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  • Large Curves May Not Be Fully Reduced

    For Adult Surgical why not a general category for discussing aspects of surgery? Some posts don't fall under the category of one's specific first time or repeat surgery.

    Anyway, I did have fusion surgery so I will this post here under First Time.

    My curve was large. After my surgery it was smaller but far from zero. That was expected, I was told my curve would be halved, not eliminated.

    Is this not a consideration in choosing when to have surgery? The longer you wait, the larger the curve will get if the scoliosis is progressing, and the larger the curve you could be left with after surgery. Or am I wrong?

    I've seen posts here which say that there's never a hurry to get surgery. I wanted to post this as another consideration when deciding when/whether to have surgery.
    Last edited by Tina_R; 12-16-2019, 09:01 AM.

  • #2
    Originally posted by Tina_R View Post
    For Adult Surgical why not a general category for discussing aspects of surgery? Some posts don't fall under the category of one's specific first time or repeat surgery.

    Anyway, I did have fusion surgery so I will this post here under First Time.

    My curve was large. After my surgery it was smaller but far from zero. That was expected, I was told my curve would be halved, not eliminated.

    Is this not a consideration in choosing when to have surgery? The longer you wait, the larger the curve will get if the scoliosis is progressing, and the larger the curve you could be left with after surgery. Or am I wrong?

    I've seen posts here which say that there's never a hurry to get surgery. I wanted to post this as another consideration when deciding when/whether to have surgery.
    The size of the curves and a patient's age aren't the only factors that determine how much a curve can be corrected. Getting curves to straight or almost straight isn't the be all and end all. As far as I know, the only domain that was better for people who got more correction, is appearance. Since the cohort includes patients with almost complete correction, as well as patients who got almost no correction, that result is no surprise. I sort of doubt that most people who got corrected down to 20 degrees are actually much less happy with their outcomes than people who got near complete correction.

    To me, the most important reason not to fuse all curves once they hit the magic number (e.g., 50 degrees), is that a significant number of people manage to avoid surgery completely, even some with very large curves. And, one solution will never work for everyone. The best thing the medical community can do is to give patients as much information as possible, so they can make an informed decision that works for them. If a skeletally mature teenager wants to be a model, then earlier surgery may make sense. If a skeletally mature teenager wants to be a top ranked soccer player, then avoiding surgery may make more sense.

    --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


    • #3
      Not all curves can be hyper-corrected even if caught right at the threshold.

      Both my daughters were fused near the threshold Cobb so around mid 50's by the time they were on the table. My one daughter had a certain type of T curve that would have left her with a high shoulder if it was hyper-corrected. The surgeon left some curve in because of that. My other daughter had a different type of T curve and she was able to be hyper-corrected without having a high shoulder. The same surgeon left her with no technical scoliosis (< 10*).

      Surgeons take their patients as they come and it is not one size fits all despite two people (twins in this case) both having T curves of similar magnitude.
      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


      • #4
        Originally posted by LindaRacine View Post
        The size of the curves and a patient's age aren't the only factors that determine how much a curve can be corrected. Getting curves to straight or almost straight isn't the be all and end all. As far as I know, the only domain that was better for people who got more correction, is appearance. Since the cohort includes patients with almost complete correction, as well as patients who got almost no correction, that result is no surprise. I sort of doubt that most people who got corrected down to 20 degrees are actually much less happy with their outcomes than people who got near complete correction.

        To me, the most important reason not to fuse all curves once they hit the magic number (e.g., 50 degrees), is that a significant number of people manage to avoid surgery completely, even some with very large curves. And, one solution will never work for everyone. The best thing the medical community can do is to give patients as much information as possible, so they can make an informed decision that works for them. If a skeletally mature teenager wants to be a model, then earlier surgery may make sense. If a skeletally mature teenager wants to be a top ranked soccer player, then avoiding surgery may make more sense.

        --Linda
        I'm not hung up on getting correction down to zero, not at all. I realize that 20 is barely detectable with clothes on unless you have an expert eye. A teenager with fusion surgery scars is probably not going to be a model anyway unless they make her a poster child for "Young Scoliosis". Which is the kind of thing they would do these days, actually, to be inclusive.

        The number 50 was probably chosen as a figure by which to consider surgery because a lot of bad things begin to happen by 50 for many people, if not for everyone. I was probably at 50 when my problems began. It started with mild twinges in my hip when I walked, which increased and became crunching, grinding, and muscle fatigue-inducing years later.

        It remains to be determined whether my surgery reversed all my problems, it will take a year or two to find out. I need a cane and I still have some hip fatigue. It might have been better for me to have surgery at 35 degrees once it was determined that I was increasing. Then I never would have had to experience these problems in the first place. The fact that some people can never have a problem with large curves doesn't mean that others shouldn't consider heading off problems with earlier surgery.

        Surgeons have to achieve balance on the body during surgery. Not having good balance means using a cane for the rest of one's life. I wonder how they do that. Do they just eyeball it and make guesses from experience? It seems to me you would need computer-aided input to do that perfectly. I would think good balance is even harder to achieve with a large curve.
        Last edited by Tina_R; 12-17-2019, 04:05 PM.

        Comment


        • #5
          Originally posted by Pooka1 View Post
          Not all curves can be hyper-corrected even if caught right at the threshold.

          Both my daughters were fused near the threshold Cobb so around mid 50's by the time they were on the table. My one daughter had a certain type of T curve that would have left her with a high shoulder if it was hyper-corrected. The surgeon left some curve in because of that. My other daughter had a different type of T curve and she was able to be hyper-corrected without having a high shoulder. The same surgeon left her with no technical scoliosis (< 10*).

          Surgeons take their patients as they come and it is not one size fits all despite two people (twins in this case) both having T curves of similar magnitude.
          I'm sorry you have had to go through both your children having to be corrected, not surprising if identical twins. It must be hard to see your children with something like that and agonize over whether to make them have a big surgery at a young age.

          Sounds like both their curves were largely correctable due to their youth and it didn't hurt to wait to 50's in this case. Sometimes it does hurt to wait that long and I wonder if the problems it brings are always fully correctable.

          Thanks for sharing the details.

          Comment


          • #6
            Originally posted by Tina_R View Post
            Then I never would have had to experience these problems in the first place.
            No way of knowing that. Having surgery at 35 probably significantly increases the likelihood of needing revision surgery. At 50, expectations are lower, and there's less time for additional problems to develop.

            Originally posted by Tina_R View Post
            The fact that some people can never have a problem with large curves doesn't mean that others shouldn't consider heading off problems with earlier surgery.
            That's absolutely correct. Good surgeons always give patients all the info available, and let the patient make an informed decision.

            Originally posted by Tina_R View Post
            Surgeons have to achieve balance on the body during surgery. Not having good balance means using a cane for the rest of one's life. I wonder how they do that. Do they just eyeball it and make guesses from experience? It seems to me you would need computer-aided input to do that perfectly. I would think good balance is even harder to achieve with a large curve.
            There are actually equations based on all sorts of elements. Sharon gave a good example, where the doctors knew that x% correction was the optimal amount to reduce her daughter's curve to avoid having a high shoulder. Rods are pre-bent before placement in the patient and then tweaked if necessary to balance the spine. There actually are several software systems that measure scoliosis radiographs automatically, and then plan the surgery based on the measurements. I'm not sure how many, if any, of the top guys actually use software for this purpose.

            --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


            • #7
              Originally posted by LindaRacine View Post
              No way of knowing that. Having surgery at 35 probably significantly increases the likelihood of needing revision surgery. At 50, expectations are lower, and there's less time for additional problems to develop.


              That's absolutely correct. Good surgeons always give patients all the info available, and let the patient make an informed decision.

              --Linda
              Sounds like it's time that fosters conditions for revision surgery, but you could have lots of time in front of you whether your curve is 30 or 50, and it may take only a short time to get from one to the other. But you might develop problems at 50 and have none at 30, problems you hope go away after surgery but which may not.

              Expectations are lower at 50, meaning people at 50-60 may not see much improvement? Then why not operate at 30?

              My upper spine has been adding on since fusion surgery on my lower spine. My surgeon warned me to get my upper spine done right away, not to wait. If it's the same level of difficulty to fix a large curve as a small one, and patients can afford to wait indefinitely, why does my surgeon plainly prefer to operate on a smaller curve?

              It's the toughest choice when to have surgery. I think most patients will be overwhelmed by the number of factors in the decision and so some doctors may not give them much input. More info may not help anyone, it's largely a crap shoot anyway. But the generalization "There's never any hurry to get surgery", which I read somewhere here, sounds dangerous to me.
              Last edited by Tina_R; 12-17-2019, 05:41 PM.

              Comment


              • #8
                Originally posted by LindaRacine View Post
                There are actually equations based on all sorts of elements. Sharon gave a good example, where the doctors knew that x% correction was the optimal amount to reduce her daughter's curve to avoid having a high shoulder. Rods are pre-bent before placement in the patient and then tweaked if necessary to balance the spine. There actually are several software systems that measure scoliosis radiographs automatically, and then plan the surgery based on the measurements. I'm not sure how many, if any, of the top guys actually use software for this purpose.

                --Linda
                I'd love to see how they achieve all that. So they have to be architects and engineers as well as surgeons? There was one doctor, "deformity expert", I came across who advertised that he uses computer programs. Trouble was, I couldn't find an actual surgical resume for him though he had written lots of papers. I got the feeling he worked with surgeons.

                Comment


                • #9
                  Originally posted by Tina_R View Post
                  It's the toughest choice when to have surgery. I think most patients will be overwhelmed by the number of factors in the decision and so some doctors may not give them much input. More info may not help anyone, it's largely a crap shoot anyway. But the generalization "There's never any hurry to get surgery", which I read somewhere here, sounds dangerous to me.
                  That is absolutely true of many if not most adult fusions. Adults have the hardest time in these decisions because so many factors are at play including those you listed.

                  That is NOT true of adolescents where there is a consensus that you fusion T curves when they reach 50* with any growth remaining. I had ZERO choice in the matter of either of my daughters. So the decision was easy in that respect. When there is a medical consensus a parent would be crazy to think they had a choice. My daughters would likely be dead without fusion and I expect a court would have intervened had I not consented. Fusion saved their life and gave them a future. They never would have finished high school or gone on to college and grad school absent surgery. I am grateful for the surgeon and the science, the ONLY two things that saved my daughters.

                  Other curves in adolescents and any curves in adults do not enjoy much of a consensus on treatment it seems.

                  And in re Cobbs, degenerative curves are routinely fused in the 30's as far as I know. These people are debilitated and fusion at a low Cobb is their only hope. It is the adult idiopathic cases that are really hard.

                  I understand your thoughts about fusing at lower Cobbs. There is at least one pediatric surgeon who has fused children below the trigger angle in order to save levels in the lumbar. That doesn't seem to happen in adults. I think there is some issue of malpractice potential if a surgeon fuses an adult much below 50*. If not then I don't know the reason.
                  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


                  • #10
                    Originally posted by Tina_R View Post
                    I'd love to see how they achieve all that. So they have to be architects and engineers as well as surgeons? There was one doctor, "deformity expert", I came across who advertised that he uses computer programs. Trouble was, I couldn't find an actual surgical resume for him though he had written lots of papers. I got the feeling he worked with surgeons.
                    The surgeon who fused my daughters is a spine artist.
                    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


                    • #11
                      Originally posted by Pooka1 View Post
                      That is absolutely true of many if not most adult fusions. Adults have the hardest time in these decisions because so many factors are at play including those you listed.

                      That is NOT true of adolescents where there is a consensus that you fusion T curves when they reach 50* with any growth remaining. I had ZERO choice in the matter of either of my daughters. So the decision was easy in that respect. When there is a medical consensus a parent would be crazy to think they had a choice. My daughters would likely be dead without fusion and I expect a court would have intervened had I not consented. Fusion saved their life and gave them a future. They never would have finished high school or gone on to college and grad school absent surgery. I am grateful for the surgeon and the science, the ONLY two things that saved my daughters.

                      Other curves in adolescents and any curves in adults do not enjoy much of a consensus on treatment it seems.

                      And in re Cobbs, degenerative curves are routinely fused in the 30's as far as I know. These people are debilitated and fusion at a low Cobb is their only hope. It is the adult idiopathic cases that are really hard.

                      I understand your thoughts about fusing at lower Cobbs. There is at least one pediatric surgeon who has fused children below the trigger angle in order to save levels in the lumbar. That doesn't seem to happen in adults. I think there is some issue of malpractice potential if a surgeon fuses an adult much below 50*. If not then I don't know the reason.
                      Are you saying surgeons advise against fusing adults below 50, or at least don't like to do it? Maybe I'm misunderstanding you. I'm pretty sure I've seen people discussing their fusions at lower angles all the time on other sites, like Reddit. Usually young adults in their twenties.

                      "There is at least one pediatric surgeon who has fused children below the trigger angle in order to save levels in the lumbar. "

                      What do you mean by "in order to save levels in the lumbar"? How does that save levels?


                      It is easier when the decision is made for you, isn't it? I feel sorry for kids in parts of the world where there is no access to treatment like this.

                      Comment


                      • #12
                        Originally posted by Tina_R View Post
                        Are you saying surgeons advise against fusing adults below 50, or at least don't like to do it? Maybe I'm misunderstanding you. I'm pretty sure I've seen people discussing their fusions at lower angles all the time on other sites, like Reddit. Usually young adults in their twenties.
                        The only people who are fused at smaller Cobbs are adult degenerative cases as far as I know. I am skeptical that young adults are finding surgeons to fuse smaller AIS curves. Even if there is pain, they will send you to PT. They send adults with large curves to PT to avoid surgery.

                        "There is at least one pediatric surgeon who has fused children below the trigger angle in order to save levels in the lumbar. "

                        What do you mean by "in order to save levels in the lumbar"? How does that save levels?
                        I think there is some evidence that a structural T curve over a compensatory L curve can eventually drive the lumbar to be structural. I suspect the evidence for this is the prevalence of double curves in adult AIS compared to that in kids. I have suggested in the past that the trigger angle for T curves should be lower if there is a danger of structuralizing the lumbar if the T curve is not fused. There was one case of a woman who had a mid 30s T curve IIRC who developed a structural L curve under it. She was screwed because there was no surgeon who was going to fuse a mid 30s T curve in a young person.

                        One issue with tethering that has come to light is that it doesn't drive as much straightness through the lumbar as fusion. This is alarming to me and I would not choose tethering over fusion for my child if they told me fusion could drive more straightness through the lumbar than tethering. The reason this is important is that the load on the lumbar discs should be an even as possible to avoid future trouble. Indeed Dr. Boachie states that if a T fusion can straighten the lumbar enough then the surgery is one and done. Our surgeon told my one daughter she was "one stop shopping" for surgery because her lumbar was driven very straight with the hyper-correction. He did not tell my other daughter she was one and done because he had to leave a T curve to avoid a high shoulder which necessarily left a compensatory L curve in her lumbar because compensatory curves tend to balance the structural curve. She may be looking at more surgery though I hope tethering will be an option for her lumbar if that is needed. Essentially the surgeon traded even shoulders now with the possibility of losing her lumbar in the out years. I agree with that trade but she is clearly screwed compared to her (identical) twin on that score. There are other scores where she lucked out compared to her twin so it evens out.
                        Life is unfair. If I did have a faith before all this (which I didn't) I certainly wouldn't have it now. I can't live without my intellectual honesty and personal integrity.
                        Last edited by Pooka1; 12-18-2019, 07:23 AM.
                        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


                        • #13
                          Originally posted by Tina_R View Post
                          Are you saying surgeons advise against fusing adults below 50, or at least don't like to do it? Maybe I'm misunderstanding you. I'm pretty sure I've seen people discussing their fusions at lower angles all the time on other sites, like Reddit. Usually young adults in their twenties.
                          In younger adults (e.g., those under 50), curve magnitude is something to consider. In older adults, curve magnitude is meaningless. For them, it's typically about pain and loss of function.
                          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


                          • #14
                            Originally posted by LindaRacine View Post
                            In younger adults (e.g., those under 50), curve magnitude is something to consider. In older adults, curve magnitude is meaningless. For them, it's typically about pain and loss of function.
                            In this latest thread here is a young person who was fused at lumbar = 45, and 45 is lower than 50.

                            http://www.scoliosis.org/forum/showt...evision-needed

                            However I was wrong when I thought people were regularly getting fusion below the 40's. I'm sure you're right. Part of my problem was that I didn't realize very young people could have very large curves. I didn't, my scoliosis was always there but didn't get severe until my early fifties.

                            I am turning into one of those idiots that it's annoying to argue with. So I'll do more listening to people who know more than I do.

                            So what are the rules for surgery, it's not quite clear. Is it:

                            Young adult - Think about fusing at 50 regardless of other problems?

                            Older adult - Don't fuse, even at high angles, unless there are other problems?

                            Why the difference?

                            Comment


                            • #15
                              Originally posted by Tina_R View Post
                              In this latest thread here is a young person who was fused at lumbar = 45, and 45 is lower than 50.

                              http://www.scoliosis.org/forum/showt...evision-needed
                              Her THORAX was fused when she reached 45*. Her lumbar was not fused and still isn't. There is a variation in the reading of the Cobbs so a teen with a 45* T curve is fused by medical consensus. It is the only consensus as far as I know.

                              So what are the rules for surgery, it's not quite clear. Is it:

                              Young adult - Think about fusing at 50 regardless of other problems?

                              Older adult - Don't fuse, even at high angles, unless there are other problems?

                              Why the difference?
                              I am not sure there are any rules other than treating a large T curve in a teen.
                              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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