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

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  • Originally posted by susancook View Post
    I was laughing so hard that I don't remember if I got the wax job or not? Oh, you're talking about a Brazilian wax.
    No, I was thinking more like Blue Coral.

    Susan, what do you think is going on?

    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


    • Originally posted by titaniumed View Post
      No, I was thinking more like Blue Coral.

      Susan, what do you think is going on?

      Ed
      Tis a mystery to me! Had tests today, but results have not come back yet....to me at least. The spinal tap was painless after small lidocaine injection. Lady Neurologist w/ "Better hair day" came by late today. She said that "the two teams (IM and Neuro) would get together and duke it out tomorrow and then all come in and discuss it with me and that, "nerve conduction studies will probably be ordered". Yikes, had those once before, sheer torture! If you ever need a sedative, that's it, but of course you need to be awake and participatory ;+[.

      No real pain, good sensory (although slightly impaired), use a walker and are a fall risk (cute sign outside my door with a fall leaf on it) and can only shuffle a few steps at best using lots of arm strength. The "paraplegic moment" (I would insert Jaws music here if I knew how to do that) forget moment, it was a few hours were terrifying. Visions of well accessorized armless wheelchairs danced in my head. Certainly rapid onset was amazing. A week ago today, I walked...well with some unsteadiness....around downtown Portland for a half hour. No fall, no bad water in Guinea, no new contaminated suppliments.....

      I am too old for MS although the onset is usually not that dramatic. My guess is some spinal cord compromise or viral myositis. Maybe we could have a contest on line here to guess the diagnosis.
      Unfortunately, my symptoms do not fit into too many categories, none discreetly. So, please submit your guesses.

      I will be going to a Rehab facility as I truly cannot walk without 2 attendants under my arms and a walker and a very short distance. At that, I still collapse sometimes when my knees buckle.
      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 am wishing you well and I hope all of this is behind you soon. I have no real ideas to suggest but I had a friend's daughter with similar symptoms as yours and had Gilligan Barre .with treatment and time she did recover. I pray that you will also. I may have spelled that wrong but keep us posted. 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 so sorry to read you are in Hospital again, and having such difficulties with your legs.
          I had not been on line for a few days and was shocked to read this last night, you were doing so well.
          I am happy to read you are still glad you had the surgery and hope you will get some good news today.
          My thoughts are with you and am wishing you well.
          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


          • Susan, I also am so concerned for you and am praying that this can be diagnosed and taken care of soon. I have no suggestions other than it sounds like something is preventing the "message" from your brain to your legs... Please keep us informed as you find out more. You are such a strong person, but I am sure that is very difficult during this difficult and frightening time. 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


            • Susan,

              Please keep us informed . I was so sorry to read what is going on

              I will keep on praying

              God bless

              Melissa
              Melissa

              Fused from C2 - sacrum 7/2011

              April 21, 2020- another broken rod surgery

              Comment


              • Hi Susan,

                My thoughts and prayers are with you. Skip and I are very concerned, along with everyone else on this forum. If I were in your shoes, I am not so sure that I would have stopped crying after an half box of Kleenex. You are so entitled to have a pity party, and very lucky to have a friend that brings pastry and does leg messages. Do you have your cell phone with you? If so, and you are up for it, I will call you this weekend. Wishing you a speedy recovery.

                Love to you and hubby,

                Libby and Skip

                Comment


                • Jackie and I are on the same page....I also knew someone with Guillain Barre.....and they also recovered....

                  Hang in there Susan, Its going to be all right......this is just a temporary setback.

                  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


                  • Temporary paralysis of fibromyalgia

                    Thanks everyone for your kind words.

                    Bottom line: all of the tests (CT with contrast; spinal tap; various tests on spinal fluid; MRI; EMG, lots pf blood work) done were not abnormal to explain my symptoms

                    "Best guess of the Attending": temporary paralysis of fibromyalgia

                    Other findings: CT with contrast

                    - loosening of bilateral pedicle screws at T4 and T5 levels, right sided screws courses along the medial aspect of pedicle at T3-4 and T4- 5 levels, and transverses through the spinal canal and deforms right lateral aspect of thecal sac within the corresponding levels.

                    - bilateral laminar hooks at the T2 level are seen in the dorsal para spinal region and posterior to lamina

                    - dextroscoliosis of lumbar spine with apex at L2-3 level with multilevel degenerative changes most pronounced at L1-2 with Left moderate to severe; L2-3 right moderate neural foraminifera stenosis

                    - mild degenerative changes of the thoracic spine with no evidence of spinal canal compromise or nerve foramina stenosis

                    The results of the CT exam were not felt to be an explanation for my very weak legs. I am going to send the CT to Dr. Hu for her to evaluate. Unsure what this means, but possibly that I " have a screw loose".

                    Onward to rehab to work on "getting the message from my brains to my legs".

                    Susan
                    Last edited by susancook; 08-13-2014, 01:43 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


                    • Hope you get some relief today
                      Melissa

                      Fused from C2 - sacrum 7/2011

                      April 21, 2020- another broken rod surgery

                      Comment


                      • “Temporary paralysis of fibromyalgia”........

                        Wow, Susan....

                        Any new developments? What are the docs saying?

                        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


                        • Susan,how are you doing today? We all hope you are doing better. Take care of yourself.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

                            Particularly after all the support you have given me, I WISH I could be nearby for support--this will have to do...

                            I have a friend who had Gil???Barre Syndrome--it was several years ago and he DID fully recover (he was very bitter and I could understand that but wondered if this hampered his recovery)--I will probably see him at Fish Friday at the OD Cafe on the beach. If this is the issue and you would like me to, I will speak to him or to his wife--they are from Charlotte originally and very nice...Charly and Drew...

                            Martha

                            Comment


                            • Susan, hope you will feel better soon and this is only temporary. Think positive thoughts.
                              You have been through enough. Hugs to you.
                              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


                              • susan...how very frightening...all you have been going thru of late...

                                there is alot of info on the internet...
                                if you look up "paralysis caused by fibromyalgia" there is info about how a surgical procedure can trigger it...
                                ALOT of info...some of it on a chiropractic site...
                                i do not give any credence to chiropractors...that is my OWN personal prejudice...
                                but there is info online from alot of different sources...

                                i hope when you are feeling better that you will have a chance to read some of it...

                                hope everything gets better for you...

                                jess...and Sparky

                                Comment

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