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

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  • I don't blame you a bit for being angry. Eventually, you will be back 100 per cent and this will be a horrible nightmare. We are all thankful to gave an update from you. Please feel free to vent.
    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


    • Susan--
      What a horrible ordeal you have been going through. I hadn't been on for ages and had to back up and see what had happened. If it had only been that fast and easy for you. Can't believe the screw situation wasn't figured out sooner. I'm so sorry about all of this and truly hope you will be on the way to recovery very soon.

      Rohrer--
      I didn't see any other more recent posts but see that you have been having lots of difficulties also. Hoping and praying for the best for you both. So glad to see the great support you've both received from our forum people. It's so great to have this during those difficult times. 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


      • Susan, you just take care of your end and we'll keep praying for you on this end. I can't say I know how you feel, as we're all different in how we handle things. But I know fear, I know that hopeless feeling after being through a lot already. I just know that knowledge is a powerful thing.. I hope they are giving you lots of good information and support on how this is all going to get better. Sending warm feelings your way. 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


        • Another day in rehab....

          Improving a millimeter a day....call me a snail.

          Official diagnosis: Proximal Junctional Failure with Spinal Cord Injury

          Surgery: Hardware removal T3 to T5, Reinstrumentation and Revision Fusion from T3 to T6.

          Team meeting yesterday: 5-6 weeks of intensive rehab.

          My favorite parts of being here are the garden on the first floor and the "bowel and bladder programs" for neurogenic evacuation portals (yeehaw).

          Anyone have a good zipper tattoo that I can have done on my back?

          Signing off from rehab,
          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

            Thanks for the update.....good to hear about your improvement. One day at a time.

            I am amazed at how powerful kyphosis is....and it sure did happen up high in your spine.

            The ideas for tattoos are endless....Do you want a full zipper? I will post a few examples later....

            I like this one....(smiley face)

            Ed
            Attached Files
            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


            • Susan,thanks for the update. I miss reading your posts. I am so sorry that this happened. I find myself wondering how this was missed. But I am happy for you that things are improving if only at a ' snails pace' . I am praying that it keeps upward for you. 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


              • Susan,

                I am glad that you have a plan for getting better


                Melissa
                Melissa

                Fused from C2 - sacrum 7/2011

                April 21, 2020- another broken rod surgery

                Comment


                • Susan, glad to see you have not lost your sense of humour!
                  Thinking of you and hoping you will recover from this ordeal soon.
                  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


                  • Thanks everyone for your kind words.

                    Ed, love the tattoo! I am 68 and have never had a tattoo.....but am planning one in honor of my surgeries. Dr. Hu will no doubt frown on it. Too late!

                    Progressed from denial to anger. Awesome progress!

                    Susan....now have 3 rods and will post as soon as I can figure out how to do it!
                    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 you make a full recovery. I'm disturbed to hear that things went wrong and so late in the healing process no less. You have hope of regaining your strength and walking ability. That's great news!

                      For the rest of you, I'm confused. Susan can answer if she's up to it, but who messed up surgery and called her symptoms psychosomatic? Was it Dr. Hu?

                      I've been told the same thing and was "diagnosed" with hypochondriasis. When the psychologist asked me if I knew what psychosomatic meant, I looked at him dumbly and said, "No." I just wanted him to have to explain it. Of course I knew what it meant! Duh. But you all know my REAL diagnosis. I was treated very respectfully by 90% of the doctors at that hospital. It's that one or two that really make me mad!

                      Susan, you focus on getting well first. THEN go after whoever was responsible, unless it was just one of those risk factors. There has to be true negligence. I think the ones who said it was all in your head are the truly negligent ones!

                      gentle (((hugs)))
                      Rohrer01
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • Originally posted by rohrer01 View Post
                        Susan,
                        I hope you make a full recovery. I'm disturbed to hear that things went wrong and so late in the healing process no less. You have hope of regaining your strength and walking ability. That's great news!

                        For the rest of you, I'm confused. Susan can answer if she's up to it, but who messed up surgery and called her symptoms psychosomatic? Was it Dr. Hu?

                        I've been told the same thing and was "diagnosed" with hypochondriasis. When the psychologist asked me if I knew what psychosomatic meant, I looked at him dumbly and said, "No." I just wanted him to have to explain it. Of course I knew what it meant! Duh. But you all know my REAL diagnosis. I was treated very respectfully by 90% of the doctors at that hospital. It's that one or two that really make me mad!

                        Susan, you focus on getting well first. THEN go after whoever was responsible, unless it was just one of those risk factors. There has to be true negligence. I think the ones who said it was all in your head are the truly negligent ones!

                        gentle (((hugs)))
                        Rohrer01
                        Hi Rohrer, nobody messed up the surgery. While Dr. Hu did repair my thoracic kyphosis it created a smaller kyphosis at the top of the repair. I knew it, but the spine was angled so that it misaligned the screws. Nobody's fault that it happened, just bad karma. The fault lies in delayed diagnosis at OHSU in Neurology, not Spine surgery.

                        As soon as I can cut and paste the hospital record detailing my diagnosis of being psychosomatic, I will do so. There is an interesting note that says something like: we discussed the diagnosis of functional leg weakness with Mrs. Cooksey and she commented that she was pleased that we had been able to rule of major causes of leg weakness (no SH.., they were ruling out MS, ALS, Gillian Barre...sorry about the misspelling), she stated that her life was very happy at this time and was dismayed that we could be find a specific diagnosis. Sorry that you went through the same thing that I did. I was having decerebrate spasms when I was moved suddenly....how can you dream that one up as a hypochondriac? If it was functional, then I deserved an Academy Award!

                        Hope that you are finding solutions. Life is a craps shoot.

                        Hugs from rehab, 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


                        • Originally posted by susancook View Post
                          Dr. Hu will no doubt frown on it.
                          You might consider the album cover attached below for a tatoo.....The “Lean into it” album by Mr Big explains everything. I have always thought of the scoliotic spine as a vertebral train wreck. After the wreck, usually the cars are attached and laying in precarious positions. We also have a tendency to “Lean into it” sometimes..... Would be interesting to see what Dr Hu thinks....Its an original for sure, I don’t think any scoli has this one on their back. He he

                          I don’t know if I agree if progressing from denial to anger is progress, maybe it is....I would concentrate on moving past or scaling the anger phase down since it isn’t productive. I “try” not to get angry about anything at all anymore....I know this will be a hard thing, but its necessary. In ALS, there is a bizarre thing that happens to some patients, either its extreme depression or extreme happiness. One day I went to the hospital and my dad had around 30 wheelchair bound patients around him and he was leading the jokes....The admin nurses looked with complete amazement at what was happening, it was comedy central, a Dean Martin roast with people laughing to extremes.......It was everyone’s release.... One of the big guys had this oversize very heavy duty wheelchair, and you just don’t think about these things but my dad pointed out that it had a Ford F-350 rear axle on his chair.......I BTW was astonished myself just like the nurses, and wasn’t laughing much.....it was a psychological learning curve or reaction that I was wondering about, but we truly did have a lot of fun in-between the tears.

                          I wonder why our vertebral bodies either rotate in scoliosis, or in kyphosis collapse into wedges as if they are made of styrofoam......and with this being the case, attaching to vertebrae becomes a challenging thing. Driving pedicle screws into styrofoam like cancellous bone, can lead to an unpredictable situation.

                          I want you to know that I’m an RV’er, and camp with my bus when I can.....You might find this blog interesting......This lady likes to travel and go places.....
                          http://rollinginarv-wheelchairtravel...ngs-to-do.html

                          I use a laptop and lay all files on my desktop to keep things simple to find. To attach files on NSF, look for “Manage attachments”
                          Click "Add Files"
                          Click "Select files", (find on desktop)
                          Click "Upload files",(wait for icon to appear, lower left)
                          Click "Done"


                          Ed
                          Attached Files
                          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


                          • Good to hear things are improving Susan, albeit slowly.

                            We're "hanging in there" with you.
                            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,
                              I think we ought to go after the psychologists(Ph.D. the D stands for Dumb) or maybe doctor in your case?! It's because of them that we have had delayed treatments! Although, I'd have a hard time proving delayed treatment in my case... I'd still like to see the jerk fired! His croney was either fired or forced to relocate. The only one there that liked the man was that Ph.Dummy!
                              Be happy!
                              We don't know what tomorrow brings,
                              but we are alive today!

                              Comment


                              • Originally posted by rohrer01 View Post
                                Susan,
                                I think we ought to go after the psychologists(Ph.D. the D stands for Dumb) or maybe doctor in your case?! It's because of them that we have had delayed treatments! Although, I'd have a hard time proving delayed treatment in my case... I'd still like to see the jerk fired! His croney was either fired or forced to relocate. The only one there that liked the man was that Ph.Dummy!
                                Rohrer, I have decided that I would be wasting energy on anger and blame that I need for healing. There was about 2 weeks that I wanted to get even. My son said, "mom, if you are expecting an apology, I doubt that you will get it". On so many levels, they were wrong. Maybe arrogant, I do not know. Do I want vindication? Maybe. Do I think that the delay in diagnosis might have cost me my ability to walk? I do not know and it is not important. I need to move on. The best that I can hope for is that this does not happen again to me. I am resigned to my future that includes a wheelchair. I hope that I can walk some....standing is a challenge for me right now. Sometimes life is just plain crappy, and that time is now.
                                S.
                                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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