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  • #31
    Originally posted by JScoli91 View Post
    When you say “pure T fusions” could escape a potential revision are you meaning original fusions that are only in the thoracic vertebrae without extending above or below that? I am fused T2-T12 and everything above looks good and fine while my lumbar is crumbling. It had an existing curve before fusion and after and now it is getting worse, hence the need for another fusion within the next few months.
    Yes I mean fusion limited to the T spine but also a CURVE limited to the T spine. As I have mentioned, surgeons do not like to fuse lumbars in kids and sometimes will not and just fuse the T spine portion though the exact same curve involving the lumbar in an adult would be fused. Just knowing your fusion ends at T12 is not enough information to determine if it "should" have ended there and if it would have ended there if you were an adult.

    The surgeon I am having do the revision looked at my original xrays and said, “it’s easy for hindsight to be 20/20 but at looking at these images I’m curious why your original surgeon didn’t fuse you down to L2. If he would have gone down 2 more levels I don’t think you would have ever had to deal with another fusion.”

    I was kind of surprised when he said that, also angry at the original surgeon back when I was 12. But, we can’t change the past and can only move forward. Looking back on it a lot of what that surgeon did makes me go “huh?” He very clearly told both my parents and me that my first fusion would be my last fusion, that it would never get worse and after surgery scoliosis would not be something I HAVE but something I HAD. I guess I know now, after thinking it was just a part of my past dead and gone, he was wrong.
    That is a very disconcerting scenario. The comment by your present surgeon about going down to L2 is very strange for at least a few reasons and I am SHOCKED he stated that. I would pay money to hear him address...

    1. Going down to L2 is within the level that the "countdown" (to fusion of the entire lumbar) starts. That is, according to Boachie (world class expert), you have to really stay above L1 and really T12 (meaning the CURVE stopped there and not just the fusion). I would like to see the stats of needing an extension with the first fusion ending at L2. I am guessing it is pretty high and NOT "I don’t think you would have ever had to deal with another fusion."

    2. It is possible your first surgeon did think he should fuse to L2 but knew he would put you into a countdown to having the rest of your lumbar fused if he did and so hoped for the best.

    In either case whether fused too short or correctly, if you needed to be fused down to L2 there is no guarantee you wouldn't be in a countdown. I encourage you not to get down over this because it doesn't seem like you missed any boat. Of course I am a lay person and what do I know but *I* would not beat myself up over this given what you stated.

    Do you have bending radiographs? I wonder if they ruled out the lumbar also being structural then. That might explain why your lumbar is so bad now as a young adult.

    Your ability to be one-and-down is a function not just of where the fusion (correctly) ends but how straight the lumbar is driven by fusing the T spine. I suspect your second surgeon thinks that the L spine would be dead straight or close to it if your first surgeon went to L2. That is as may be but L2 is in the countdown range according to Boachie so it is not like you had a slam dunk escape hatch from a second surgery in my opinion (but what do I know?).

    In re your first surgeon telling you that you were one-and-done (if indeed your curve ended at T12), that is not beyond the pale and our surgeon told that to one of my twins. He did NOT tell that to the other twin because although they are both had pure T curves and are both fused T4-L1, only one ended up with a very straight lumbar and the other didn't (different types of T curves).

    I just can't fathom why your second surgeon told you what he did.
    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


    • #32
      Originally posted by Concerneddad View Post
      All of that said, I do think that there is something to be said about leaving the lumbar unfused in adolescents, even if you know that there is a good likelihood that it will have to be fused eventually. A lot of adolescents are heavily involved in things like sports and dance and music where they need that mobility. By leaving the lumbar unfused, you give (most of) them the opportunity to continue with that. That experience may be worth a second surgery. Plus, if you can delay revision into the late 30s or beyond, you can probably keep them relatively mobile when they have small children, where mobility is also important.
      Yes of course. I certainly am not arguing against that. I don't think there are many surgeons who will fuse an entire lumbar on a kid whereas they would fuse that same curve ion an adult. Dr. Hey stands on his head doing all sorts of maneuvers to keep L fusions in kids as short as possible.
      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


      • #33
        Originally posted by LindaRacine View Post
        I think it is absolutely essential for patients to be as informed as possible, and I hope most surgeons agree with that. I hope most surgeons aren't quoting revision rates because they're trying to hide that info in order to trick patients into having surgery. I think they don't report it to patients mostly because there's so much conflicting info. When you have one group reporting 10% revision rate and another reporting 40% revision rate, what number do you use? And, it's not nearly that simple, as it's not just two groups reporting... it's dozens.
        But surgeons must have an idea from the patients who have been seeing them for years for regular checkups. The ones who discontinue seeing them are probably a mixture of happy and unhappy patients.
        I'm not complaining about being told inaccurate revision rates. I never heard about revision rates at all from anyone because I never heard about the idea of revisions from anyone. All they cared to caution me about was infection and opioid addiction.

        Originally posted by LindaRacine View Post
        Although complex spine surgery has a relatively high likelihood of causing additional problems, I think the largest percentage of revision surgeries are for adjacent segment disease (ASD). The risk of ASD can be reduced by surgeons who really know what they're doing, but even the best surgeons have a bunch of patients with ASD. Scoliosis causes asymmetric loading on discs. That, and age, are the real reasons revision rates are so high.

        --Linda
        Now this I'd like to hear about. If you select the right vertebrae you can reduce the strain on other joints and reduce risk of or at least delay ASD?
        If you're fused from neck to sacrum, are there even more joints in the body that might be adversely affected?
        Last edited by Tina_R; 01-21-2020, 10:09 PM.

        Comment


        • #34
          Originally posted by Pooka1 View Post
          That is a very disconcerting scenario. The comment by your present surgeon about going down to L2 is very strange for at least a few reasons and I am SHOCKED he stated that. I would pay money to hear him address...

          1. Going down to L2 is within the level that the "countdown" (to fusion of the entire lumbar) starts. That is, according to Boachie (world class expert), you have to really stay above L1 and really T12 (meaning the CURVE stopped there and not just the fusion). I would like to see the stats of needing an extension with the first fusion ending at L2. I am guessing it is pretty high and NOT "I don’t think you would have ever had to deal with another fusion."

          2. It is possible your first surgeon did think he should fuse to L2 but knew he would put you into a countdown to having the rest of your lumbar fused if he did and so hoped for the best.

          In either case whether fused too short or correctly, if you needed to be fused down to L2 there is no guarantee you wouldn't be in a countdown. I encourage you not to get down over this because it doesn't seem like you missed any boat. Of course I am a lay person and what do I know but *I* would not beat myself up over this given what you stated.

          Do you have bending radiographs? I wonder if they ruled out the lumbar also being structural then. That might explain why your lumbar is so bad now as a young adult.

          Your ability to be one-and-down is a function not just of where the fusion (correctly) ends but how straight the lumbar is driven by fusing the T spine. I suspect your second surgeon thinks that the L spine would be dead straight or close to it if your first surgeon went to L2. That is as may be but L2 is in the countdown range according to Boachie so it is not like you had a slam dunk escape hatch from a second surgery in my opinion (but what do I know?).

          In re your first surgeon telling you that you were one-and-done (if indeed your curve ended at T12), that is not beyond the pale and our surgeon told that to one of my twins. He did NOT tell that to the other twin because although they are both had pure T curves and are both fused T4-L1, only one ended up with a very straight lumbar and the other didn't (different types of T curves).

          I just can't fathom why your second surgeon told you what he did.

          In response to “1.” My fusion as it currently stands ends at T12 but I had a second curve under my thoracic in my lumbar. It started at 25 and only corrected to 20 after the fusion was in place.

          Also, I am almost positive I had bending x rays done but because they weren’t digital and they were so long ago the original hospital no longer has those images. If on those bending images the curve corrected and didn’t persist that would mean it isn’t or wasn’t structural which means it wouldn’t or shouldn’t persist correct? I guess is there a chance your saying that this curve is not a “true” structural curve and instead is under the manipulation or control of muscles? Just trying to understand this portion of your reply.

          Can I have an official definition of curve classifications?
          Feb 2003 - Diagnosed C (35) T (45) L (25)
          Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
          Oct 2019 - Lumbar curve progressed to 40
          Nov 2019 - Thoracic curve progressed to 31
          June/July 2020 - T10-S1 Fusion with SI fixation correcting to C (8), T (14), L (8)

          Comment


          • #35
            Originally posted by JScoli91 View Post
            In response to “1.” My fusion as it currently stands ends at T12 but I had a second curve under my thoracic in my lumbar. It started at 25 and only corrected to 20 after the fusion was in place.
            I guess the question is why did it only correct a little bit? Was it because you actually also had a structural L curve (and therefore a double major curve and not a T curve) or because the fusion was not able to drive the lumbar straight due to wrong selection of end vertebra? In either case, you were likely to have some issue with your lumbar in the out years and I CAN'T BELIEVE your surgeon said that to you. I don't think there is any way he can know that at this remove and the last thing you need is the burden of thinking you missing some very important boat. Did he even ask you about bending films???

            Also, I am almost positive I had bending x rays done but because they weren’t digital and they were so long ago the original hospital no longer has those images. If on those bending images the curve corrected and didn’t persist that would mean it isn’t or wasn’t structural which means it wouldn’t or shouldn’t persist correct? I guess is there a chance your saying that this curve is not a “true” structural curve and instead is under the manipulation or control of muscles? Just trying to understand this portion of your reply.
            First of all this is all just my understanding because this is not my field. But I can tell you what happened with my daughters and the exchanges I had with our surgeon. That and reading up on this like I was doing another grad degree.

            If you could bend out your lumbar sufficiently (I don't remember the metric), it means the curve is not structural but rather compensatory that your spine does to balance your structural T curve. When the T curve is straightened during fusion, a compensatory L curve spontaneously corrects to balance that new much smaller T curve. This happened in both my daughters with one lumbar coming very straight to match her hyper-corrected T spine and the other having ~25* curve in her lumbar to match the ~25* curve left in her T spine because she could not be hyper corrected without having a high shoulder.

            The fact that your lumbar only corrected to 20* could mean it is compensatory and just matching your corrected T spine. What is the measurement of your corrected T spine? Is it close to that?

            The fact that your lumbar only corrected to 20* could also mean it was structural and can't correct more no matter how straight the T spine becomes. The bending films would be needed for this.

            My one kid had a pre-surgical compensatory lumbar curve in the low 30*s if I recall correctly but she bent it out to 4* I think. So it obviously is NOT structural but yet she is not out of the woods on needing more surgery despite the fact her fusion ends at L1. With a 25* lumbar, the discs are very unevenly loaded and that alone may drive the need for more surgery in the out years. She is 10+ years out with no problems yet and doing crazy physical activities.

            Extending your fusion or my daughter's fusion to L2 might straighten the lumbar more but going below L1 is a known risk factor for needing more surgery so this is a no-win scenario. Kobayashi Maru.

            Can I have an official definition of curve classifications?
            https://hsg.settingscoliosisstraight...lassification/

            https://www.hsg.settingscoliosisstra...curvatures.gif

            https://www2.aofoundation.org/wps/po...sification.jsp
            Last edited by Pooka1; 01-22-2020, 06:06 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


            • #36
              My original cervical was 35 my original thoracic was 45 and original lumbar was 25

              Curves corrected to cervical 8, thoracic 14, lumbar 20

              Today my curves are cervical 8, thoracic 31, lumbar 40

              I guess if it would be compensatory it wouldn’t keep increasing and twisting right? But I guess whether it’s compensatory or major or a structural what damage is done is done and revision is needed?
              Feb 2003 - Diagnosed C (35) T (45) L (25)
              Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
              Oct 2019 - Lumbar curve progressed to 40
              Nov 2019 - Thoracic curve progressed to 31
              June/July 2020 - T10-S1 Fusion with SI fixation correcting to C (8), T (14), L (8)

              Comment


              • #37
                Originally posted by JScoli91 View Post
                My original cervical was 35 my original thoracic was 45 and original lumbar was 25

                Curves corrected to cervical 8, thoracic 14, lumbar 20

                Today my curves are cervical 8, thoracic 31, lumbar 40

                I guess if it would be compensatory it wouldn’t keep increasing and twisting right? But I guess whether it’s compensatory or major or a structural what damage is done is done and revision is needed?
                It is my understanding that having a curve remaining even in a compensatory curve can lead to disc damage from the uneven loading. That is why the issue of driving straightness through the lumbar even if it is compensatory is thought to be necessary to avoid more fusion at the distal end. The issue of tethering not driving as much straightness in compensatory lumbars is an issue for a reason and surgeons are tracking it.

                The fact that your lumbar did not reduce to match you fused T Cobb is pretty good evidence it was and still is structural as far as I know. But that is a question for a surgeon really.
                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


                • #38
                  So I guess BOTH structural and compensatory curves can increase over time?
                  Feb 2003 - Diagnosed C (35) T (45) L (25)
                  Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
                  Oct 2019 - Lumbar curve progressed to 40
                  Nov 2019 - Thoracic curve progressed to 31
                  June/July 2020 - T10-S1 Fusion with SI fixation correcting to C (8), T (14), L (8)

                  Comment


                  • #39
                    Originally posted by JScoli91 View Post
                    So I guess BOTH structural and compensatory curves can increase over time?
                    I guess so but a surgeon would have to confirm.

                    I also think a lumbar can get damaged to the point of needing fusion without the curve getting larger. For example, the non AIS degenerative curves can be pretty small. I think we have a member here whose curve was in the 30s but she had debilitating pain and so was fused.
                    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


                    • #40
                      The bottom line for me in re you is that the comment about you being fused to L2 as being likely to have spared your lumbar is a Candid Camera moment. I still can't believe a surgeon would tell a patient that.
                      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


                      • #41
                        Originally posted by Pooka1 View Post
                        I guess so but a surgeon would have to confirm.

                        I also think a lumbar can get damaged to the point of needing fusion without the curve getting larger. For example, the non AIS degenerative curves can be pretty small. I think we have a member here whose curve was in the 30s but she had debilitating pain and so was fused.
                        Thank you for all of your reply’s they are very valuable. Either way compensatory or structural, increasing or not, my surgeon said he couldn’t garuntee the curve comprised of L1-L5 would increase over time but what would for sure increase in the absence of fusion is the twisting and rotation of each vertebrae. He said they are already twisted 30* off center and will continue to twist unless fused.
                        Feb 2003 - Diagnosed C (35) T (45) L (25)
                        Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
                        Oct 2019 - Lumbar curve progressed to 40
                        Nov 2019 - Thoracic curve progressed to 31
                        June/July 2020 - T10-S1 Fusion with SI fixation correcting to C (8), T (14), L (8)

                        Comment


                        • #42
                          Originally posted by JScoli91 View Post
                          Thank you for all of your reply’s they are very valuable. Either way compensatory or structural, increasing or not, my surgeon said he couldn’t garuntee the curve comprised of L1-L5 would increase over time but what would for sure increase in the absence of fusion is the twisting and rotation of each vertebrae. He said they are already twisted 30* off center and will continue to twist unless fused.
                          You mention rotation and that reminded me that structual curves are always accompanied by rotation. If your radiographs are clear enough to see this, it might be possible to say if you did have a structural lumbar prior to fusion.

                          But in any case, if the second surgeon would have fused you to L2 as he stated, that is NOT likely to be a one and done but we would have to find statistics to really know the odds.

                          It seems like the first surgeon may have bought you some time before needing to have your lumbar fused by staying completely out of the lumbar. Had he gone to L2 you might have needed an extension sooner. Who knows.
                          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


                          • #43
                            This thread has gotten off topic

                            Are there rules here about threads staying on topic?
                            I think this detailed discussion of Scoli's condition belongs elsewhere.

                            Comment


                            • #44
                              Sorry about that. Maybe Linda can move the posts to a new thread.
                              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


                              • #45
                                Apologies from my end also. Got wrapped up in a good dialogue.
                                Feb 2003 - Diagnosed C (35) T (45) L (25)
                                Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
                                Oct 2019 - Lumbar curve progressed to 40
                                Nov 2019 - Thoracic curve progressed to 31
                                June/July 2020 - T10-S1 Fusion with SI fixation correcting to C (8), T (14), L (8)

                                Comment

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