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A reason to do surgery earlier rather than later

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  • #16
    I was beginning to develop a dowager's hump... he felt it was just going to increase. The orthopedic specialist who referred me to Dr. H mentioned the 3 curves. Dr. H only talked about the one, so I assume there was only the one structural curve and the other two were compensatory (or whatever you call them!). They were each roughly 30º and the main one was 52º. Again, he's been in the business a long time and I trust his decision. I am down to 15º, have wonderful posture, and look great. Just have some limitations. Sometimes there are too many other facets that go into the decision making other than just the scoli-- DDD, stenosis, listhesis, etc. Again, possibly another reason to fuse earlier???
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

    Comment


    • #17
      Wow you got a top shelf correction! Hammerberg must be in that top eschelon.

      I wish I knew more about this stuff. Did they tell you if all the damage to the lumbar could have been avoided if the TL curve as stabilized much sooner?

      It's interesting that you are actively trying to protect the last two discs. I hope that works. It would be interesting to see some stats on how long fusions to L4 last before needing to be extended. Maybe you can extend it for the next several decades and never need more surgery. There have been a few testimonials where folks went about 30 years before needing an extension. And one parent was told there was only a 15% chance her teenage son would need an extension even though he was fused to L4 and was very young. So maybe things have been improved with the advent of pedicle screws.
      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


      • #18
        Sharon, I never asked any "what ifs" because there wasn't any point... I just dealt with what I had. Time will tell about the lower lumbars-- he said it was a gamble we could take, and we had about an 80% chance. It was my choice, but his recommendation as well.
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

        Corrected to 15°
        CMT (type 2) DX in 2014, progressing
        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

        Comment


        • #19
          Originally posted by hdugger
          I think cases like my son's, where surgery is risky because of congenital factors and where he's not feeling pain or progressing, are pretty obvious cases for waiting. Our surgeon did everything but shoo us out of his office
          I agree. I should have been more specific on age. I think these surgeons are leaning towards not waiting till age 50. Are they asking for 10 years? Not every 40-50 degree 20 year old scoli will submit to surgery. I think they are addressing the ones who wait, like me. I walked in there and I was whooped! I was begging Dr Menmuir at the end, it was only after he looked at my blood tests that he saw that I was in pretty good shape from skiing.

          Years ago, scoliosis surgery was scary stuff, almost like putting a man on the moon. Its amazing that these things actually happened! Today, and tomorrow, these things are so much easier to accept.

          After the shuttle comes home. That’s it. We have no space program.
          I think shock is setting in.
          Ed
          49 yr old male, now 63, the new 64...
          Pre surgery curves T70,L70
          ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
          Dr Brett Menmuir St Marys Hospital Reno,Nevada

          Bending and twisting pics after full fusion
          http://www.scoliosis.org/forum/showt...on.&highlight=

          My x-rays
          http://www.scoliosis.org/forum/attac...2&d=1228779214

          http://www.scoliosis.org/forum/attac...3&d=1228779258

          Comment


          • #20
            I think we have to necessarily limit this discussion to AIS, at least to start.

            In congenital, the vertebra are misshapen and I think the risks are higher when trying to fix that. I think that article Linda posted a while back shows that... neuromuscular and congenital were associated with more complications than IS.

            It would be truly unfortunate if these congenital cases also eventually involve formerly compensatory curves as AIS seems to do. It's a kick in the teeth balancing that with the higher risk of fixing congenital. It's less of a kick in the teeth doing that balancing with AIS apparently.
            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


            • #21
              Originally posted by jrnyc View Post
              needing surgery to the sacrum, with pelvic fixation, can be a BIG reason for an adult to delay surgery...especially an older adult...

              jess
              Yes and no. I think it depends on the pain. I had to do something.

              I have had no issues at all with my pelvic anchors. They look a little large but I don’t feel them at all.

              After driving a few golf balls, AND being complimented on my form, LOL (I’m not a golfer)
              I realized that it could and would work. I did this for Karen about a month ago just to see and I must say it felt good. I could play golf and drive balls with a reasonable amount of success.

              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #22
                Originally posted by Pooka1 View Post
                I think we have to necessarily limit this discussion to AIS, at least to start.

                Yes, I agree. Congenital and kyphosis are different animals.
                Ed
                49 yr old male, now 63, the new 64...
                Pre surgery curves T70,L70
                ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                Dr Brett Menmuir St Marys Hospital Reno,Nevada

                Bending and twisting pics after full fusion
                http://www.scoliosis.org/forum/showt...on.&highlight=

                My x-rays
                http://www.scoliosis.org/forum/attac...2&d=1228779214

                http://www.scoliosis.org/forum/attac...3&d=1228779258

                Comment


                • #23
                  Originally posted by titaniumed View Post
                  I have had no issues at all with my pelvic anchors. They look a little large [...snip]
                  That's not what the women say... most think they are VERY large.
                  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


                  • #24
                    And there are 2 of them! (Pelvic anchors)

                    Now I have 3 of something else I just cannot say here!

                    A congenital benefit. LOL

                    Ed
                    49 yr old male, now 63, the new 64...
                    Pre surgery curves T70,L70
                    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                    Dr Brett Menmuir St Marys Hospital Reno,Nevada

                    Bending and twisting pics after full fusion
                    http://www.scoliosis.org/forum/showt...on.&highlight=

                    My x-rays
                    http://www.scoliosis.org/forum/attac...2&d=1228779214

                    http://www.scoliosis.org/forum/attac...3&d=1228779258

                    Comment


                    • #25
                      Well, I have a question-- I understand about correcting the structural curve the compensatory curves will then align on their own, in a younger body with no problems. But does that always happen with older bodies? It just seems like once you get to a certain age, you are really pretty rigid/fixed and may have developed other problems that lead to longer fusions anyway. My real question, though, is if compensatory curves will correct themselves in an older person (let's say over 55) the way they do in a younger person? (Although in my case that wouldn't have been the solution at either end...) If so, that would definitely be a reason to have surgery at a younger age... I think.
                      Last edited by Susie*Bee; 07-11-2011, 08:51 AM.
                      71 and plugging along... but having some problems
                      2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                      5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                      Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                      Corrected to 15°
                      CMT (type 2) DX in 2014, progressing
                      10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                      Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                      Comment


                      • #26
                        Originally posted by Susie*Bee View Post
                        Well, I have a question-- I understand about correcting the structural curve the compensatory curves will then align on their own, in a younger body with no problems. But does that always happen with older bodies? It just seems like once you get to a certain age, you are really pretty rigid/fixed and may have developed other problems that lead to longer fusions anyway. My real question, though, is if compensatory curves will correct themselves in an older person (let's say over 55) the way they do in a younger person? (Although in my case that wouldn't have been the solution at either end...) If so, that would definitely be a reason to have surgery at a younger age... I think.
                        That's a great question! For a surgeon!!

                        This is EXACTLY my point about a seemingly large difference in the length of fusions between kids and adults. If most adults need longer fusions, especially to include the lumbar) due to either structuralized originally compensatory curves or due to ancillary damage in other areas of the spine due to even a sub-surgical curve elsewhere, then surgeons need to be telling parents that.

                        I have been tossing the stats around in my head and I think the main issue might not be structuralizing compensatory curves (though there are testimonials to that effect here) but rather outright damage to other parts of the spine because a structural curve is present somewhere in the spine.

                        The game appears to be FAR more complicated than just guessing about progression, especially for thoracic and thoracolumbar curves. If the surgeons know there is a high likelihood of lumbar involvement in the out years in untreated T and TL curves then it might be unethical not to fuse even sub-surgical curves. I think this is exactly what Dr. Hey is saying in the OP. We need data on this.

                        Lumbar curves are a different story for obvious reasons.
                        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


                        • #27
                          Originally posted by Pooka1 View Post
                          I agree. And yet we have any number of folks here claiming these guys are nefarious. It's jaw dropping.
                          I eventually had to comment on this.....It’s a shame that this happens.

                          After killing yourself for about 20 years in school, a specialist makes the big bucks ONLY to pay the loans off for years and years. In other words, it’s a 30 year plus minimum gamble...Fun and games are not part of the program.

                          It tells you something about specialists. It proves their dedication. They truly commit to a lifetime of learning both the art and science of medicine. Only after you have had your second chance at life, does one appreciate their efforts for perfection, in a realm of incredibly challenging odds....

                          After talking to Dr Hu at UCSF, I didn’t want to talk about scoliosis with her after the meeting was over. I felt that she, even though totally dedicated, needed some sort of break even on her day off at the last scoliosis conference....It was more about listening to the experts review current procedures and orthopedic difficulties and absorbing their ultimate wisdom. All I wanted to do was to give her a mental break, talk about lighter subjects which we did.

                          And after talks with my surgeon through the years, did I realize that he is a true genius who understands exactly what we go through, and will go through as scolis, a very understanding person, I just cannot accept anyone who would even think about posting or saying anything derogatory about scoliosis surgeons. These are people that just don’t understand......it makes no sense at all.

                          Ed
                          49 yr old male, now 63, the new 64...
                          Pre surgery curves T70,L70
                          ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                          Dr Brett Menmuir St Marys Hospital Reno,Nevada

                          Bending and twisting pics after full fusion
                          http://www.scoliosis.org/forum/showt...on.&highlight=

                          My x-rays
                          http://www.scoliosis.org/forum/attac...2&d=1228779214

                          http://www.scoliosis.org/forum/attac...3&d=1228779258

                          Comment


                          • #28
                            Originally posted by titaniumed View Post
                            I eventually had to comment on this.....It’s a shame that this happens.

                            After killing yourself for about 20 years in school, a specialist makes the big bucks ONLY to pay the loans off for years and years. In other words, it’s a 30 year plus minimum gamble...Fun and games are not part of the program.

                            It tells you something about specialists. It proves their dedication. They truly commit to a lifetime of learning both the art and science of medicine. Only after you have had your second chance at life, does one appreciate their efforts for perfection, in a realm of incredibly challenging odds....

                            After talking to Dr Hu at UCSF, I didn’t want to talk about scoliosis with her after the meeting was over. I felt that she, even though totally dedicated, needed some sort of break even on her day off at the last scoliosis conference....It was more about listening to the experts review current procedures and orthopedic difficulties and absorbing their ultimate wisdom. All I wanted to do was to give her a mental break, talk about lighter subjects which we did.

                            And after talks with my surgeon through the years, did I realize that he is a true genius who understands exactly what we go through, and will go through as scolis, a very understanding person, I just cannot accept anyone who would even think about posting or saying anything derogatory about scoliosis surgeons. These are people that just don’t understand......it makes no sense at all.

                            Ed
                            Ti Ed,

                            I completely agree with all you have wrote and quoted it in its entirety.

                            Parents are angry. They need an outlet for that anger. They want an answer yesterday.

                            Reading this forum has been eye-opening in terms of the completely ignorant and indefensible thought processes that occur out of stress and anger to folks who are likely very rational in every other area of their life. When the stakes are perceived to be high enough, some folks check their reason and ration at the door. These arguments they make simply make no sense.

                            While these are understandable sentiments, it is nevertheless inexcusable to throw the only people who can help them under the bus out of ignorance. Any noises implying surgeons are too dumb to realize alternative therapies work or too recalcitrant to give these alternative therapies a chance or too evil to want to search for a conservation treatment is to not be in the conversation at all. It's that bad in my opinion.

                            There is too much nonsense treatments in the scoliosis world for surgeons to individually and constantly knock down. Rather these alternative treatment purveyors need to pony up the evidence that it works so that surgeons can trial it. That never happens with alternative treatments. Folks can whinge about lack of money for fringe treatments but they never think about why there is no money from legitimate research sources funneling in. And the answer to that is very obviously NOT that they will lose revenue from fusions.

                            It strains credulity to suggest that surgeons can come up with a non-fusion treatment but fail to do so for non-scientific reasons. It's a failure by lay folks to understand the actual issues. And I suggest the reason they struggle is the abject poverty of science education in the US at least. When you have about half the public actively opposing scientific facts, how could it turn out worse?

                            It's cluelessness from a million different directions. On the wing.
                            Last edited by Pooka1; 07-12-2011, 05:52 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


                            • #29
                              http://drlloydhey.blogspot.com/2007/...scoliosis.html

                              (emphasis added)

                              Could earlier scoliosis have prevented this lumbar collapse? Probably yes. With modern current scoliosis techniques using pedicle screw fixation, and shorter constructs for thoracic curves (T5-L1 for example), 80-95% corrections are possible of the major curve, which results in nearly complete correction of the compensatory curves on either side, including the lumbar area. Although there can be an issue with adjacent level failure with lumbar fusions, it appears that the patients who have thoracic fusions down to L1 or L2, with most of the lumbar discs preserved actually wear their lower lumbar discs very well, especially when the top curve is well-corrected. Perhaps in the future we will have more longitudinal studies which will show that earlier short fusions can prevent the later collapse of the upper and / or lower curves that tend to affect quality of life a lot in the adult population. In this case, a “stitch in time may save nine”, in that a smaller operation can be performed on the adolescent or young adult which prevents the need for a longer instrumentation and fusion later in life to fuse across both the upper and lower curves. This younger age may also allow for a greater degree of correction, with subsequent improvement in load balance, and by fixing it at a younger age allow the discs to be subjected to more centered loads for the duration of the life of the person.
                              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


                              • #30
                                I know I'm late to the party on this, and I'm not really interested in getting involved in the debate. But I would like to respond to this question…

                                Originally posted by titaniumed View Post
                                I guess the question now should be, "Is there any advantage to delaying scoliosis surgery and what would those reasons be?" Other than young sports minded people, what would be the reasons?
                                …since it doesn’t seem like very many have given their perspective on it.

                                I could have had surgery in my teens, but didn't, and still haven't. Currently I am happy that I've waited. Here are some reasons why:
                                1. I didn't have to miss out on any childhood activities due to hospital stays, doctors appointments, or activity restrictions.
                                2. I have progressed in adulthood in terms of cobb angle and pain, but not dramatically as apparently I was supposed to (hence the surgery recommendation)
                                3. While its performed successfully all the time, it is still an extremely risky and invasive surgery that I am happy to avoid if possible
                                4. Having surgery in my teens would not guarantee that I wouldn't need revisions later in life
                                5. If I end up getting surgery at least I will be dealing with it when I'm already old (relative to a teenager) and in pain -- it will be my choice and I'll appreciate the benefits more.
                                6. If I end up getting surgery I'll have the benefit of decades of medical advancements on my side


                                I realize that there are counterpoints to every one of these (and I'm sure somebody won't be able to resist writing them out). But just wanted to point out that there are reasons to wait. They just may not be for everyone.
                                1993, Age 13, 53* Right T Curve w/ Left L compensatory
                                2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                                http://livingtwisted.wordpress.com/

                                Comment

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