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"The L5-S1 Question" Is it worth it?

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  • #16
    T3 to Sacrum club

    Tamena, I just read on another thread that you will be fused from T3 to Sacrum. Right? You're among the finest! Our group is a small group of Scoliosis warriors!
    Susan
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

    Comment


    • #17
      Susan,
      You make me laugh. Yes I an going to the sacrum. Didn't want to risk a third surgery later down the road.

      Tamena
      Diagnosed at age 12 with a double major curve

      Braced till age 15

      SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

      Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

      Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

      Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

      Comment


      • #18
        Originally posted by tae_tap View Post
        Susan,
        You make me laugh. Yes I an going to the sacrum. Didn't want to risk a third surgery later down the road.

        Tamena
        You're on the T3 to Sacrum Team! I used to be 5'2" through most of my adult life. Then my pants got longer..... I was 4'11" before surgery and 5'2" afterwards. AWESOME!
        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
        2018: Removal L4,5 screw
        2021: Removal T1 screw & rod

        Comment


        • #19
          HI ,
          I think when we say we are fused to pelvis--aren't we fused to s1 with pelvic fixation. At least that is what my surgeon says. I call it my bi-pod as it isn't a tripod. It does remind me of how a tripod looks.
          The s1 question--I was never given an option and I do understand not wanting more surgery. But do note that it is hard to sit. I have heard others say the same. I am getting close to 5 years and can only sit minutes at a time. The car is torture. I can't find out how to make it better. I am also fused 3 levels in the neck --so sitting upright totally is the only way if there isn't any neck support. resting back helps the neck but hurts the tailbone--so I stand up and avoid all of that. I actually stand or walk most of the day.
          I am getting a new chair tomorrow--1st ever lounge chair. I am short so it is a small one so I can get out. I am praying that it helps. My feet are tired!
          Good luck on getting ready--I know you have been reading the posts for awhile.
          We are on your side,
          Jackie
          T10-pelvis fusion 12/08
          C5,6,7 fusion 9/10
          T2--T10 fusion 2/11
          C 4-5 fusion 11/14
          Right scapulectomy 6/15
          Right pectoralis major muscle transfer to scapula
          To replace the action of Serratus Anterior muscle 3/16
          Broken neck 9/28/2018
          Emergency surgery posterior fusion C4- T3
          Repeated 11/2018 because rods pulled apart added T2 fusion
          Removal of partial right thoracic hardware 1/2020
          Removal and replacement of C4-T10 hardware with C7 and T 1
          Osteotomy

          Comment


          • #20
            Originally posted by jackieg412 View Post
            HI ,
            I think when we say we are fused to pelvis--aren't we fused to s1 with pelvic fixation. At least that is what my surgeon says. I call it my bi-pod as it isn't a tripod. It does remind me of how a tripod looks.
            The s1 question--I was never given an option and I do understand not wanting more surgery. But do note that it is hard to sit. I have heard others say the same. I am getting close to 5 years and can only sit minutes at a time. The car is torture. I can't find out how to make it better. I am also fused 3 levels in the neck --so sitting upright totally is the only way if there isn't any neck support. resting back helps the neck but hurts the tailbone--so I stand up and avoid all of that. I actually stand or walk most of the day.
            I am getting a new chair tomorrow--1st ever lounge chair. I am short so it is a small one so I can get out. I am praying that it helps. My feet are tired!
            Good luck on getting ready--I know you have been reading the posts for awhile.
            We are on your side,
            Jackie
            I am 7 months out, fused T6 to S1, and can sit for about two hours at a time and then my tailbone starts to ache. A 5-10 minutes break resolves it. I am comfortable sitting on a straight kitchen chair, but can't really sit on anything soft like sofas. I sink in and it's hard on my tailbone. I avoid chairs where I'd have to recline because again, it bothers my tailbone. When I sit, I don't even bother with a back of a chair - sitting straight like a queen is a way to go for me. Right after the surgery, I was told do not sit for more than half-an-hour at a time and I complied most of the time, but would occasionally forget and sit for an hour without much pain. I think we're all different...
            I am stronger than scoliosis, and won't let it rule my life!
            45 years old - diagnosed at age 7
            A/P surgery on March 5/7, 2013 - UCSF

            Comment


            • #21
              Sitting really is not a problem except that my shoulders and upper back get somewhat sore. I prefer chairs with backs and soft backs.....not too short or it is difficult to get up. My tailbone does not get sore, but sitting 2 hours at a time sounds uncomfortable.
              Susan
              Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

              2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
              2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
              2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
              2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
              2018: Removal L4,5 screw
              2021: Removal T1 screw & rod

              Comment


              • #22
                Tamena,

                I discussed this with Dr. Lenke because my L5 was good. He said he generally fuses any patients over 40 to S1 because there is too much deterioration in the lumbar from years of use. That's me--I was 40 at surgery.

                Does Dr. Lenke think there's a chance you could get away with never being fused to S1? If so, I'd go for it. I really think it's a different surgery for the s1 folks. We are handicapped in a sense after surgery. I chose to go ahead and do it because Dr. Lenke said it was a lock I would need an additional surgery within five years, possibly sooner. But if I could have had the chance to never be fused to S1, I'd go with Linda Racine.

                It's not that it's terrible and impossible to live with. No, I can do most everything. It's just that it IS somewhat limiting, and I have young kids and pets and don't like being limited. If you do go to S1, know that it's pretty bad at first, but things start to get much better after 6 months to a year.

                Best,
                Evelyn
                age 48
                80* thoracolumbar; 40* thoracic
                Reduced to ~16* thoracolumbar; ~0* thoracic
                Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                Not "confused" anymore, but don't know how to change my username.

                Comment


                • #23
                  Thanks Evelyn! I am going to go ahead and go all the way because I was told that the probability of having to go back and revise it was very high in the next five years. I am one week till the day of surgery. I go in on the 12th for the central line and then bright and early on the 13th we will begin what I hope to be the final surgery to my new spine. I am ready to get rid of this pain and to move on to the new pain with recovery in sight.

                  Tamena
                  Diagnosed at age 12 with a double major curve

                  Braced till age 15

                  SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

                  Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

                  Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

                  Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

                  Comment


                  • #24
                    I was fused to s1 on the first surgery, but I just wanted to post a comment about putting on underwear or pants---I found out if I put on the left leg first that I can get them on--but right leg first--no way!
                    These are the things that we learn as we go.
                    T10-pelvis fusion 12/08
                    C5,6,7 fusion 9/10
                    T2--T10 fusion 2/11
                    C 4-5 fusion 11/14
                    Right scapulectomy 6/15
                    Right pectoralis major muscle transfer to scapula
                    To replace the action of Serratus Anterior muscle 3/16
                    Broken neck 9/28/2018
                    Emergency surgery posterior fusion C4- T3
                    Repeated 11/2018 because rods pulled apart added T2 fusion
                    Removal of partial right thoracic hardware 1/2020
                    Removal and replacement of C4-T10 hardware with C7 and T 1
                    Osteotomy

                    Comment


                    • #25
                      I agree! I put on the difficult leg first, then the "good" leg.
                      Susan
                      Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                      2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                      2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                      2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                      2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                      2018: Removal L4,5 screw
                      2021: Removal T1 screw & rod

                      Comment

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