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

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  • Hi! Missed yesterday's posting because I spent the day being depressed and bitching at everyone. I am stuck in the regret stage...."if only I had".....you know the drill. I hate being dependent on anyone and asking for help. When my husband signed up for "better or worse" I can't imagine that he thought about this scenario. My neck is also quite painful with a headache and I have been using hot and cold packs with little relief. I discussed this with my pain management MD who said that she could do a steroid injection once I am off Coumadin. An alternative is to go on another anti-coagulant, Lovinox temporarily and then do the steroid injection. I am going to email her and suggest the later because I cannot wait to have the injection in December.

    Tableone: best posting to catchup are 8/23 and 8/29. My story sounds like a soap opera. I have had 3 ambulance rides, been in 2 hospital (one twice), and a skilled nursing facility ;+{. All of this happened from 8/7 to 9/30. I went from being completely independent ambulatory to totally paraplegic to walking with leg braces (IFOs) with a walker and spotter for 75 feet. In between all of that was many tears and frustration/anger/depression and an emergency surgical revision that had a 10-15% chance of total paralysis.....and then, how could i forget it.....a pulmonary embolism.

    Jackie: my walking is improving. I still have major sensory loss below my breasts, so I am not quite sure where my legs are when I put them down. Dr. Hu has praised me for all of my efforts to improve. According to my read of the literature, PJF is not rare, but for many people it does not produce symptoms.

    Ed: no need for a lift, but thanks for thinking about me. I used a lift in the hospital that was built into the ceiling, so I could travel all around the room in the sling. My grand kids thought that it was awesome. There were 2 slings: one for bare ass on the way to the potty and another to move around clothed. Right now, I am good on transfers. I practiced that every day for 5 weeks in rehab.

    Gayle: I appreciate your support.

    I have in-home OT, PT, Home health aide for bathing, and a CNA once or twice a week to give my husband respite. I use a bedside commode at night. I have occasional incontinence due to neurogenic bladder issues
    So I wear Depends sometimes, especially when I go out. Handicapped bathrooms were clearly not designed by disabled people in wheelchairs. Stairs are a REAL challenge as my quads are not as strong as they need to be. My abductors and adductors are almost non-existent, so side moving is a big challenge. My attitude varies from enthusiastic/optimistic to depressive/pessimistic and usually somewhere in between. I am still angry about how my original hospitalization evolved and the possible implications that the delay in proper diagnosis might have on my eventual recovery. Guess that I will go back to counseling. I canceled my trip to Cambodia in January, but will be going to Mexico in December for sun and pool time. The rest of my life is uncertain as I am not clear on how able-bodied I will be to work in International Health.

    Some days peanuts, some days shells.

    Susan
    Last edited by susancook; 10-13-2014, 03:55 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,
      Your last post just put tears in my eyes! I know from you post the love you have to help people and not being able to at this point makes my heart hurt for you. I think when we work so long as a caregiver it is hard to stop and put ourselves as the one in need. I live my life through faith and the belief that all things are possible! I know you are a fighter and even in those moments of dispare you are only going to battle harder for your end result. Enjoy that trip to Mexico. I wish I could have a pool side moment in the sunshine these days. Keep your head up there are many of us praying for you.

      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, thanks for your kind words. Come over here and we can cry together. I. Still have. Some tears left to cry. My brother asked me if I regretted having the first surgery. I thought for a minute, but could not answer. Is being in pain worse than not being able to walk? What is the value of regret? Where does being angry get you? Who should I be angry at? What value is it if they do not know bout the anger? Do they even care?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
          Tamena, thanks for your kind words. Come over here and we can cry together. I. Still have. Some tears left to cry. My brother asked me if I regretted having the first surgery. I thought for a minute, but could not answer. Is being in pain worse than not being able to walk? What is the value of regret? Where does being angry get you? Who should I be angry at? What value is it if they do not know bout the anger? Do they even care?Susan
          Susan,

          I say it is not good to live life with regrets. When a curve ball is thrown our direction we can either hit it out of the park or run away. I say hit that ball! Pain is tough to live with no matter who you are. What is the long term outlook for you? With PT will you regain your strength and control of all body parts back. If so, that is all you need to focus on. Put all those negative thoughts in the ground and burry them deep because from this point on all you need is positivity to battle back. No if's, and's, or but's allowed! Only I will, I can, and I am are allowed in your mind. You of all know that the mind set is the best medicine when recovering from such trauma that you have endured. I will cry for you from this point on.

          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


          • Originally posted by susancook View Post
            Tamena, thanks for your kind words. Come over here and we can cry together. I. Still have. Some tears left to cry. My brother asked me if I regretted having the first surgery. I thought for a minute, but could not answer. Is being in pain worse than not being able to walk? What is the value of regret? Where does being angry get you? Who should I be angry at? What value is it if they do not know bout the anger? Do they even care?Susan
            Susan...

            You are EXACTLY why I'm always reluctant to encourage anyone to have this surgery. Statistically, you just hit the lottery. But, as you now know, it doesn't matter that you're 1 in 100, or 1 in 100,000, when it happens to you.

            At the SRS meeting last month, there was a session led by Lloyd Hey, where a few disastrous case studies were presented. There was one case where the patient had a lot of co-morbidities. The surgeon had turned the patient away multiple times with the recommendation for non-surgical treatment. The patient kept going back, however, and the surgeon finally gave in and did the surgery. That surgery ended up leading to half a dozen more increasingly complex surgeries. During the Q&A, one surgeon made a comment that sometimes, prescribing a wheelchair isn't the worst option for that individual. I feel very strongly that's true, at least in some cases. If someone's pain is such that it can be reasonably controlled by not standing or walking, I think that person needs to think long and hard about whether or not we're willing to take the risks of undergoing a surgery that has high risks, or if they can live with being wheelchair bound.

            --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 LindaRacine View Post
              Susan...

              You are EXACTLY why I'm always reluctant to encourage anyone to have this surgery. Statistically, you just hit the lottery. But, as you now know, it doesn't matter that you're 1 in 100, or 1 in 100,000, when it happens to you.

              At the SRS meeting last month, there was a session led by Lloyd Hey, where a few disastrous case studies were presented. There was one case where the patient had a lot of co-morbidities. The surgeon had turned the patient away multiple times with the recommendation for non-surgical treatment. The patient kept going back, however, and the surgeon finally gave in and did the surgery. That surgery ended up leading to half a dozen more increasingly complex surgeries. During the Q&A, one surgeon made a comment that sometimes, prescribing a wheelchair isn't the worst option for that individual. I feel very strongly that's true, at least in some cases. If someone's pain is such that it can be reasonably controlled by not standing or walking, I think that person needs to think long and hard about whether or not we're willing to take the risks of undergoing a surgery that has high risks, or if they can live with being wheelchair bound.

              --Linda
              Linda,

              With all due respect, I don't think that this is what Susan needs to hear now.
              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


              • Susan I am just sending well wishes. A nice vacation sounds great. And warmer weather. Does your winters get cold? I live near Chicago and if is anything like last winter it will be trough.
                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


                • I, too, live in that area -- northwest Indiana. Brrrr! I am so looking forward to going to Texas to visit with ALL our daughters and their families for Christmas.... one lives there. (REALLY BIG SMILE). Hopefully Texas will be nice and WARM! I've heard some forecasts (and who knows if they hold any merit) for a bitterly, snowy winter across much of the midwest and east. We will see.

                  Enjoy your nice, leisurely vacation, but use that sunblock. (Melanoma survivor talkin' here!) Ha ha! I just know you'll have a blast!
                  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


                  • Originally posted by LindaRacine View Post
                    Susan...

                    You are EXACTLY why I'm always reluctant to encourage anyone to have this surgery. Statistically, you just hit the lottery. But, as you now know, it doesn't matter that you're 1 in 100, or 1 in 100,000, when it happens to you.

                    At the SRS meeting last month, there was a session led by Lloyd Hey, where a few disastrous case studies were presented. There was one case where the patient had a lot of co-morbidities. The surgeon had turned the patient away multiple times with the recommendation for non-surgical treatment. The patient kept going back, however, and the surgeon finally gave in and did the surgery. That surgery ended up leading to half a dozen more increasingly complex surgeries. During the Q&A, one surgeon made a comment that sometimes, prescribing a wheelchair isn't the worst option for that individual. I feel very strongly that's true, at least in some cases. If someone's pain is such that it can be reasonably controlled by not standing or walking, I think that person needs to think long and hard about whether or not we're willing to take the risks of undergoing a surgery that has high risks, or if they can live with being wheelchair bound.

                    --Linda
                    Linda, I am unsure how to take your comments above that followed my posting of frustration about my situation. I do not see my situation as similar to the person presented by Dr. Hey. Did I miss something? Are you thinking that my revision surgery was inappropriately offered?

                    The initial surgery that I had was offered by a surgeon over a year from the time that I actually chose to have surgery. I turned him down then, and pursued to continue other treatments, PT, chiropractic care (that was a waste and in retrospect, probably dangerous for me), acupuncture. I did not elect to have surgery until my quality of life was poor, I could not function, and the pain management doctor had done everything that she could to relieve my pain. I was given narcotics and took those only occasionally in the 2 months before surgery.

                    The choice to have any surgery is always a craps shoot. In my mind, surgery was chosen to improve my ability to do the things that I love: traveling, hiking, camping, doing medical volunteer work, being active in general. I hoped that I had passed the time of postop problems after my first surgery. I was very active and was back to the life that I enjoyed! My frustration lies in the trust that I had that once I was being cared for in the hospital, that all of the great medical minds, the people that I trusted would find the reason for my leg weakness and initiate a treatment that would help me to regain my independence. Unfortunately, there was a 2 week lag from presentation of symptoms to surgery during which time I was having continued insult to my spinal cord from my hardware screws. I was sent to a Skilled Nursing Facility to "get better", which was not the answer to my problem. If Dr. Hu had not intervened, I would have probably spent the remainder of my life there because I could barely move my legs and I needed substantial help in self-care. The displaced hardware "impinging on the thecal sac" would have no doubt caused more damage and who knows how that might have affected my ability to walk....but I cannot imagine that it would have been favorable. My questioning emanates from the lag in diagnosis and what should have happened, which probably would have made a difference in my recovery. In all that I learned in school and have read in the medical literature, a sudden change in ability to walk should be treated as a medical emergency. The longer that one waits to relieve the impingement on the spinal cord, the greater the chance of further damage and inability to regain function from the damage. The "elephant" in the room was my spinal hardware from T3 to Sacrum which was discounted by medical personnel who do not conduct spinal surgery with hardware.

                    When I finally had emergency surgery, Dr. Hiratzka said that there was a 10-15% chance that I would be completely paralyzed as a result of the surgery. I assume that he was quoting that number of probability that when he backed the screws off from their indenting the spinal cord that sometimes removing the screws causes a tear in the thecal sac which would cause paralysis or maybe death. I weighed that risk against not doing anything, that is, refusing the surgery. Not having the surgery might lead to total paralysis, but having the surgery could give me a chance at having a useful, active life. I remember the call from Dr. Hu at about 7:45am when I was awake having already showered, in the nursing home awaiting my breakfast. She said to me, "Hello, Susan, how are you doing?" My answer was, "I am really scared" at which time she told me that she knew what was wrong with me and would I agree to come to Stanford for evaluation and maybe surgery? Of course, I said, "Yes", since that was the first that anyone had offered hope to my situation. I did not think that I would improve much if I stayed in the nursing home with nominal OT and PT.

                    ....so where am I now? I walk some with a walker and use a wheelchair mostly. I still have neurogenic bladder symptoms, so am incontinent a couple of times a week. I will see a urologist in the next couple of weeks for suggestions. PT and OT come to the house twice a week and I feel that I am getting stronger. I saw my Rehab doctor yesterday. He thought that the visit was just a follow up from my first surgery and was very surprised to learn about the intervening problem and revision surgery.

                    I continue to work on recovery and hope that I can regain movement during this critical time in recovery of function from spinal cord insult. Meanwhile, I am trying to wrap my head around everything that occurred this 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


                    • Originally posted by susancook View Post
                      Linda, I am unsure how to take your comments above that followed my posting of frustration about my situation. I do not see my situation as similar to the person presented by Dr. Hey. Did I miss something? Are you thinking that my revision surgery was inappropriately offered?
                      No, sorry, I was responding about your feeling of "if only I had". I suspect I should have dome some quoting when I posted, to make my point more understandable. Sometimes (often), my fingers get ahead of my brain. I was not trying to imply that you had made the wrong decision. In your shoes, I almost certainly would have made the same decisions you did. Each of us can only judge for ourselves whether we can live without surgery. I was trying (apparently poorly) to make a learning moment out of your experience, for others who are just starting their journey, that this is not a decision to be made lightly, because it can go horribly wrong. The point of the comparison was not the woman who begged their doctor to do the surgery. The point was that, even with the best of intentions, sometimes everything goes wrong.

                      Sorry if I offended anyone. In retrospect, I can see why it appeared like I was making it seem that Susan had made a bad decision.

                      --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


                      • Linda, I was confused about the point of a wheelchair being a solution to the type of pain that drives people to try surgery. How is accepting a wheelchair in lieu of surgery going to solve the pain?
                        Sharon, mother of identical twin girls with scoliosis

                        No island of sanity.

                        Question: What do you call alternative medicine that works?
                        Answer: Medicine


                        "We are all African."

                        Comment


                        • I can understand what Linda is saying. She is not saying that Susan made any wrong decisions. In my opinion she was just pointing out that the decision to undergo scoliosis surgery should not be taken lightly because even under the care of some of the best doctors things can go wrong. You never know how a persons body is going to react to the trauma of the surgery and you can not guarantee that the pain is going to be less.

                          I don't feel that her post was directed at Susan, but towards new patients considering surgery as the magical fix and to encourage them to weigh out every option prior to committing to an irreversible procedure. The spine is a complicated being and doctors are learning more and more everyday, but with every individual being different the medical community will never be able to 100% determine the outcome of scoliosis correction.

                          Susan, no regrets! We can not predict the future, so decisions in the past can not affect your present state of mind. Keep fighting to get stronger because that is all you can do now. And know that you are an inspiration to many. Your drive to find the problem and your strength to overcome the hand you were dealt makes you an inspiration.

                          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


                          • Originally posted by Pooka1 View Post
                            Linda, I was confused about the point of a wheelchair being a solution to the type of pain that drives people to try surgery. How is accepting a wheelchair in lieu of surgery going to solve the pain?
                            Many adult patients have no pain, or very little pain, as long as they're sitting or laying down.

                            --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


                            • I also understand Linda...

                              Its hard to have things like this happen to fellow posters....after awhile it tears your heart out. I almost quit posting after Walid’s surgery from extreme sadness.

                              I couldn’t continue on with the amount of pain I was in....When my surgeon rejected me, I told him that I was ready, I can hang no matter what happens.

                              I think that Mexico sounds good right now.
                              http://www.youtube.com/watch?v=VQnHAb_6sOs

                              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
                                I also understand Linda...

                                Its hard to have things like this happen to fellow posters....after awhile it tears your heart out. I almost quit posting after Walid’s surgery from extreme sadness.

                                I couldn’t continue on with the amount of pain I was in....When my surgeon rejected me, I told him that I was ready, I can hang no matter what happens.

                                I think that Mexico sounds good right now.
                                http://www.youtube.com/watch?v=VQnHAb_6sOs

                                Ed
                                Yup, we've heard a few horror stories over the years. I try not to dwell. And, on the other hand, the surgeries that these guys are doing in 3rd world countries are beyond inspirational. When I think I've seen it all, I see something that practically knocks me down. When they put the SRS meeting videos up, check out a session on ankylosing spondylitis for some amazing results.

                                --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

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