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Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

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  • Dearest Susan,

    I have been beyond busy this week with work/kids/visiting relatives, but I just got caught up on your posts… I never made it to the two year mark after my original surgery either, and it was incredibly difficult to mentally cope with everything in recovery being reset to zero. Fast forward to now where I am 2.5 years post revision, and in October it will be 4 years since my original surgery. I made so many improvements after the 2 year mark! I still feel that I am making improvements in ability to move and other things. I took tylenol twice a day every day at the two year mark, and I maybe take tylenol 3 times a week now, usually in the evenings after a long day.

    As far as how it happens to us to be "the one" to have the rare complication, at work we refer to it as "the friends and family" plan (remember those dumb old cell phone commercials?). I am a hospital nurse and so many of my coworkers and their families have had unusually bad things happen to them medically. It seems like the bad things happen more often to the nurses and their families! My point anyway is it is apparently random and we never give a thought to rare complications until one happens to us or someone we know. I simply do not believe we are chosen and that this stuff happens for a reason. My beliefs go along the lines of "shit happens." Just my two cents worth here!

    Take care and thanks for keeping us posted. Your fan club is following along.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

    Comment


    • Hi Susan!

      I'm glad you'll be going home soon!

      Please tell me what PJF & PJK stand for. I tried to search the internet, but got a bunch of jibberish! I'll be having my scoliosis surgery soon & there'll be a procedure to try to correct kyphosis, so I'm curious.

      Praying for lots of improvement & strength as you adapt to your new normal at home - May your progress increase your independence!

      I have learned a lot from you. I sincerely appreciate your posts AND your sense of humor!
      Peg
      61 yrs old
      75 degree lumbar curve with thoracic kyphosis
      T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
      Working on healing in Columbus, Ohio!

      Comment


      • PJK: proximal junctional kyphosis
        PJF: proximal junctional failure
        Gayle, age 50
        Oct 2010 fusion T8-sacrum w/ pelvic fixation
        Feb 2012 lumbar revision for broken rods @ L2-3-4
        Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


        mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
        2010 VBS Dr Luhmann Shriners St Louis
        2017 curves stable/skeletely mature

        also mom of Torrey, 12 y/o son, 16* T, stable

        Comment


        • Thanks, Gayle!
          Peg
          61 yrs old
          75 degree lumbar curve with thoracic kyphosis
          T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
          Working on healing in Columbus, Ohio!

          Comment


          • Susan--I feel like I've been reading a drama catching up with your experience but always your courage and sense of humor comes through. I don't know how you do it! Hope you are done with setbacks and there is smoother sailing (and walking!) ahead. Many prayers and positive thoughts for you. Janet
            Janet

            61 years old--57 for surgery

            Diagnosed in 1965 at age of 13--no brace
            Thoracic Curve: 96 degrees to 35 degrees
            Lumbar Curve: 63 degrees to 5 degrees
            Surgery with Dr. Lenke in St. Louis--March 30, 2009
            T-2 to Pelvis, and hopefully all posterior procedure.

            All was posterior along with 2 cages and 6 osteotomies.

            Comment


            • Home tomorrow!

              Home tomorrow! I started this journey on August 7th when I walked into my Internal Med MD office with leg weakness. The summer has passed me by. Bummer. I can walk 75 feet with a walker and spotter. I cannot get up from the ground if I fall, so I guess that I will not plan to fall. I practiced and practiced, but my legs are too weak when I have them folded under me.

              Again, I start the "two year plan". I plan to work hard to get back to the "old Susan". I miss her. I have my 6 week appointment with my spinal surgeon tomorrow. I have a few questions for him, mainly how to prevent a misplaced screw in the future. Screws that indent the spinal cord can't be good.

              Thanks everyone for your support.

              Susan.....in a rad wheelchair
              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


              • hi Susan
                so that means you are meeting with surgeon who did your
                emergency surgery....not with Dr Hu....yes?

                i hope you make progress every day....bit by bit, small tiny
                steps, leaps and bounds, miniscule little bits of progress...
                any old kind of progress....just so it is going in the right
                direction....and slow CAREFUL steps forward at home.

                wishing you only the best....
                jess...and Sparky

                Comment


                • Susan,
                  I have had you on my mind and in my prayers. Going home is a positive thing. Means you are gaining some strength. Take it slow and don't get discouraged.

                  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


                  • Susan - that is great progress! It will be so nice to be at home again!!! I sure am praying for your safety and continued progress. Just remember, as you said, it's baby steps that will get you "there". Do you have a plan in case you do fall? Is someone with you or do you need one of those medical alert buttons that you wear? Just in case. You are so strong and determined that you will build yourself up, even though it will take time and work. And we are all rooting for you. Cyber hugs and love, Susie
                    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


                    • I hope your journey home went well. How was your Dr visit? Glad you got to go home .
                      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


                      • Hi Susan,

                        Just wanted to chime in that I am thinking of you as well and very happy to hear you're heading home. I'm sure being home will help your healing process.

                        Please keep us posted. Maybe if you have Netflix or Amazon you can get into some good distracting tv for the down times...
                        Surgery Jan 6, 2014 at 38 yrs
                        Posterior Fusion T10-L4, osteotomy 1 lev.
                        Pre op-Thoracolumbar Curve-50 degrees

                        Comment


                        • hi Susan
                          thinking of you at home...must feel good to be back home,
                          even though you won't have the hospital staff around you...

                          i hope therapists....OT, PT, etc....are sent to your home and
                          that you do not have to travel anywhere for that...

                          wishing you healing days, restful nites, progress towards your
                          goals(no matter slow or fast, just progress), and better days to come...

                          jess...and Sparky

                          Comment


                          • Susan

                            Your message box is full.
                            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


                            • Hi Susan,

                              Best wishes for your continued recovery at home. You've come a long way since August 7th.
                              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


                              • Susan, glad you are home again. You have been through so much, I know your recovery is slower then you hoped for.
                                Wishing you all the best like every one else on the forum.
                                ((Hugs))
                                Marianne
                                rotoscoliosis, subluxation and spinal stenosis
                                Surgery April 15, 2015 at age 67
                                T11-L5
                                Decompression with multiple discectomies
                                Concord cages @ L2-3, L3-4, L4-5
                                Osteotomies and local bone grafting
                                Revision Feb.22, 2018
                                Replaced rods
                                Took out L5 disk to free up nerves
                                Used BPM to help with fusing
                                Fused T10-S1 with screws in pelvis

                                Comment

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