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  • #76
    Originally posted by lduran View Post
    Well, sharing my experience, I can tell you that I started treating my scoliosis at 13 years old. Waited until I was 39 to do the surgery. At that point, my spine had deteriorated very much and couldn't put it off much longer. Yes, you'll be a version of what you are today; however, hopefully a version with less pain (if you ever get to that pain point). Seeing two doctors is definitely highly recommended. I did that and ensured that both surgeons were recommending the same approach to the correction. I have a five level fusion and there is probably more to come on the future, but I'll think about that when the time comes. I thankfully didn't have any other complications before or post surgery, so I am one of the blessed ones here.
    This board serves you a sounding board since many of us are either thinking about or gone ahead with the surgery. Every person and therefore outcome is different but at least you are making an educated decision and hoping for the best...that's all you can do. Loretta.
    Thank you very much for the response!

    Do you feel your spine deteriorated due to the bending/twisting of the spine causing uneven pressure on your vertebrae?

    Are you happy with waiting to have done or the surgery at that age or, in hindsight, would you have gotten it done sooner?

    The more I think about it, the more I feel like getting it done sooner. It seems most people wait until pain is unbearable to go through with the surgery. That is not a route I want to go down. However, it's not often you see people without pain 10+ years after surgery.

    Decisions, decisions....

    Comment


    • #77
      Originally posted by Stefandamos View Post
      THowever, it's not often you see people without pain 10+ years after surgery.
      I think it is OFTEN the case that adolescents and perhaps young adults like yourself have no pain 10+ years after fusion.

      Ask your surgeon if you are more likely to group with the adolescents or the older adults in terms of your outcome pain-wise. My kids were fused in 2008 and 2009 and while they tweak their backs like other people they certainly do not have any regular pain. And I doubt they will given what the surgeon said.

      You also have to sort the people whose fusions end above the lumbar versus those whose end in the lumbar.
      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


      • #78
        I haven't had a chance to reread this thread to see if I can figure out what type of curve the OP has, but I came across a very interesting article in Spine titled Which Lenke 1A Curves Are at the Greatest Risk for Adding-On... and Why? Stefan, if you have access to a medical library, you might want to check it out.

        Spine (Phila Pa 1976). 2012 Jul 15;37(16):1384-90. doi: 10.1097/BRS.0b013e31824bac7a.
        Which Lenke 1A curves are at the greatest risk for adding-on... and why?
        Cho RH1, Yaszay B, Bartley CE, Bastrom TP, Newton PO.
        Author information
        Abstract
        STUDY DESIGN:
        Multicenter review of prospectively collected data.
        OBJECTIVE:
        The purpose of this study was to evaluate the incidence of distal adding-on and associated risk factors in each of the 2 Lenke 1A curve patterns.
        SUMMARY OF BACKGROUND DATA:
        Previous work has demonstrated 2 distinct Lenke 1A curve patterns on the basis of the tilt of L4 (1A-L and 1A-R) that are different in form and treatment.
        METHODS:
        A query of a prospective multicenter adolescent idiopathic scoliosis database identified 195 patients with Lenke 1A curves. Patients were grouped on the basis of the direction of the L4 vertebral tilt: 1A-L (left) and 1A-R (right). The incidences as well as clinical and radiographical risk factors for adding-on were identified for each group. Adding-on was defined as an increase in the Cobb angle of at least 5° and distalization of the end vertebra of the thoracic curve or a change in disc angulation of 5° or greater below the lowest instrumented vertebra from the first erect to 2-year postoperative radiographs.
        RESULTS:
        Forty (21%) patients met the criteria for adding-on. The average increase in Cobb angle was 11.9° for those categorized as having adding-on compared with 3.8° in the non-adding-on group. Lenke 1A-R curves were 2.2 times more likely to experience adding-on than 1A-L curves. In the 1A-R curves, patients who added-on were fused at an average of 1.6 levels proximal to the neutral vertebra versus an average of 0.9 levels proximal to the neutral vertebra for the patients who did not add-on (P = 0.023). Patients who added-on were fused at an average of 2.5 levels above stable versus 2.1 levels above stable in those who did not (P = 0.06). Age and skeletal maturity were not identified as risk factors in the 1A-R curves. In 1A-L curves, younger (12.7 vs. 14.7 yr, P = 0.002) and less skeletally mature patients based on Risser grading (70% vs. 14% Risser 0, P = 0.004) were more likely to experience adding-on.
        CONCLUSION:
        Understanding the difference between Lenke 1A-L and 1A-R curve types may be helpful in preventing the adding-on phenomena postoperatively. To prevent adding-on in 1A-R curves, we recommend fusing distally to 1 level above the neutral vertebra or 1 to 2 levels above the stable vertebra. In 1A-L curves, adding-on may simply be a need to balance some lumbar curve progression in a young, skeletally immature patient.
        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


        • #79
          Originally posted by LindaRacine View Post
          It should definitely be a very difficult decision. We don't yet know your risk profile, in the long-term. And, we don't know that waiting is a good or bad thing. Since you don't have a crystal ball, you have to decide if the rewards of a straighter spine and potential improvement in pain outweigh the risk of the surgery causing you to be worse off in either the short- or long-term.

          If I had had a crystal ball when I had my original surgery 20+ years ago, I think I might not have had that surgery. I don't really have pain, but I hate that I've lost so much flexibility. I didn't lose all that much flexibility from the first surgery, but that surgery led to needing more surgery that significantly reduced my flexibility.

          Good for you taking your time to make the decision. There's no rush.

          --Linda
          I like how this thread is going when coming up with making the right decision despite how hard it is to make.
          I have a 45+ deg curve myself, but so far it has not worsen in 10 yrs since skeletal maturity, but I understand it may still worsen at some point.
          I was surprised to hear Linda say that she'd not have her initial surgery if she'd known she were to have less flexibility. So I ask, if you didn't have it, you'd still be living with a progressive curve today, how could you come with the conclusion that would be better? Would you think you'd have healthier lumbar discs if you had not at your age?

          Comment


          • #80
            I think the only situation where the weight of medical opinion is clearly towards fusion (or tethering now maybe) is a progressive THORACIC curve over 50* in a growing adolescent.

            The rest is up for grabs and the patient has to figure it out as far as I know.
            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


            • #81
              Other option

              One option that hasn't been mentioned yet, besides fusion and waiting/ do nothing. VBT is reaching a broader and broader audience by the month, and it is possible that you are a candidate now or in the near future. If you are not familiar with VBT, it is a surgical correction of scoliosis without fusion (pedicle screws and a flexible PET type of cable.) It can restore kyphosis as well as correct curves in your range. Currently, even 18 yr olds have received VBT and even an older adult (50?) Some patients find that they are a better candidate for the surgery if they engage in specific spine 'loosening up' exercises such as Schroth.

              Currently Dr. Braun (in NH) and the team of Drs Antonacci/ Betz/ Cuddihy are the two that I know of operating on older patients. However, VBT is spreading rapidly around the country. From the original few that were performing it only on immature adolescents a few years ago, to fully grown teens and more. You probably have a good chance for VBT if you look into it. Yes, logistically it is probably harder to get to the east coast for you, but there is going to be hardship somehow for any option.
              Emily, 43
              approx 50 T, 36 T/L

              Comment


              • #82
                Originally posted by Pooka1 View Post
                I think it is OFTEN the case that adolescents and perhaps young adults like yourself have no pain 10+ years after fusion.

                Ask your surgeon if you are more likely to group with the adolescents or the older adults in terms of your outcome pain-wise. My kids were fused in 2008 and 2009 and while they tweak their backs like other people they certainly do not have any regular pain. And I doubt they will given what the surgeon said.

                You also have to sort the people whose fusions end above the lumbar versus those whose end in the lumbar.
                According to my surgeon, I would heal more like the adolescents. I still have growth plates in my pelvis so even at 22 I'm not 100% skeletally mature.

                Comment


                • #83
                  Originally posted by LindaRacine View Post
                  I haven't had a chance to reread this thread to see if I can figure out what type of curve the OP has, but I came across a very interesting article in Spine titled Which Lenke 1A Curves Are at the Greatest Risk for Adding-On... and Why? Stefan, if you have access to a medical library, you might want to check it out.

                  Spine (Phila Pa 1976). 2012 Jul 15;37(16):1384-90. doi: 10.1097/BRS.0b013e31824bac7a.
                  Which Lenke 1A curves are at the greatest risk for adding-on... and why?
                  Cho RH1, Yaszay B, Bartley CE, Bastrom TP, Newton PO.
                  Author information
                  Abstract
                  STUDY DESIGN:
                  Multicenter review of prospectively collected data.
                  OBJECTIVE:
                  The purpose of this study was to evaluate the incidence of distal adding-on and associated risk factors in each of the 2 Lenke 1A curve patterns.
                  SUMMARY OF BACKGROUND DATA:
                  Previous work has demonstrated 2 distinct Lenke 1A curve patterns on the basis of the tilt of L4 (1A-L and 1A-R) that are different in form and treatment.
                  METHODS:
                  A query of a prospective multicenter adolescent idiopathic scoliosis database identified 195 patients with Lenke 1A curves. Patients were grouped on the basis of the direction of the L4 vertebral tilt: 1A-L (left) and 1A-R (right). The incidences as well as clinical and radiographical risk factors for adding-on were identified for each group. Adding-on was defined as an increase in the Cobb angle of at least 5° and distalization of the end vertebra of the thoracic curve or a change in disc angulation of 5° or greater below the lowest instrumented vertebra from the first erect to 2-year postoperative radiographs.
                  RESULTS:
                  Forty (21%) patients met the criteria for adding-on. The average increase in Cobb angle was 11.9° for those categorized as having adding-on compared with 3.8° in the non-adding-on group. Lenke 1A-R curves were 2.2 times more likely to experience adding-on than 1A-L curves. In the 1A-R curves, patients who added-on were fused at an average of 1.6 levels proximal to the neutral vertebra versus an average of 0.9 levels proximal to the neutral vertebra for the patients who did not add-on (P = 0.023). Patients who added-on were fused at an average of 2.5 levels above stable versus 2.1 levels above stable in those who did not (P = 0.06). Age and skeletal maturity were not identified as risk factors in the 1A-R curves. In 1A-L curves, younger (12.7 vs. 14.7 yr, P = 0.002) and less skeletally mature patients based on Risser grading (70% vs. 14% Risser 0, P = 0.004) were more likely to experience adding-on.
                  CONCLUSION:
                  Understanding the difference between Lenke 1A-L and 1A-R curve types may be helpful in preventing the adding-on phenomena postoperatively. To prevent adding-on in 1A-R curves, we recommend fusing distally to 1 level above the neutral vertebra or 1 to 2 levels above the stable vertebra. In 1A-L curves, adding-on may simply be a need to balance some lumbar curve progression in a young, skeletally immature patient.
                  Ive attempted to make sense of this information but it doesn't quite make sense to me.

                  It seems that its talking about possible lumbar curve progression post-op after the thoracic curvature has been fixed in an "s-curve".

                  So the direction of the curvature (either right or left) plays a role in progression? Lamens terms would be appreciated. Im not a medical professional by any definition.

                  Comment


                  • #84
                    Originally posted by 3sisters View Post
                    One option that hasn't been mentioned yet, besides fusion and waiting/ do nothing. VBT is reaching a broader and broader audience by the month, and it is possible that you are a candidate now or in the near future. If you are not familiar with VBT, it is a surgical correction of scoliosis without fusion (pedicle screws and a flexible PET type of cable.) It can restore kyphosis as well as correct curves in your range. Currently, even 18 yr olds have received VBT and even an older adult (50?) Some patients find that they are a better candidate for the surgery if they engage in specific spine 'loosening up' exercises such as Schroth.

                    Currently Dr. Braun (in NH) and the team of Drs Antonacci/ Betz/ Cuddihy are the two that I know of operating on older patients. However, VBT is spreading rapidly around the country. From the original few that were performing it only on immature adolescents a few years ago, to fully grown teens and more. You probably have a good chance for VBT if you look into it. Yes, logistically it is probably harder to get to the east coast for you, but there is going to be hardship somehow for any option.
                    After very brief reading, it seems VBT is meant to allow growth on only one side of the spine in order to fix the curvature. Seeing as my spine is no longer growing significantly, how would this be of benefit?

                    If it is something that has been done (successfully) on older patients, do you have any links so I can read about them?

                    Its amazing to see new technology coming out to help scoliosis. Unfortunately, catching it early on seems to be the only way to take advantage of it.

                    Comment


                    • #85
                      Originally posted by Stefandamos View Post
                      Ive attempted to make sense of this information but it doesn't quite make sense to me.

                      It seems that its talking about possible lumbar curve progression post-op after the thoracic curvature has been fixed in an "s-curve".

                      So the direction of the curvature (either right or left) plays a role in progression? Lamens terms would be appreciated. Im not a medical professional by any definition.
                      That's why I said that I think you need to check out the entire article. It's not always possible to understand the paper from just the abstract.

                      --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


                      • #86
                        Originally posted by Jinseeker View Post
                        I like how this thread is going when coming up with making the right decision despite how hard it is to make.
                        I have a 45+ deg curve myself, but so far it has not worsen in 10 yrs since skeletal maturity, but I understand it may still worsen at some point.
                        I was surprised to hear Linda say that she'd not have her initial surgery if she'd known she were to have less flexibility. So I ask, if you didn't have it, you'd still be living with a progressive curve today, how could you come with the conclusion that would be better? Would you think you'd have healthier lumbar discs if you had not at your age?
                        Sorry Linda if you have missed my question, would like to hear from you. I'm just wondering if one could just have lived better off with a progressive curve of say < 0.5 degrees a year, at age 40 yrs with say a 50 deg curve onwards to an estimated lifetime of say 80 yrs old, and not really have significant pain or problems compared to that of a fused elderly patient in your experience.
                        Last edited by Jinseeker; 10-05-2015, 10:46 PM.

                        Comment


                        • #87
                          Originally posted by Stefandamos View Post
                          After very brief reading, it seems VBT is meant to allow growth on only one side of the spine in order to fix the curvature. Seeing as my spine is no longer growing significantly, how would this be of benefit?

                          If it is something that has been done (successfully) on older patients, do you have any links so I can read about them?

                          Its amazing to see new technology coming out to help scoliosis. Unfortunately, catching it early on seems to be the only way to take advantage of it.
                          Firstly, the instrumentation that the surgeons use straightens the curve already. The amount of growth remaining for the patient determines how straight the surgeons will strive to make the curve intra-operatively. In a younger patient, some curve will be left in so that one side of the vertebras will grow, and one side will be arrested.

                          In a more mature patient, they will strive to gain complete straightness vs what they would obtain in a younger patient. So, immediately post op you can in theory have a straight spine already, yet full mobility (of course with some bend, lift, twist restrictions during healing.) Without growth remaining, I believe the surgeons rely on bone remodeling and the tether lasting for many years, so that growth isn't required.

                          There is a fb forum with many useful links as well as first hand experiences; send in a request to join if you are interested, since it is a closed group. It is 'Vertebral Body Stapling & Tethering Support.' The criteria for acceptance for this procedure is expanding, and there are stories of skeletally mature patients receiving this surgery already- you can link up through that forum. Hope this helps!
                          Emily, 43
                          approx 50 T, 36 T/L

                          Comment


                          • #88
                            But wouldn't those tethers also keep the spine immobile just like rods and screws would. What is bone remodeling and how would this be any different than restrictions a fusion would have? How do they remold a vertebrae that has already been wedged shaped for so long, and although it straightens the curve, how does it prevent it from further going back into a curved state after removing the tethers, I doubt they can do any derotation as well.

                            Comment


                            • #89
                              Originally posted by Jinseeker View Post
                              But wouldn't those tethers also keep the spine immobile just like rods and screws would. What is bone remodeling and how would this be any different than restrictions a fusion would have? How do they remold a vertebrae that has already been wedged shaped for so long, and although it straightens the curve, how does it prevent it from further going back into a curved state after removing the tethers, I doubt they can do any derotation as well.
                              Wow excellent questions! I wish we could see a surgeon answer them.

                              With regard to the ROM with a tether, I have read that to only restriction is bending away from the tether as you can imagine. So the spine stays bendable in the front-back plane and you can bend towards to the tethered side if the tether isn't too stiff I guess. I am not sure about twisting about the spine.

                              I bet they can get some de-rotation if they muscle the tether but obviously I don't really know.

                              In kids they will remove the tether is there is over-correction but I wonder if they can ever remove the tether in an adult?

                              Still, I think tethering adults is intriguing and I wish my daughters had that option. Missed it by a few years.
                              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


                              • #90
                                I just looked it up, haven't found any released as of yet on adults. Candidates are mostly only growing children with thoracic curves only. There hasn't been a long term follow up too but it is FDA approved.
                                Last edited by Jinseeker; 10-06-2015, 09:39 AM.

                                Comment

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