terribly expensive, to operate on all of them.
              Linda, I realize no one likes to operate on young people when they think it is likely for no reason. But in my case maybe it would have been better.

              I'm sure my scoliosis was not something that just appeared in my later years. I think I had it in my teens. My reason is that my recorded height at doctors' checkups decreased 1/2 inch sometime between my teens and my twenties. By the time I was 30 a photo of me in a low-backed gown showed scoliosis, though not obvious to everyone.

              In my mid 40's I noticed uneven hip bones. In my early 50's I experienced a mild twinge in one hip with every step I took. The twinge turned to a grinding pain and fatigue with walking that worsened over the years.

              No one in my GP's medical circle advised surgery, just physical therapy. I got fed up, went elsewhere, and had surgery in my 60's. Actually rushed into it to make up for lost time. My curve was as large as my age by then.

              It's debatable that I'm better off with the surgery. I needed a revision due to "adding on", for one thing. My walking ability is worse. While the grinding in the hip is gone, there's still fatigue and weakness there. I have poor balance and I need a cane or walker to get around. After many months there has been no improvement.

              If my surgery had been done when I was younger the curvature wouldn't have gotten so large that it interfered with my walking. Wouldn't I have been better off?

              Originally posted by LindaRacine View Post
              One thing that you should always keep in mind when thinking about all this, is that somewhere in the neighborhood of 85% of ALL adults will have spine pain that requires treatment at one time or another. So the fact that many adults with scoliosis require revision surgery should surprise no one.

              --Linda
              Yeah, but I'm concerned with revision that is required because of something negative the original fusion surgery did to the body. Like my adding on. Like degeneration of adjacent vertebrae.
              Last edited by Tina_R; 01-26-2020, 10:37 AM.

              Comment


              • #52
                Originally posted by Tina_R View Post
                If my surgery had been done when I was younger the curvature wouldn't have gotten so large that it interfered with my walking. Wouldn't I have been better off?
                Dr. Hey in Raleigh is one surgeon who agrees with this. I don't know how rare he is. Dr. Hey goes to great lengths to save levels.

                There is at least one ped surgeon who will operate below the normal trigger angle to save levels in the lumbar.

                If and when studies show that operating on T curves below the trigger angle saves lumbars down the line, then we will see the trigger angle become smaller. For all other curves, because they involve lumbar, there will never be a consensus on when to operate because if you go too low, the countdown to fusing the entire lumbar starts. There is probably some optimal time/lumbar level to get the most pain-free unfused time but we may never know what it is. Every patient is likely different.

                The ONLY consensus that I know about is fusing large, progressing T curves in adolescents. I have come to see why that is the only consensus. The rest of the case are very very very hard to decide.
                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
                  Dr. Hey in Raleigh is one surgeon who agrees with this. I don't know how rare he is. Dr. Hey goes to great lengths to save levels.

                  There is at least one ped surgeon who will operate below the normal trigger angle to save levels in the lumbar.

                  If and when studies show that operating on T curves below the trigger angle saves lumbars down the line, then we will see the trigger angle become smaller. For all other curves, because they involve lumbar, there will never be a consensus on when to operate because if you go too low, the countdown to fusing the entire lumbar starts. There is probably some optimal time/lumbar level to get the most pain-free unfused time but we may never know what it is. Every patient is likely different.

                  The ONLY consensus that I know about is fusing large, progressing T curves in adolescents. I have come to see why that is the only consensus. The rest of the case are very very very hard to decide.
                  I don't know all the jargon about scoliosis yet.
                  A T curve is a thoracic curve?
                  By save levels, do you mean save (or just put off) having to fuse more vertebrae later in future surgeries? By doing what?
                  Trigger angle - is that the angle at which surgeons decide fusion is necessary?

                  Comment


                  • #54
                    Originally posted by Tina_R View Post
                    I don't know all the jargon about scoliosis yet.
                    A T curve is a thoracic curve?
                    Yes.

                    By save levels, do you mean save (or just put off) having to fuse more vertebrae later in future surgeries? By doing what?
                    Well both. As far as I can tell absent being a surgeon, the straighter you can get the unfused lumbar the longer you can go without having to fuse the entire lumbar if the fusion goes to about L2 and lower. Maybe if it is dead straight and only goes a little into the lumbar a patient may never need an extension. Who knows. I would have loved to ask Dr. Hey in a comment on that blog post if he thought that one child who needed his entire lumbar fused but got away with a fusion just to L4 was likely to avoid further fusion for life as opposed to just buying him time prior to fusing the entire lumbar.

                    Trigger angle - is that the angle at which surgeons decide fusion is necessary?
                    Yes!. You are batting 1,000. :-)
                    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
                      Originally posted by Pooka1 View Post
                      Yes.



                      Well both. As far as I can tell absent being a surgeon, the straighter you can get the unfused lumbar the longer you can go without having to fuse the entire lumbar if the fusion goes to about L2 and lower. Maybe if it is dead straight and only goes a little into the lumbar a patient may never need an extension. Who knows. I would have loved to ask Dr. Hey in a comment on that blog post if he thought that one child who needed his entire lumbar fused but got away with a fusion just to L4 was likely to avoid further fusion for life as opposed to just buying him time prior to fusing the entire lumbar.



                      Yes!. You are batting 1,000. :-)
                      OK, but I don't quite understand your answer.

                      I said:

                      "If my surgery had been done when I was younger the curvature wouldn't have gotten so large that it interfered with my walking. Wouldn't I have been better off?

                      You replied:
                      "Dr. Hey in Raleigh is one surgeon who agrees with this. I don't know how rare he is. Dr. Hey goes to great lengths to save levels.

                      There is at least one ped surgeon who will operate below the normal trigger angle to save levels in the lumbar."

                      What has saving levels got to do with it?

                      My point was that operating on angles below the 50 degree threshold, no matter what the patient's age, may prevent functional problems from ever developing, problems that are not always curable by surgery. Like my problems walking.

                      It is an additional bonus if the surgery is done on a younger person at those smaller angles since young people we are told suffer much less from complications that require revision, even when they reach advanced age.

                      In my case, in retrospect, I don't care if levels are saved, I just don't want my curvature to get worse. A full fusion at 30 or so degrees might have worked best for me since I had no problems walking then. Why wait until problems develop? When you can see that the curve is progressing why not be aggressive with treatment?

                      Isn't the rate of change of the curve as important as or more important than its value?
                      Last edited by Tina_R; 01-27-2020, 02:51 PM.

                      Comment


                      • #56
                        Originally posted by Tina_R View Post
                        OK, but I don't quite understand your answer.

                        I said:

                        "If my surgery had been done when I was younger the curvature wouldn't have gotten so large that it interfered with my walking. Wouldn't I have been better off?

                        You replied:
                        "Dr. Hey in Raleigh is one surgeon who agrees with this. I don't know how rare he is. Dr. Hey goes to great lengths to save levels.

                        There is at least one ped surgeon who will operate below the normal trigger angle to save levels in the lumbar."

                        What has saving levels got to do with it?
                        Sorry I did run those two ideas together because they are somewhat related. Let me try again.

                        The reason you are having trouble walking may not be limited to just your curve getting larger. It may be due to more of your spine, especially your lumbar, becoming compromised if the fusion is done later rather than sooner.

                        1. Doing a fusion earlier before it involves more of the spine would be "saving levels".

                        2. Saving levels in the lumbar is directly related to needing an extension to include the entire lumbar.

                        While it might seem that pure T curves don't involve needing to save levels in the lumbar, it seems that people who are not fused as children and who only had a T curve as a child now need fusion not only in their T spine but also into their lumbar. It is like the lumbar is damaged from not straightening the T curve or not straightening it enough.

                        Dr. Hey does as much as possible to get the unfused portion of the lumbar as straight as possible while fusing as few lumbar vertebra as possible. I will find the case I am referring to.... I posted Dr. Hey's blog post.

                        My point was that operating on angles below the 50 degree threshold, no matter what the patient's age, may prevent functional problems from ever developing, problems that are not always curable by surgery. Like my problems walking.
                        Yes I think Dr. Hey would agree with that though other surgeons would not.

                        It is an additional bonus if the surgery is done on a younger person at those smaller angles since young people we are told suffer much less from complications that require revision, even when they reach advanced age.
                        For sure.

                        In my case, in retrospect, I don't care if levels are saved, I just don't want my curvature to get worse. A full fusion at 30 or so degrees might have worked best for me since I had no problems walking then. Why wait until problems develop? When you can see that the curve is progressing why not be aggressive with treatment?
                        You would care if levels were saved in your lumbar or not. I think the reason they don't treat all progressing curves is that some smaller progressing curves stop progressing and never need surgery.

                        Isn't the rate of change of the curve as important as or more important than its value?
                        The rate of change may be related to the eventual chance of progression to surgery territory but I don't know if that is universally true. Certainly both my daughters had fast moving curves (one was 5* a month for the entire observation period prior to surgery) but one of them had a curve that stopped progressing for a period and then started again whereas the other one continually progressed.
                        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


                        • #57
                          http://www.scoliosis.org/forum/showt...ain&highlight=

                          http://www.scoliosis.org/forum/showt...-L2&highlight=

                          http://www.scoliosis.org/forum/showt...man&highlight=

                          http://www.scoliosis.org/forum/showt...ity&highlight=
                          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

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