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  • Surgery in a couple of weeks, quietly panicking.

    Hi all ... I know this is going to be rough, but it's more than I expected.
    I was only supposed to have a TLIF (translaminar interbody fusion) of L5-S1, and had psyched myself up for that. At my pre-op visit, my upper right back was spasming badly, and the doctor was concerned that the thoracic curve was degnerating as well. He recommended fixing the whole thing, T2-pelvis, but left it up to me to decide.

    When the spasms are bad, I can't stand upright and can barely walk. This whole situation only started in December with at twinge, and has deteriorated quickly since then, making it impossible to stand for more than a minute or two or do more strenuous housework (darn it!). Plus I get to miss out on all the fun activities like football games and road trips. And I can't run anymore at all.

    I'm pretty anxious about all this, especially the limitations after surgery. I've always been pretty flexible, but that's all going to change, and trying to imagine what it will be like is impossible. I want to do the right thing, but what IS the right thing? How do I get past thinking about the instrumentation as an alien parasite (hooks! screws!) that will be implanted in my body permanently, when I should think of it as a framework that is going to make my back whole and strong again?

    I need some experienced advice and opinions please! Help!
    Juliet, age 57
    37˚ lumbar and 35˚ thoracic with rotation
    Diagnosed at age 11 and untreated.
    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
    Surgery on 10/26/10
    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
    University Medical Center @ Brackenridge Hospital.
    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

  • #2
    Kitty, the hardware becomes part of you. I don't think of it as an alien anymore, and haven't really for a long time. They're mine, and they did a great job for me when I was fusing.

    Flexibility - yes, you do lose some flexibility. But at 18 months post op, I can do anything I want except lift very heavy objects (dr's orders) and run (also dr's orders - to save those top few vertebra.) I have no pain and I can stand as long as I want. I am fused T4 - pelvis.

    You learn to do certain things differently. Your knees get more work from picking things up off the floor and getting in and out of a sedan is awkward, but it isn't a big deal.

    Apart from that life goes on as if you never had scoliosis, and you'll be taller and straighter, as a bonus.

    I know these last few weeks are pretty cruel, but before you know it, the worst will be over and you'll be on the road to recovery. In hindsight it goes really quickly! The waiting is the worst. Wishing you the best possible outcome and a nice, smooth recovery.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

    Comment


    • #3
      Hi Kitty,

      Yes, the weeks leading up to the surgery are pretty daunting. It helped me to get a lot of exercise and stay as busy as possible, and then I got pretty calm a few days beforehand -- as though I finally surrendered to the whole idea. That last-minute calm seems to happen to most people, from what I've observed.

      I also worried about the permanence of the "alien" rods and screws, and truthfully, it took me about a year to really trust my new back and to feel like I'd made friends with it. At this point, it seems totally normal and I rarely dwell on it. And even though I did lose a bit of flexibility, I've gotten totally used to doing things a different way -- squatting instead of stooping and being careful to bend from the hips.

      Best of luck to you!
      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


      • #4
        Hi Kitty - This is the hardest part. I've said that before to others after DD # 1's surgery, and just weeks from now DD #2 will be having surgery. I find myself here on this forum more and more as the time gets closer. I gathered knowledge, experience, and piece of mind from reading through the posts. There is such a wealth of experience here - some good, some difficult, but all helped me as a Mom deal with my girls facing this surgery.

        It's really tough when the game plan changes at the last minute. Sorry you are going through this.

        Dee
        Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
        Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
        Jes (20yo) T 3 -> L 3 w/ Kyphosis

        Comment


        • #5
          Hi.

          I don't know what I'm talking about but were it me, if I was to allow a T2-pelvis fusion on a double major in the mid 30*s, I would need a written guarantee that the spasms and pain would stop for a damn long time if not for life.

          Did your surgeon think that long fusion would stop your spasms/pain? How sure was he? Is there evidence of progression?

          Just asking.

          Remember, I don't know what I'm talking about and I am probably missing a boatload of relevant facts here.

          Good luck.
          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


          • #6
            So I'm not a weirdo!

            Oh, thank you!
            It's comforting that I'm not the only one who has had thought about the alien mechanical robot parasite implantation scenario. The idea of being taller than I've ever been before - reclaiming those two inches that are MINE! - is great. And never being a stooped little old lady. I can deal with bending at the knees (practicing a lot now) and I was really impressed with Titaniumed's bending and twisting photos.

            Dr. Geck will do whatever I decide. I'm 57 years old, and figure I don't have all that many years left to go through multiple surgeries on what WILL be a progressive problem at my age. I've gone from being extremely active to barely being able to walk at times, and it's pretty depressing. This is the first year I've felt physically "old" and I don't like one bit! Yes, I have concerns about increasing the scope of the procedure. What more can I say?

            I had another MRI Friday, and have another consult with the doctor about the procedure this week. The doc had me in a month of physical therapy to find the cause of the spasms, which move from the right lumbar area to the apex of the thoracic curve. At first he thought that correcting the lumbar curve would modify the upper curve, but because of the pain I've been having, he suspects the upper curve is deteriorating -- and that if he only straightens the lumbar curve, I'll still be in pain from the thoracic.

            There are some bulging discs in several areas of stress, and the stress that caused the L5 degeneration is expected to just move up to the next level, and the next, and so on until the whole thing gives out. I've been to three surgeons who told me the same thing about progression, and all offered to just fix the lowest and wait to do the rest later, or fix the entire thing now.

            Rather than guaranteeing me that I'll be pain free with the more extensive surgery (I mean, what doctor can guarantee that?), they've ALL guaranteed that I'll need more surgery later, and that the odds are I'll still be in pain with the LESS extensive surgery.

            So that's the situation.
            I don't know anyone else but you all who has been through it, and having your reassurances and perspectives is everything to me right now!
            Juliet, age 57
            37˚ lumbar and 35˚ thoracic with rotation
            Diagnosed at age 11 and untreated.
            Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
            Surgery on 10/26/10
            Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
            University Medical Center @ Brackenridge Hospital.
            Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

            Comment


            • #7
              Okay I see those points.

              I just wonder how common it is to have those issues and that amount of spasming with a mid 30*s double major. I know that question is irrelevant to you but the question is out there as to what simply having a curve even in the mid 30*s does to the spine even if it doesn't progress. Hopefully your case is not typical but we can't know that.

              I think 100% of parents think that if their kid can get to skeletal maturity at a sub-surgical angle like yours then they will never need fusion. I certainly did! I just wonder if that paradigm needs revisiting or if cases like yours are completely unusual. Have your surgeons said anything about the relative rarity of you needing a long fusion for ancillary problems in a clearly sub-surgical curve?
              Last edited by Pooka1; 10-10-2010, 09:14 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


              • #8
                Personally, I'm uncomfortable with the surgeon having YOU make the decision about how far to fuse. I would really press him for a firm recommendation either way -- he's the one with the expertise, after all. It's crucial that you go into this thing trusting your surgeon 100 percent.
                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


                • #9
                  Welcome Bad Kitty

                  I had a 34# cat named Bad Kitty...yes, his diet was out of control. He was pretty demanding, especially if his food ran out. It wasn’t my fault. lol

                  Maybe Linda will chime in, but at UCSF, they like to just "correct the problem" and try smaller surgeries like what your surgeon "is" or "was" proposing. A single level fusion is way easier to recover from than a full fusion.

                  You don’t have much time to decide on the most difficult decision of your life. I personally would ask for more time to ponder your decision, your surgeon will understand. If you are leaning towards a full fusion, fusing that one level doesn’t make sense.

                  All your ducks need to be in a row.....
                  Keep reading and posting

                  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


                  • #10
                    My surgeon's reaction was the opposite ... he originally thought I DIDN'T need a long fusion. He said it was common for the L5-S1 disc to give out under the stress of supporting the thoracic curve, but it appeared to him that I was "one out of a hundred patients" (his words) who could get away with the TLIF because my thoracic spine was so flexible. When the pain spread up my back he was disappointed, but not surprised. In his experience, when the lower curve starts to cause degeneration, the upper curve usually does too. He said he sees this happen eventually, even in cases of sub-surgical angles like mine, and almost always in stable scoliosis that hasn't been followed over the years. His fear was fixing the lumbar problem, but leaving me with the unsatisfactory result of continued pain in the thoracic spine and needing a second procedure.

                    I hope that the latest MRI shows more of what's going on in the thoracic spine. It's hard to get used to the idea of the long procedure when I was already dreading the one that now seems insignificant in comparison. I should find something out on Wednesday - crossed fingers! - but the previous MRI didn't look too promising. It doesn't help that I'm one of those little, small-boned skinny people with mild osteoarthritis, whose bones tend to become brittle as they get older. Bring on the calcium and vitamin D!
                    Juliet, age 57
                    37˚ lumbar and 35˚ thoracic with rotation
                    Diagnosed at age 11 and untreated.
                    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
                    Surgery on 10/26/10
                    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
                    University Medical Center @ Brackenridge Hospital.
                    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

                    Comment


                    • #11
                      The surgeon would give me as much time as I need to make up my mind, but I'm under pressure with my insurance "year" starting over on November 1st, with another $5000 deductible (I met the this year's in March). I only have a $1000 PT benefit, and I think I'll need that $5000 for PT. Plus I'm not working now (because I can't stand up half the time), so I'm running on savings, hoping it lasts until I can work again. My ex is helping me out right now.

                      As for the doctor telling me to make the decision, I'm also not happy with that. It's as if they have all deflected whatever blame there might be for the outcome, since it would be what I decided to do. I don't think that's actually what's going on, but none of the doctors I've seen are sure of the outcome, since my situation is something of a crapshoot. One thing they've ALL agreed on is that I'll need a long fusion eventually, say, in five or six years at the most.
                      Juliet, age 57
                      37˚ lumbar and 35˚ thoracic with rotation
                      Diagnosed at age 11 and untreated.
                      Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
                      Surgery on 10/26/10
                      Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
                      University Medical Center @ Brackenridge Hospital.
                      Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

                      Comment


                      • #12
                        Originally posted by BadKitty View Post
                        He said it was common for the L5-S1 disc to give out under the stress of supporting the thoracic curve,
                        So does that mean anyone with a T curve has this in their future? Even sub-surgical T curves?

                        In his experience, when the lower curve starts to cause degeneration, the upper curve usually does too. He said he sees this happen eventually, even in cases of sub-surgical angles like mine, and almost always in stable scoliosis that hasn't been followed over the years. His fear was fixing the lumbar problem, but leaving me with the unsatisfactory result of continued pain in the thoracic spine and needing a second procedure.
                        Okay I have to wonder exactly how many pediatric orthopedic surgeons are telling parents this. I believe the number is ZERO. I feel silly in hindsight focusing on that one magic angle of 50* and hoping to be under that at maturity. That may hold the progression (not always!) but it doesn't appear to stop the deterioration from simply having even a sub-surgical curve. And your surgeon has now said so in so many words. And we have seen this in some of the testimonials.

                        If this turns out to be a commonplace of unfused sub-surgical curves then we have to take distal ALD out of the column of complications specific to fusion in the lumbar as it is going to occur in unfused curves also it seems.

                        I wish you luck. You will make the right decision.
                        Last edited by Pooka1; 10-11-2010, 05:57 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
                          By the way, can I ask you if you ever wore a brace?
                          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


                          • #14
                            My surgeon was originally going to fuse me T3 to pelvis. He would take out my existing rods at L4-S1 and reuse the pedicle screws there to tie in with the new rods all the way down. After reviewing my films over a few weeks and getting a CT of my lumbar he decided to just fuse T3-L1. Said my lumbar looked good and my discs at L2 and 3 were good. I guess I'm still at risk for needing something there later, but hopefully not and I can preserve those discs. I guess there are pros and cons to both; going for the full fusion or preserving what you can.
                            Age 56
                            Wore a Milwaukee Brace for 3 years in hs
                            Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
                            Thoracic 68
                            Surgery Aug 31, 2010 T3 to L1
                            Dr Bridwell St Louis
                            http://www.scoliosis.org/forum/attac...1&d=1289881696

                            Comment


                            • #15
                              "One thing they've ALL agreed on is that I'll need a long fusion eventually, say, in five or six years at the most.

                              I think I would be guided by this. I would also do anything to avoid another surgery, preferring to fix the entire problem in one go.

                              Originally my surgeon said T5 - Sacrum but went T4-pelvis. I'm happy he did, because I feel it lessens my chances of needing further surgery in future which is important to me.

                              It's a lot to get your head around. I actually don't find much fault with him leaving the decision to you provided he's given you all the information you need to make the decision. Because sometimes there ARE choices. You are the one who knows how much of a risk you want to take for possible future surgeries.
                              Surgery March 3, 2009 at almost 58, now 63.
                              Dr. Askin, Brisbane, Australia
                              T4-Pelvis, Posterior only
                              Osteotomies and Laminectomies
                              Was 68 degrees, now 22 and pain free

                              Comment

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