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  • #46
    Originally posted by CHRIS WBS
    What? Are you saying you would re-think having the surgery?

    Chris
    Sadly, before going into my very first long fusion, I don't think I totally realized that the chances were that I would be facing more surgery down the road. I would still have had that surgery, but might have been a little more mentally prepared that it might not be the last. When I was told I needed a second surgery, I was a bit shocked, but I knew a little more about it, and should have either insisted that he fuse to the sacrum or I should have gotten a second opinion. That's where I'm second-guessing. Now that I'm facing the third, I once again don't feel I have any other options. I could give you a list - it's a long one - of all the non-surgical options I have tried since the mid-1980s to try to avoid surgery. As I said in a previous post, I'm tired of my back controlling my life the way it has. I still feel I have a lot of "things to do, people to see," etc., and I don't want to spend the rest of whatever life I have left being miserable and constricted.
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

    Comment


    • #47
      do you really think there is that much difference between L-5 & sacrum movements/restrictions??? Ly[/QUOTE]

      I'm not sure what you are asking me. I don't know - but certainly will find out - how much difference there is. For me it's way more of an issue than bending, doing gardening (which I LOVE also!) etc. - I'm used to mobility issues like that since my first surgery in 2001 because I was already fused to L4 at that time. If you're asking why I'm having the surgery now, I simply can't stand up straight. To put it in perspective, I have a handicap sticker for my car but I still can't walk from the parking lot into a store without a lot of strain and pain. And I can't go to a store that doesn't have shopping carts to lean on because I won't be able to get through it. I truly wish I had an option other than surgery, but I don't see it.
      FeliciaFeliciaFelicia
      10/24/00 posterior fusion T4-L4 at age 57
      8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
      5/14/07 posterior revision with fusion to sacrum
      2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
      3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

      Comment


      • #48
        Trulyaries:
        Thanks so much for letting us know your story. It's so hard to know what I should do. I already discussed this with my doctor, and he still says he wants to fuse to L5, not S1.

        Berta,
        I'll discuss this once more with my surgeon when I see him the day before my surgery, but he is saying that I might not have to have another surgery and if I do it won't be so bad. So what do I say now??

        Brynn

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        • #49
          Hi Brynn and all,
          I just got back from my 1st post-op appt. and x-rays. It all looks great! I'm so happy. I'm fused from T5 (may have said T4 before) to sacrum. He got my lumbar from 78 to 23 degrees and my upper compensatory, which was less at 54, to 26. Both are "more or less" measurements and Dr. Gorek said the main thing was to give me balance of the two curves which were an S shape so if you drop a plumb line in the center of my back, the small curve I now have comes back to the middle. (does that make sense?)
          He said he is VERY pleased and that my shoulders and hips are level. He still sticks by the sacrum idea, saying my movement will not be much more restricted then if he had just gone to L5 and since I will never know the difference, I will adapt my mobility to what I have to work with.
          This will be a hard decision for you, but I had decided that at my age, I would do what my surgeon thought was best for me.
          You could research a bit more??? or have him talk to Dr. Gorek??? Maybe because my orginal curve was worse then yours, that could have affected Dr. Gorek's desision to do this.
          Good luck in your decision, berta
          Berta in Hawaii

          Comment


          • #50
            Dear Berta,

            Congratulations on your wonderful correction!! You inspire me!

            Aloha,

            Brynn

            Comment


            • #51
              L5 vs sacrum

              First of all: Berta -- congratulations on your great checkup!!

              Brynn -- I am also concerned since my surgeon is also planning to fuse me to L5, unless the MRI and discogram shows my L5 to be completely shot. My feeling is, we have to let the details go and trust our surgeons. Remember that we will not have very long fusions, but basically lumbar only (mine will start at around T12 -- my thoracic curve is around 30* and compensatory only). Most of the studies showing rapid degeneration of the L5-S1 joint cite problems with long fusions (starting at T4 or higher).

              We can't possibly know what goes into our surgeons' decision about how far to fuse. How can we???? I think we just have to trust them to do their job.

              Best,
              Chris
              A/P fusion on June 19, 2007 at age 52; T10-L5
              Pre-op thoracolumbar curve: 70 degrees
              Post-op curve: 12 degrees
              Dr. Boachie-adjei, HSS, New York

              Comment


              • #52
                Berta - congratulations! The plumb line showed my problem clearly on a standing xray with my knees locked. I am pitched forward, and the plumb line isn't even close to the middle. Did you remember to ask him about sitting?

                Brynn and Chris - please don't assume that my experience is typical and get concerned about your surgeries. Chris is right that you have to trust your surgeons and hope for the best, because we can't possibly know more than they do. You have raised the issue with them, they have given you their rationale, and now you have to trust them.

                I'm speaking with the benefit of hindsight in my case. Yes, maybe my surgeon should have gone to the sacrum since I had such a long fusion to begin with. If you do a search on the forums for flatback syndrome, you'll see it is usually a condition experienced by people who had surgeries with Harrington rods in the 60s and 70s. I haven't read anywhere on this site of anyone who had to have a revision so soon after a surgery like mine.

                I'm going to go ahead and have this surgery with the sincere hope and belief that it improves my quality of life and that I can stop focusing so much on back issues and get on with my life. Berta, maybe I can finally make that trip to Hawaii which I have been trying to do for 20 years!
                FeliciaFeliciaFelicia
                10/24/00 posterior fusion T4-L4 at age 57
                8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
                5/14/07 posterior revision with fusion to sacrum
                2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
                3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

                Comment


                • #53
                  Trulyaries, and all,
                  Yes, I agree with you, we have to trust our surgeons, and we all have individual issues, etc.
                  At first, Dr. Gorek was only going to start my fusion at T11 and ignore my upper curve since it did not give me pain, but was still considering going to my sacrum (because of my age, I think) My upper curve did not cause me pain. But, at the last minute when I asked him about my lumbar rotation hump, he said once he got in there, he'd see what he could do to detotate it. (he said I was pretty flexible, so that could help)
                  I really had NO idea going in, that he was going to "go for it" and fuse me so high up, but I guess that is what helped with the cosmetics, which I had put in a request for "if possible!".
                  I DID remember to ask about sitting and he said it was OK (???), as long as I felt comfortable, that my hardware would prevent me from sitting too long and hurting myself. So who knows!!!??? He said to support my lower back on the flght and do lots of standing, sitting, what ever makes me comfortable.
                  Trulyaries, I hope this is your final surgery and it solves the pain and bending you have now and you get to Hawaii!! I don't blame you for wanting that quality of life, and I would do it too. If you get to the Big Island, please look me up!!
                  Only 6 more days, and we get to go home, finally! We've been gone almost 5 weeks!
                  No Brynn, we have not been in Hawaii all this time, but at a friends in Novato. The doctor had told me, figure on at least a month post op before I could fly that far.
                  Berta in Hawaii

                  Comment


                  • #54
                    The younger you are, the better correction you will get??? Sounds to me, Berta, like you just blew that theory right out of the water!

                    Chris

                    Comment


                    • #55
                      Hi Chris,

                      I really believe if you are flexable they can get the best correction. Age is only part of the equation. Did you do your bending x-rays yet?

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                      • #56
                        No, but written reports I have received from the surgeons I've seen indicate my curve is stiff.

                        Chris

                        Comment


                        • #57
                          Trulyaries,

                          I had my very first scoliosis surgery in April 2004. I went back one year later and had an osteotomy done at the L3 level due to leaning forward and my balance not correct. My doctor didn't want to call it "flatback" because "technically" I didn't have it because of the way they did the surgery. But when you look at me, you definetly see it. I am now going for surgery # 3, just three years out from the original surgery and only 2 years out from revision. I am seeing Dr. LaGrone out in Amarillo. He says it's "flatback". But he also agrees that when you first look at my x-rays they look pretty good. Then you look at me, and look at the x-rays a little closer and harder. The bottom screws have halos around them which suggests some kind of movement. My plumb line is off. This time I'm having an osteotomy done at the L2, re-instrumentation again extending it to the middle of the sacrum (I'm already fused to S1). More than likely (90%) he said he will be instrumenting me to the pelvis. I just got my report back from my myleogram and I have two areas where the lumbar vertrebra have slipped. I'm waiting for my PT specialist to e-mail me the report in plain old english. I am going to try to get a hold of Dr. LaGrone tomorrow and see if anything is going to be different because of the report. I also have a 6th lumbar vertrebra. I too cannot walk around a store for very long unless I have a shopping cart to hold myself up with. I'll let everyone know what the report says.
                          Theresa

                          April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
                          Thorasic - 79 degree down to 22
                          Lumbar - 44 degree down to 18
                          Fused T2 to sacrum
                          June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
                          MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

                          FUSED T2 - SACRUM 2

                          Comment


                          • #58
                            Wow! I'm learning so much just from this thread.

                            Chris ("Singer"): Our fusions will be very similar. My posterior fusion will be just 2 levels up from yours, although my anterior fusion will be to T12. I'd been trying to find out if that was considered a long fusion but no one had answered that for me until your post. Maybe the fact that our fusions aren't so long is part of why our surgeons are fusing us to L5 instead of to S1. I hope so. Since this has been bothering me again I have decided to call one of Dr. Akbarnia's associates tomorrow to discuss this issue with him. I do agree that ultimately it is best for us to let go and trust our surgeons.

                            Trulyaries: I've learned from you that one surgery is not necessarily all that I might need in my life, but I also can't decide that this first one is setting me up for a lifetime of back surgeries. You're so right when you say that each of us is an individual. I really, really hope that this third surgery is the last one you'll have to go through. You definitely have my support.

                            Chris WBS: My lumbar curve is also stiff. Dr. Akbarnia says he will probably get over a 50% correction and hopes to get more. He says the anterior fusion will help him to free things up so he can "tork" (my word) things into place during the posterior one. There are two parts to it, straightening out the curve and de-rotating it. He may get a better correction from the first than the second but he won't know until he does it, and he is hoping for the best. I don't know why some people in the same age group are more flexible than others. I've done a lot of exercising, including yoga, but my curve is still stiff.

                            Berta: Congratulations for being so flexible, at my age too!! What is your secret?

                            Brynn

                            Comment


                            • #59
                              Wow, I feel like I am getting virtual hugs from all of you - thank you so much!!

                              Theresa - thank you for your post. I now know I am not alone in having so many surgeries in such a short time. Sounds like you and I belong to a club that we didn't want to join! I am having surgery exactly one week before you so I will pray and hope that we both have incredibly successful outcomes.
                              FeliciaFeliciaFelicia
                              10/24/00 posterior fusion T4-L4 at age 57
                              8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
                              5/14/07 posterior revision with fusion to sacrum
                              2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
                              3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

                              Comment


                              • #60
                                Brynn,
                                I have always had a flexible spine and hips, since I was young and did some gymnastics with backbends, etc. Basically, I think one's initial flexibility is inherited and then if you keep it up with your personal type exercise, that helps.
                                As an "older" adult, when doing pilates, etc. I noticed I could bend further than many, such as in certain stretching positions, etc. I had lost much of the bending ability I had as a teen though. I was secretly hoping that my flexibility would help in my surgery, and I guess it did. My bending x-rays also showed it. (now, my whole flexible thing is in the past for sure, but worth it, I hope!)
                                I know you are going "nuts" trying to decide what to do about how far to fuse. Like I said, I will never know the difference. BUT, I do remember that even when my doctor was only going to fuse me from T11 (let my upper curve be), he was still going to go to the sacrum. At first he said just to L5, since my L5 disc was still in pretty good shape, but then he said in the same consult, that I would almost for sure be back for further surgery since the pressure of the fused part would affect that disc for sure and considering my age. So, as we were talking, he decided it would be much safer and save me the inevitable, to just go to the sacrum. I asked him about the mobility factor and he said I would be fine and there wouldn't be much difference. (????) Plus, Brynn, he may have been taking into consideration the degree of my curves, which were more than yours. (not sure if that's a factor, but you may want to find out?)
                                What to do!!?? But in the end, I would do whatever he said was best for me, so I do agree to do what your surgeon says, but study up, like you are!
                                Have you read "The Scoliosis Sourcebook"? It's a good one, not that I see anything that directly addresses this subject.
                                Good luck on you decision!
                                Berta in Hawaii

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