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

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  • Good morning to you . I sent a private message to you. I hope you are well.
    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


    • Sheila... Your surgeon can put you in touch with a patient or two who have had a PSO. If they can't, run the other way.

      --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 susancook View Post
        Roarer, thanks for sharing your similarity in walking with me. I imagine that my postings scare some people wondering if their screws will become loose...
        Susan,
        There is NOTHING funny about a SCI. But I do find "some" humor in the fact that at least you have a reason for your walking troubles. I've been accused of having a screw loose, but I'm just twisted. I have proof on my x-rays!

        Take care and try to keep your sense of humor. It gets you a long way! I'm with you on the frustration scale. But I do know, at least, that my troubles are genetic. I watched my dad suffer and die. It was horrible.

        YOU, on the other hand, have nowhere to go but UP! You WILL get better. Time will heal this wound. You have already made a lot of progress since your ER visits. I have had a time or two where I could not move one leg. It was very frightening to say the least! You are MOVING both legs and bearing weight on them in your PT. You will gradually improve. I have every confidence that you will.

        Big (((HUGS))) to you!
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

        Comment


        • Originally posted by sheila C View Post
          Best of luck to you. I am jealous of you in that you have made the decision. I am in pain every day but too scared of the pedicle subtraction osteotomy revision surgery to have it. I wish I could talk to someone who ahs actually had it. That would help me a lot. Cause the internet can only go so far. A real person goes a long ways. I wish you the best.

          Sheila
          Sheila, best of luck with solving your pain. My suggestion is to find a very experienced surgeon and a second opinion surgeon and maybe another if you need it. No spinal surgeon will give you a guarantee of success, but then again having the surgery or not is your choice finally. You need to weigh the possible risk with the potential benefit. Take along another person to take notes.

          Absolutely talk with people who have had surgery with the doctor that you are seeing and you can find out what is involved. I must say that this revision surgery was easier than the original surgery. I went from very little or no movement to hope for some movement. I was given a10 percent chance of permanent paralysis.

          It is interesting that I spent a long time searching out my doctor for my primary surgery and had 2 great choices in very experienced spinal surgeons. For my emergency surgery, I had the spinal surgeon on call who it ended up was fairly recently out of his fellowship, and he was wonderful!

          I hope that you find pain relief. 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,it was good to hear from you and I hope you are continuing to improve. Are you still a snail? Have you become a rabbit? You are so kind in your concern for the rest of us scoliosis people.
            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


            • Maybe like a "snail on steroids"? I am walking with a walker with progressively decreased stumbling. I have carbon fitted leg orthotics which help. An acupuncturist is coming today....of course, not covered by Medicare. I can do 1/2 of a Kegal! A major accomplishment which returned last night! I already had urinary urgency "old lady issues", but without the ability to do a Kegal, urgency came on quickly and if I could not get to the bathroom quickly, incontinence ensued. Flood incontinence....kind of like your own personal hot tub. Fortunately, that is improving.

              I am slated to go home in about 10 days, and I really need to figure out stairs. Our front porch has too much of a slope for a proper ramp, but maybe the guys at the ramp company can help my husband find something that works.

              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 rohrer01 View Post
                Susan,
                There is NOTHING funny about a SCI. But I do find "some" humor in the fact that at least you have a reason for your walking troubles. I've been accused of having a screw loose, but I'm just twisted. I have proof on my x-rays!

                Take care and try to keep your sense of humor. It gets you a long way! I'm with you on the frustration scale. But I do know, at least, that my troubles are genetic. I watched my dad suffer and die. It was horrible.

                YOU, on the other hand, have nowhere to go but UP! You WILL get better. Time will heal this wound. You have already made a lot of progress since your ER visits. I have had a time or two where I could not move one leg. It was very frightening to say the least! You are MOVING both legs and bearing weight on them in your PT. You will gradually improve. I have every confidence that you will.

                Big (((HUGS))) to you!
                Just in case my joke was vague. I was accusing you of having a screw loose!

                I am so elated to hear that you are recovering. Boy oh boy when I couldn't pee, I would have been overjoyed to sit in my own personal hot tub! (but not in MY bed)

                It's good that you can do at least half a kegel. That means at least the sacral nerve on one side is coming back to life. I would take it that there's a great possibility that the other half will follow since, as you know, they connect up a little higher where the damage was done.

                Being able to walk with a walker is great! As your nerves come back to life it should get better and better until you don't need the walker.

                As regards the ramp; most cities have ordinances on how steep they have to be. I need one before the quickly approaching winter. So I'm on the ball with the construction people. With some of them, it's like they don't care if they get my business! It's so frustrating! Grrr...

                I love to hear your positive attitude and your good news!
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • Hi Susan,
                  I am soo very glad to hear you are doing much better. I know it was some where in my recovery with one of my revisions I was having trouble with nerve damage and my Dr. Told me that it takes up to eighteen months for the nerves to heal. Funny how the mind can wipe out trauma, as I can't remember all the particulars of my problem. Obviously it wasn't as serious as what you are going through. But was just
                  thinking about what my Dr. Had said about the 18 months for nerves to heal.
                  You just keep that spirit that has brought you through so many things. And helped many of us get through so many tough times!!! You are an amazing lady, and this too shall pass Susan.
                  Don't know why we were picked to have all these serious issues, but I believe there's a reason for everything. Hope you continue to improve everyday. Sincerely, 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


                  • Originally posted by babyboomer16 View Post
                    Hi Susan,
                    I am soo very glad to hear you are doing much better. I know it was some where in my recovery with one of my revisions I was having trouble with nerve damage and my Dr. Told me that it takes up to eighteen months for the nerves to heal. Funny how the mind can wipe out trauma, as I can't remember all the particulars of my problem. Obviously it wasn't as serious as what you are going through. But was just
                    thinking about what my Dr. Had said about the 18 months for nerves to heal.
                    You just keep that spirit that has brought you through so many things. And helped many of us get through so many tough times!!! You are an amazing lady, and this too shall pass Susan.
                    Don't know why we were picked to have all these serious issues, but I believe there's a reason for everything. Hope you continue to improve everyday. Sincerely, Linda
                    Linda, thanks for your encouragement! You have always been a hero to me.

                    Thanks for the info on 18 months. Guess that I am here for the long haul. I thought that I was on the 2 year recovery plan, but since I never made it to the 2 year time after my 1st surgery, my timetable has been reset. Bummer!

                    I am not sure that I believe that we are picked for these serious issues and that there is a reason for everything. In many ways, I wish that I did....but then I would wonder why I was chosen and what on earth could possibly be the reason? I believe that I am both a spiritual and religious person, but I also believe in the randomness of events in the universe, but that our spiritual or religious practices can help us get through these challenges.

                    I hope that you are doing well and enjoyed your summer.

                    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 wanted to add that even though that was my Drs. Opinion about the eighteen mo. fpor nerves to heal, it was just that, one opinion. I only told you that, as it did make me feel a little better, as I was worried that I my nerves weren't healing fast enough. So when she told me eighteen mo., I believe that was the maximum time, and she didn't want me to worry that things were moving slow.
                      I just hope you don't have to wait that long for things to get going again!!! (Smiles) you are a trooper,
                      But even at that, some things are just almost too much! This has to be tough. I am thinking of you with healing thoughts. And hope you are feeling better each day. Warm thoughts of you~~
                      P.S.I am having some real pain issues. Will put them on another thread! (Darn!)
                      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


                      • Originally posted by susancook View Post
                        Linda, thanks for your encouragement! You have always been a hero to me.

                        Thanks for the info on 18 months. Guess that I am here for the long haul. I thought that I was on the 2 year recovery plan, but since I never made it to the 2 year time after my 1st surgery, my timetable has been reset. Bummer!

                        I am not sure that I believe that we are picked for these serious issues and that there is a reason for everything. In many ways, I wish that I did....but then I would wonder why I was chosen and what on earth could possibly be the reason? I believe that I am both a spiritual and religious person, but I also believe in the randomness of events in the universe, but that our spiritual or religious practices can help us get through these challenges.

                        I hope that you are doing well and enjoyed your summer.

                        Susan
                        Bold mine.
                        Susan, I am a religious person, too. I can send you a PM if you want. But I 100% do NOT believed we are "picked" to have bad things happen to us. There are too many crooked, mean, and just awful people in this world that enjoy perfect health and too many innocent, good people that have horrific things happen to them. What is a baby going to learn from being born with a severe illness? Many may say it's a lesson for the parents. Being a religious person and a person of science this does NOT make sense either way. Either you have a vicious god out there torturing innocents if you believe in a religious view like that, OR you are making no scientific sense taking into account genetics, lifestyle, previous injuries, diet, and so on. So that would make the argument a lose lose on both accounts. I do feel that religious people are helped to endure hardships that were brought about by the aforementioned things and things I can only mention in a PM. But, atheists and agnostics also have things that give them coping mechanisms that get them through difficult times, too.

                        So my best advice is keep your faith, but don't bother looking for reasons why you were "picked" to suffer. You have done much good for women that would otherwise probably be dead if not for your services because you are a woman of science and faith. None of us "deserve" this. Like one particular member of this forum likes to say, "Life isn't fair." I agree with that statement wholeheartedly.

                        I sincerely hope you feel better and better each day. I'm sorry you aren't on the two year plan. Things can happen without forwarning and this is a dangerous procedure. I have to say Kudos to all of you who do go through this. I can't even imagine with the pain I have now how you all get through this.

                        And if my little joke up there was tactless, I apologize. I try to make light sometimes just to ease the pain a little. "Laughter is the best medicine." I can't remember who said that right off hand. The same lady who said that, "If life is a bowl of cherries, how come I got all the pits?" My concussion is still affecting my memory after a MONTH. I can blame it on that anyhow, right? LOL

                        Take care and try to keep your spirits up.
                        (((HUGS)))

                        Erma Bombeck, I remembered!!!
                        Last edited by rohrer01; 09-26-2014, 04:24 AM. Reason: I remembered a name!
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • Good post, Rohrer. I concur absolutely.
                          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
                            thinking of you and wondering if your date to go home is still
                            September 30th....?

                            are there plans being made for any professionals to come visit you
                            at home...? OT, PT, anyone like that...?
                            or will you be expected to travel to obtain such services...??
                            i certainly hope arrangements can be made for therapists
                            to come to you, at least in the beginning of your recovery at home...

                            wishing you only healing every day, by inches, feet, or leaps
                            and bounds....just all in the right direction...

                            jess...and Sparky

                            Comment


                            • Linda, thanks for your information and support. I am slowly finding an outlet for my anger and am beginning to redefine myself. There is a part of me that wants to change my entry from the "glad" that I had scoliosis surgery to "not-so-happy" that I had scoliosis surgery. I was genuinely pleased about my surgery until early August. Now, I am not so sure. My life has been changed maybe forever. I just ordered my wheelchair which is a sign of defeat. I am trying to morph the old Susan with the new Susan. I have read much of the medical literature of PJF and PJK. When I noticed the kyphosis after surgery, I thought that it was just a cosmetic problem, and while not pleased with my appearance, little did I know that I would shortly be paralyzed from below the breasts down and incontinent. Another surgery later, I can walk some and am generally continent. Why didn't my surgeon tell me about this possibility? My interpretation of the literature is that while proximal Junctional kyphosis happens in older people (with osteoporosis) with long fusions and A/P surgeries, that the actual failure does not happen very often. Well, crap, why me? Is there randomness in the universe or was I chosen? I try to be patient and celebrate small accomplishments, but this gig is moving all too slowly.

                              I am going home next week having spent over a month in a fabulous rehab institution, grateful that I can now walk some, am not urinating on myself and trying to find the "new normal".

                              Susan....just wheeling along
                              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


                              • Good morning Susan. I sent you a private message. I look forward to meeting you if you come to Chicago. Maybe I will make it that way. I do have a good friend on the west coast. So you never know. Wishing you a better day!!!
                                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

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