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

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  • Hi, Susan -

    My heart aches for all you've been through and continue to go through. I pray for you daily, even when I'm not around online. LOL You've made so much progress from being paralyzed to doing what you are doing now, so I have no doubt you will continue to improve, slowly but surely. No regrets!! Sending love and best wishes to you and yours.

    Fifa

    Comment


    • Interesting day.

      Got out of my Toyota Highlander (daughter driving) for lunch....no problem as gravity is your friend
      Getting back into a Toyota Highlander after lunch, well that was quite a challenge. What do you do in a shopping center when you cannot get back into your car? Fortunately, I wear a "gate belt", most fashionable, I might add. While we laughed most of the time, it was scary to try and try to get my weak legs to cooperate. Thank God for my running board.

      I was reading my OHSU chart tonight and reviewing my diagnosis list and came upon the diagnosis that my surgeon had written the day of my revision surgery: "cauda equina syndrome". Now, that says it all! Bingo and cr..

      Susan

      ....and about whether or not I made a good decision or not about having spinal surgery: decisions need to be made on the information that you have at the time. And, while I am having great challenges not thinking about regret....you cannot second guess the decision when life presents information after the fact that you did not know at that time that you made the decision. Unlike almost everyone else on the forum, there was not one part of me that was hesitant to have the first surgery starting 2 weeks before the surgery. I was hoping for that confidence and trust before that point, but when it came, there was no turning back in my mind. My confidence was solid as I had too much pain and disability to continue like i was. My attitude was, "bring it on!" I remember that confidence and resolve.

      So. When Dr. Hiratzka said at 7PM as he gave me the informed consent and we met in the preop suite for the first time, that I had a 10-15% chance of complete paralysis with the surgery, I was still confident in my decision to have the emergency surgery because in my mind, if I chose not to have the surgery, I would surely be paralyzed. Of course, I am not in fact paralyzed, and I don't know what I would think now if that were the outcome.

      Linda makes some extremely valuable points, but I firmly believe that you need to give the decision it's due diligence and weigh the alternatives and try the much less invasive and non-invasive alternatives....but you can't look back once you have had the surgery.

      Some days peanuts, some days shells....
      Last edited by susancook; 10-17-2014, 02:17 AM. Reason: Addled mind means more mistakes
      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
        had to look that one up myself...cauda equina syndrome...
        wow...so many things listed as possible causes...
        including "poorly placed screws...." and "spinal stenosis"...
        and a whole list of things...some of them fairly common to
        scoli patients pre surgery...

        i know one cannot "second guess" a decision one has made
        about surgery...after the surgery has taken place that is so
        damaging to the spirit, the ego, the psyche, everything...
        hind site is 20/20...so it is so easy to look back and think
        "woulda, shoulda, coulda....etc."

        i am sorry u have continuing problems...but i hope they go away,
        slowly if that is the way....just so they keep going away a little
        every day...

        jess...and Sparky, who is in a cone after very extensive surgery,
        & not a happy puppy right now...

        20141016_140817_resized.jpg20141016_151127_resized_1.jpg

        Comment


        • An attempt to add pictures from my revision surgery

          image.jpgimage.jpgimage.jpgimage.jpgimage.jpgimage.jpgimage.jpgimage.jpgimage.jpg

          An attempt to add pictures. I had 3 attachments and somehow it added many duplicates. Help me figure out how to do this like most of you have already figured out.

          These are pictures from my CT of screw in spinal cord, hardware pulling away from spinal cord and thus indenting the spinal cord, and my revised hardware.

          Susan
          Last edited by susancook; 10-19-2014, 08:07 PM.
          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,
            Oh my goodness! That caused me to cringe in pain for you! I have to say that you are defiantly a miracle because even though this all seems bad now, it could've been so much worse but you defiantly had an angel by your side. Keep up the good work healing! You have got to be one of the strongest people I've met. And here I thoughy Ed's story was the craziest, but you have now taken the lead. I will no longer feel sorry for myself after seeing these images.

            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


            • Tamena, I am unsure if I should feel good about my situation helping you to feel better, but "it is what it is". If I can be here for you, it is my pleasure. Glad that at least someone goer something good out of this!

              I spent a while going through my first post in August about my journey to the present. It left me feeling overwhelmed. But, I was very, very touched by the kindness, prayers, wishes for recovery, and thoughtfulness of so many of the people on this forum. I am "your biggest nightmare". I am the outcome that nobody wants and certainly, everyone fears. But, as I have said before, I made the decision to have the original surgery based on good informed consent. To second guess that decision based on what has happened to me in the past 2 months....well, that gets you no where. What it has done is to make me untrusting of the medical community.

              What am I doing now? Physically: I am still using my wheelchair a lot, but have decided that I need to increase my walking and attempts for stair climbing. I am going to enlist all of my relatives to work with me. Psychologically: a lot is repressed. I have really not processed all that happened this summer. My anger at all that the missed diagnosis has had on my present situation and my future has yet to be processed. I truly hope that I can continue volunteering in International health.

              Susan
              Last edited by susancook; 10-19-2014, 10:05 PM.
              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,

                Have faith that you will overcome. The desire to be back volunteering in the international health is a good thing because it keeps your mind focused on recovery. I am praying for you daily.

                (((((Hugs)))))
                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


                • Good morning Susan. It will take a long time to process this . It took me years because I had an injury that was complicated by scoliosis. It takes a huge amount of time and is a very slow process. And I didn't have the issues that you are dealing with. My hugs are being sent your way. The pictures are telling a story of what you are living. My prayers are with you.
                  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, it seems so long ago you were asking about the initial surgery and how anxious and yet optimistic you were. My, how much water under the bridge has passed by... and then debris that has practically wiped out the bridge. You have been holding on and keeping steady and strong. You are a survivor, taking things as they come and dealing with them. You were dealt a bad hand for sure, and have every reason to feel angry and bitter -- and as you say, untrusting of the medical community. Yet you come through with shining colors on the attitude scale, ready to work hard at your recovery and reach out for the opportunity of once again volunteering in International Health. Kudos to you, dear friend. You will achieve good things in your life, so keep striving.

                    It sounds like you have a very good plan in place. And of course you still need time to process all of this! The whole course of your life has changed, and you are not sure where it is going to lead. Hold fast to your faith and He will be with you throughout your life. As for the problems that ensued with the missed diagnosis -- it seems like a concatenation of events that just did not stop. (All my daughters went on in the Scripps Spelling Bee to the regional level, and that is the word my youngest went out on. It means things are linked together, like a chain -- this caused this, which caused this, which caused this, and so on). Very much like (since I was a librarian for so long) the title of the series by Lemon Snicket called A Series of Unfortunate Events only in your case that is to put it mildly. Yes, your x-rays speak a thousand words and help us all to see the horrendous story and suffering you are going through. Praying for you and for your strength as you battle this. With love, Susie
                    Last edited by Susie*Bee; 10-21-2014, 05:59 PM.
                    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

                      I righted your CT’s below......

                      I can understand how you feel about all of this....its hard for sure and will take time. Your kyphosis along with osteoporosis is not the best combination and can see how hard the spine is pulling forward. Its hard to believe this is happening and it would be nice to know why PJK and large kyphosis curves happen????? It looks very painful....

                      From reading the forums over the years it seems that kyphosis is a challenging situation...Its good that you have your testimonial documented here. I don’t know if you have seen this, thought you would be interested in seeing this.

                      Many kyphosis patients suffer from severe neck problems....

                      Dr Hey on PJK correction using his “U” rod....
                      http://drlloydhey.blogspot.com/2011/...nique-for.html

                      I am also praying that you stay strong...

                      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


                      • Thanks, Ed. I promise to stay young.....or at the very least, continue to act immaturely!
                        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


                        • Appt w/ surgeon

                          I had a follow up appt with the spine surgeon, and the L thoracic pain the I am having is not due to any problems with the hardware....YEA! If he had said that I needed another revision surgery today, I would have melted.

                          He said that "everything looks good"....as good as a proximal kyphosis of 64* can look. EEEEGADS! That can't be good!

                          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, it sounds like there were some positives in there for you (ie thank god you don't need another revision surgery). Is that the same degree kyphosis you had right after your original surgery?

                            I'm really glad things looked good. Keep taking it one day at a time. Despite all the frustrations you are dealing with (and I know thats an understatement) and all the ups and downs, it sounds like you are getting stronger and making progress.
                            Surgery Jan 6, 2014 at 38 yrs
                            Posterior Fusion T10-L4, osteotomy 1 lev.
                            Pre op-Thoracolumbar Curve-50 degrees

                            Comment


                            • Originally posted by springchicken View Post
                              Susan, it sounds like there were some positives in there for you (ie thank god you don't need another revision surgery). Is that the same degree kyphosis you had right after your original surgery?

                              I'm really glad things looked good. Keep taking it one day at a time. Despite all the frustrations you are dealing with (and I know thats an understatement) and all the ups and downs, it sounds like you are getting stronger and making progress.
                              Thanks! My initial kyphosis was 90* and that was much lower in my thoracic area. This kyphosis is higher....at the end of my instrumentation at T3.

                              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


                              • Meeting with doctors involved with my first admission w/ incorrect diagnosis

                                I met with the doctors involved in my first hospitalization, the Internal Med and Neurologist and also my spine surgeon who finally did my surgery, Dr. Hiratzka and the Patient Advocate and the Risk Management person. My husband, brother, and son(family nurse practitioner) also attended.

                                The 2 doctors involved in my first admission apologized for their error in diagnosis. Having worked in the medical system for 23 years, it was good to be able to hear their concern.

                                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

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