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

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  • Haven't heard from you for a while , but that's understandable. Just stopped by to wish you a speedy recovery that gives you your legs back!!! I can only say that you've had your share of problems!!!
    My thoughts and prayers will be with you~~~sending good vibes your way! Warmly, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

    Comment


    • Susan I hope you are better
      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


      • Susan,

        I hope that you are doing better

        Melissa
        Melissa

        Fused from C2 - sacrum 7/2011

        April 21, 2020- another broken rod surgery

        Comment


        • Susan,
          We are all thinking about you and hope to hear from you soon. I hope things are looking up for you!
          Karen

          Surgery-Jan. 5, 2011-Dr. Lenke
          Fusion T-4-sacrum-2 cages/5 osteotomies
          70 degree thoracolumbar corrected to 25
          Rib Hump-GONE!
          Age-60 at the time of surgery
          Now 66
          Avid Golfer & Tap Dancer
          Retired Kdgn. Teacher

          See photobucket link for:
          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
          Before and After Picture of back 1/7/11
          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
          http://s1119.photobucket.com/albums/k630/pottoff2/

          Comment


          • Got a few texts from Susan. She is doing better, legs are moving, but weak. Hope for continued improvement for her.
            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


            • Thanks for the update Irina...

              There are many of us that are concerned and thinking about Susan. I hope she gains strength quickly.....

              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


              • Praying for you Susan!

                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


                • Thanks for letting us know. I was really worried
                  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


                  • Thanks everyone for your support. I am at the Rehabilitation Institute of Oregon or RIO which is known for quality intensive therapy.

                    Can't remember what I said previously, but my spine surgeon said that my problem was from " proximal junction failure with spinal cord injury" and "Hardware removal T3-T5, re-instrumentation And revision T3-T6". The screws were pulled out since the cervical area's kyphosis constantly exerted a pull on the upper screws. He removed the screws and a hook. He said that his heart was racing as he removed the first screw which "indented the spinal cord" and the spinal cord then filled in the space. I told him that the moment was a great You Tube video and did he capture it on film, but he said that he was just working hard to bring down his heart rate at that moment. He replaced the screws and redid a few more and added 2 or so. He added some bone matter. I asked him if the findings at the surgery explained my symptoms and he said, "100 %". I had reviewed the hospitalization summary of my first hospitalization and the conclusion of the neurology department was that my symptoms were psychosomatic or psychogenic. I was immediately depressed when I read that and had an evening of really being down. The spinal surgeon's comments made me feel vindicated, but I am really mad. The surgeon said that there would be a formal case review at the hospital. I remain pissed and need to process it. I am spending too much energy being pissed and not on rehab.

                    I can move my feet and legs some. I cried last night when I woke up and could not wait for the aide to sling me up on an electronic carrier to the commode and was incontinent. I could not get up to reach my tissues, so i had to blow mt nose on my sheets. i felt even more helpless and crappy. i felt like running away because I want to be outside in summer activities. I realized that I could not even walk, so I could not run away. That made me cry more. They offer psychological counseling here and I need help. The prospect of being here for a few months is very depressing. My future volunteering to do medical work in developing nations appears to be over. Many tears over that thought.

                    So, I probably will not write on the forum much. I am considering switching to the thread "I am sorry that I had spine surgery", but maybe it is too soon to know the final outcome.

                    Susan
                    Last edited by susancook; 09-02-2014, 10:01 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


                    • We all are on your side. We do miss you. Just take care of yourself and we will catch up with you when you can.
                      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


                      • Susan - I am so relieved that the surgeon was able to remove the screw(s) without damaging the spinal cord. Yes, you have every right to be very angry that they did not listen to you to begin with. I am sure someone or several people will be accountable for this gross negligence. I am so sorry about the "ifs" that may not come to pass, but many times other opportunities open up. You have a lot to process now-- anger is like grief and you need to go through that process, so seek the help you need. After awhile, though, don't let it rule your life. You are also full of good thoughts and encouragement to others, and have always looked on the positive. I'll be praying that with time your life will get back to a new and good normal. Hugs, Susie

                        PS -- thanks so much for taking the time to write to all of us and let us know what has happened. We have all been so concerned...
                        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


                        • My heart was racing too reading that psychosomatic description from the first hospital. Susan, sue that first hospital! I know, easier said than done, but may be family members can get the ball rolling?
                          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


                          • dear Susan
                            please...if you spend any time at all on that stupid doctor...please try to remember that doctors who cannot explain what is happening BLAME THE PATIENT and it is only their own incompetence to blame...
                            it happens all the time...happened to me with Lyme...they didn't know what was wrong with me, so they blamed me...instead of themselves or medical science....or the fact that they didn't do the right tests to find the problem...

                            YOU know it was not in any way "psychosomatic"...any good doctor knows it too...please try to not allow the morons to get you down...it happens all too often...to good people who have real medical problems....the doctors who pull that psychosomatic stuff, or who imply the patient is a hypochondriac, should lose their licenses to practice medicine...

                            you are in so many hearts and minds right now with prayers for recovery...
                            hoping and praying time will have you healing until you are 100%.

                            best to you always...
                            jess...and Sparky
                            Last edited by jrnyc; 08-29-2014, 08:54 PM.

                            Comment


                            • Susan, just want to offer my support. Others have given good advice. You have some hard work to do, please know you're in my prayers. You've been so encouraging to others, including me!

                              Peg
                              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 thanks for letting all of us know what is happening. Everyone here has been so worried about you. It is understandable you are angry but don't let it get in the way of your treatment. You have always been so positive and you will get through this as well.
                                Thinking of you,
                                Marianne
                                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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