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

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  • Thank you all for your kind words. I find my journey through life challenging, yet I have no choice but to keep trying to get into the mainstream of life. My brother said that he thought that I was "so calm" when he saw me during my hospitalization for evaluation of my paraplegia. He did not see me when I woke up at 0700 to the phlebotomist wanting to draw my blood when I discovered that neither of my legs moved at all. I became hysterical crying and sobbing in distress that things had deteriorated to this point before the eyes of the many doctors that somehow could not figure out what was happening. How could so many so intelligent people not be able to figure this out? I remember grabbing the hand of one of the doctors and asking him to come back because, "We need to figure this out!". My son remembers me in the first nursing home as my paralysis was not improving saying that we would somehow, "make this work", that we would figure out what to do to help me walk.

    And now, a year later, I am walking some with crutches and using the wheelchair at other times. The tightness around my abdomen, my crutches, leg weakness, I could go on an on are constant reminders of what was as well as what I still need to do to get into the mainstream of life. I try not to dwell on the "shoulda, coulda, woulda" which would be an easy retreat for me, but not useful for moving forward. I have visited there over and over again in the past year recreating possible scenarios and possible interventions with more favorable outcomes.

    The past 2 weeks and this week are difficult for me as I am on the one year anniversary of an ill-fated month from 24 July to 20 August. I visited my primary MD last week for my annual Medicare wellness visit, and I must admit a little PTSD in the clinic as I relived my ill-fated entry into 2 weeks of spinal cord injury. I find myself looking at the date on my watch and wanting to go forward to 20 August when I had emergency surgery with Dr. Hiratzka and then began my journey through rehab into my regaining some of my life that I have lost. There is a lot more of life for me to grab and embrace.

    Susan
    Last edited by susancook; 08-10-2015, 12:44 AM.
    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


    • You are one remarkable lady. I can only imagine what the anniversary date brings to your well being. Hopefully the date will make a great improvement this year. Take care my friend
      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


      • I think most of us can't even imagine the terror of not being able to move our legs. I hope you eventually start to forget those moments.

        ---Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • Originally posted by LindaRacine View Post
          I think most of us can't even imagine the terror of not being able to move our legs. I hope you eventually start to forget those moments.

          ---Linda
          Fortunately, paraplegia from instrumentation problems/loose screws is quite rare. While the hours of paralysis were terrifying, the most frustrating/scary part was the inability of medical persons to find the reason for the abrupt change.

          Forget? I will never forget those hours and time spent in the hospital and nursing home last summer. Yes, the memory is fading as I progressively gain some strength and ability to ambulate with crutches.

          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


          • Hi Susan, I just read this entire thread and want to tell you how sorry I am for all you have been through. I thought I read on another thread you have a broken iliac screw. I hope I got this right. If I do and you do have a broken screw, did they find the cause and are they going to remove it? I am so happy you shared your journey with us. I appreciate the honesty and feel this is the kind of thing people need to read when researching if they should have surgery. I think it's pretty clear, we will never be perfect! A revision may help one symptom, but can cause further problems in other area. We all have scoliosis and unless we have had our first surgery in the last few years with the current updated rods and we are under 30, we are all going to be imperfect for life. It's not logical to believe we will come out like a new person. I just wish I could give you a great big hug Scolii sister. You are my true hero.

            Comment


            • Originally posted by Jamie1955 View Post
              Hi Susan, I just read this entire thread and want to tell you how sorry I am for all you have been through. I thought I read on another thread you have a broken iliac screw. I hope I got this right. If I do and you do have a broken screw, did they find the cause and are they going to remove it? I am so happy you shared your journey with us. I appreciate the honesty and feel this is the kind of thing people need to read when researching if they should have surgery. I think it's pretty clear, we will never be perfect! A revision may help one symptom, but can cause further problems in other area. We all have scoliosis and unless we have had our first surgery in the last few years with the current updated rods and we are under 30, we are all going to be imperfect for life. It's not logical to believe we will come out like a new person. I just wish I could give you a great big hug Scolii sister. You are my true hero.
              Jamie: You are very sweet to call me your hero, but I am just a scoliosis/degenerative disc surgery survivor like you. My usual style in life is to be fairly transparent and self-disclosing. I am happy that you found that my journey had helpful information. Yes, I did have a broken pelvic anchor, but Dr. Hart says that it probably is not significant since so far, I do not appear to have any problems with it.

              When I had my spinal cord injury, I thought that I was everyone's biggest nightmare. Yes, it is a very rare occurrence, fortunately....but so many others on the forum have other problems that have imposed other limitations on their lives. I remember saying to Irina that I was glad that we were not on the forum of people that had a second surgery.....and then, it happened and I am there!

              I am now dealing with sacral "tightening" that increases when I walk with crutches. I had an SI joint injection last week which did not help so far. Bummer. My Pain Management doctor, Dr. Grace Chen said that she had, "other procedures to do if this one does not work". Hmmmmm...........

              Take care, 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


              • Susan,

                I hope that Life starts getting better for you

                Melissa
                Melissa

                Fused from C2 - sacrum 7/2011

                April 21, 2020- another broken rod surgery

                Comment


                • I had a replacement of my broken Inter-Stim generator wire [R buttocks, ??? TMI] yesterday under conscious sedation. In case you have not read the volumes before this, the I-S is implanted in the buttocks and a wire is inserted in S3 space. It is supposed to help with incontinence which occurred after my spinal cord injury last summer.

                  Here's hoping that I do not break anything else!

                  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


                  • Hope it helps
                    Melissa

                    Fused from C2 - sacrum 7/2011

                    April 21, 2020- another broken rod surgery

                    Comment


                    • Praying that this resolves that problem and that YES, you do not break anything else! Love and hugs, 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


                      • Hi Susan,I hope all went well. You are in my prayers. It has been a challenging year for you. I am sending gentle hugs
                        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!
                          Sending prayers for NO more breaks! Think of you, often.
                          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

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