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

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  • massage -

    Hi Susan, osrry to hear the "gentle" massage caused you to ache. The first time I ever had a massage was during Physical therapy, post-op for my C spine recovery. Later that day- I felt exhausted. Not achey though- just tired. I believe the massage works out the tight muscles and releases cell debris or hormones/ toxins (?) into your bloodstream. Subsequent massages did not affect me the same way- just that first one. Which was a very vigorous massage too- it felt good during & after, I just had a gradual onset of fatigue as the day progressed,

    anyway, I trust you will have recovered by now- drink plenty of fluids, the therapist told me to drink fluids to flush my system. r/ Jamie

    PS so cool that you in the ARMY! IN THE 70s? I was Air Force - 8 yrs- I was working 12 hr shifts in the ICU and had incredible back pain, so the ortho surgeon ordered Xrays- first time I ever saw my spoine- I cried! but I'm so glad I served, one of the best decisions of my life!
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

    Comment


    • One year visit at 13 months at Stanford

      My one year visit passed fairly uneventfully. The usual X-rays..."every looks fine" and "looks like you are 90% fused". Then Dr. Hu admitted that surgeons see more fusion in their patient's X-rays than other doctors see. I continue to have discomfort in my sacral area....like there is a board nailed to it. I also lean slightly to the right. My thoracic area in the back hurts a lot and I have tingling in my L armpit. I am on the 2 year healing program, us older folks heal slower.

      I was pleased that X-rays looked good. A positive take home. I felt better about 4 months ago, so unsure what's happening with the new pain. The sacral pain has been there since before my 6 month checkup. At that time, she thought that it might be iliac screws.

      So now, more PT. I am tired of going to PT. When you're on a first name basis in the PT Department, it's time to move on. I joined a gym with a personal trainer. Slow and steady.....maybe not the steady part.

      Taking Tramadol, Naprosyn, tizanadine, Gabapentin (at night only). I have great coverage for medication.

      I am still very happy that I had surgery. When I stand in lines, I smile and remember when I laid down so many times before surgery because I was in so much pain. I was clearly going downhill before surgery, so it happened at the right time.

      Next is the 2 year visit and another trip to the Bay Area. We spent some time in Pacific Grove which was fun and relaxing. My husband and I had lunch with Libby and Skip from the Forum. Unfortunately, we couldn't compare scars on Fisherman's Wharf! Great to hear her story. I wish that I had more opportunity to meet some of you for lunch. I was hoping to meet up with Jennifer while we were in Australia, but we did not drive far enough north.

      A suggestion: Don't take long airplane rides! The flight from Los Angeles to Sydney was 12 hours and I could barely walk when I got off the plane. Yikes!

      Onward to the 2 year appointment and less pain.
      Susan, no more menopausal baby but a large scar...the surgeon said that he cut off some "extra skin" which I think is a euphemism for tummy tuck.
      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
        I was pleased that X-rays looked good. A positive take home. I felt better about 4 months ago, so unsure what's happening with the new pain. The sacral pain has been there since before my 6 month checkup. At that time, she thought that it might be iliac screws.

        So now, more PT. I am tired of going to PT. When you're on a first name basis in the PT Department, it's time to move on. I joined a gym with a personal trainer. Slow and steady.....maybe not the steady part.
        Is it possible that your work with the personal trainer is actually causing the additional pain?
        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 don't do anything strenuous in the gym, but I will have my PT look over my exercises to make certain that they ar OK. I have not been to the gym in 5 weeks since I have been traveling in Australia and New Zealand and then forgot my sneakers when I finally got to the gym! I did not carry any luggage on my vacation.

          I tried heat, cold, and Lidoderm. Cold help a little. I am frustrated that I felt so well, and now my thoracic area is so painful. Nothing that I do seems to help. I know that healing takes a while, but I am way beyond "while".

          Thanks for listening to my whine. 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


          • Fellow Two Yr. Healing process

            Hi Susan, I don't know what's going on per say, but I know that after my one yr. Check-up, I hit the ground running. He said I was free to do as I pleased~~ but to listen to my body. Well, like I said, I hit the ground running and after a couple weeks I was in pain. I was very disappointed. But it's understandable if we think about it. We babied ourselves during the first year, and now our muscles bodies wonder what hit them!
            I'm like you, I have the board nailed to my butt. And my next biggest pain is my neck has deteriorated and with that I have terrible shoulder pain. And some days I feel like I'm wearing a corset too tight!!!! Do you ever get that? I guess my point is, we maybe are so much more active, that we're waking up our bodies and it's not any fun! However, I'm with you, I still can remember what it was like before surgery! And like you, I don't want to ever go back there! I would think personal trainers are just working your muscles and strengthening your body. Whatever the case, I think we have to deal with aftermath of this gigantic surgery. We have great support on this web site! That's for sure! So glad you're here as part of it!
            Hope you're having a good day. Oh, and by the way, I got a shot in my shoulder that really worked.
            Lots of good vibes coming 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


            • Thanks Linda for your kind words.

              I saw the Pain Mangement MD at OHSU....we go way back to preop and my illusion that if only I had a lot of small procedures and could relieve my pain, that I could escape surgery! Hahahahahahahahahahahahahahahahahahahahahahahahaha hahahaha.
              Dr. Chen said that Dr. Yoo (I think that's his name),a spinal surgery orders an "instrument injection". The spot of the pain is isolated, and injected. I have that scheduled in 10 days.

              She was less clear about what to do about my L thoracic pain. That part of the visit was disappointing. She said that the tingling under my arm usually reflects T4 to T5 or 6 concerns. Maybe I should be back to my friend Bishop Singham, the faith healer in India. But, then again, he did not help my headaches.

              Susan
              Last edited by susancook; 06-30-2014, 02:05 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


              • Susan, I'm glad to hear your x-rays look good, but hate to hear about your pain. It's good to know you're still glad you had THE surgery! I worry about 'new' pain because what I currently have is tolerable.

                Wow- Austaila & New Zealand - a trip of a lifetime! I want to go to Alaska at the 1.5 year mark. It'll be a goal to work toward once I have THE surgery. It gives me confidence to read about all the things you're doing!

                Hope the injection helps!
                Peg
                61 yrs old
                75 degree lumbar curve with thoracic kyphosis
                T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
                Working on healing in Columbus, Ohio!

                Comment


                • Bummed again.........

                  The Pain Management MD injected into the L5, SI joint, and one other spot....but not at the site of the iliac screws. Unsure why not. Procedure did not help at all. Bummed. Regroup and move on. 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,

                    Bummed for you…..why is it so hard I wonder to get them to inject the screw area? Didn't Dixie also go in for a screw injection and they ended up trying/failing to do a lower lumbar foraminal (never root) injection also.

                    Are you still working out with your hunky personal trainer?

                    Take care,

                    Gayle
                    Gayle, age 50
                    Oct 2010 fusion T8-sacrum w/ pelvic fixation
                    Feb 2012 lumbar revision for broken rods @ L2-3-4
                    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                    2010 VBS Dr Luhmann Shriners St Louis
                    2017 curves stable/skeletely mature

                    also mom of Torrey, 12 y/o son, 16* T, stable

                    Comment


                    • Oh, Susan . . . I sure wish you could find some relief! Did I read something about a hunky trainer - that's a useful distraction!
                      Peg
                      61 yrs old
                      75 degree lumbar curve with thoracic kyphosis
                      T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
                      Working on healing in Columbus, Ohio!

                      Comment


                      • 1 year 5 months out from surgery....and now???

                        Short story....I am at OHSU hospital in Portland, OR. I was fine 2 weeks ago, then had some difficulty with stairs and balance, did OK for another week, then this week progressively had difficulty with balance and weight bearing and knees collapsing. Still have sacral tightening pain and L thoracic pain with tingling in L axillary area. I have fallen about 4 times, all mostly tripping up on my feet and sliding down a wall (as I generally walk next to a wall holding on with a walking stick). Thursday, I saw Internal Medicine primary, spent multi hours waiting in the ER with a few hours with tears running down my face, had an MRI, lots of blood work, and a dozen neuro exams. Bottom line: upper body strength great, legs weak. Neuro exam show lower extremity lack of strength and decreased reflexes. MRI was OK and inflammatory markers were slightly elevated. I am using the bedside commode in the hospital with help.

                        So, not a happy camper here, worried about whether I am bottomed out and will gradually get better, get worse, or stay the same. It is frustrating to try to tell your legs to do something and they will not do. Scared, bummed, and worried.

                        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 PeggyS View Post
                          Oh, Susan . . . I sure wish you could find some relief! Did I read something about a hunky trainer - that's a useful distraction!
                          Peg, I just read your entry and you made my smile. I need a smile right now (see post above this one)... You made my day. Hunky trainer is still at the gym....unsure what he would say now about me.

                          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


                          • I'm so sorry to read this latest development Susan. I wish I could help with some ideas, but I'm clueless. I just hope they quickly find out what the cause is and can treat it. Let us know how you go. I'll pop in tomorrow and see if you have some news. Best of luck!
                            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


                            • Hi Susan,

                              I'm so sorry to hear about this set-back. You were doing so well…do the docs/neuro's have any idea what is going on?

                              Take care, and let us know when you have some news.
                              Gayle, age 50
                              Oct 2010 fusion T8-sacrum w/ pelvic fixation
                              Feb 2012 lumbar revision for broken rods @ L2-3-4
                              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                              2010 VBS Dr Luhmann Shriners St Louis
                              2017 curves stable/skeletely mature

                              also mom of Torrey, 12 y/o son, 16* T, stable

                              Comment


                              • Susan,
                                I am also having trouble with my legs. It started suddenly and I have good days and bad days. The bad days are rough and I really should have a walker for those days. But my leg problem can crop up without warning. For instance, I walked into the doctor's office for my routine injections and could barely walk when I left. I wanted the doctor to see this in action. I had a bad day and did a walk-in at the clinic so the nurse could see it. I was hoping the doc could spare 10 seconds of his time between patients just to see it, but he couldn't. It didn't matter, he saw it the next week. It is though I have 20# weights strapped to my ankles and my feet just drag and I have to swing my hips to take steps. I don't feel weight on my legs, but that's how a person with weights would have to walk. It's kind of scary for me. They are in process of trying to figure it out. All of my DNA tests have not come back, yet. By the time my father started having serious problems with his legs, he didn't live but about 10 years more. I'm only 45. I'd like to see more than 55 years of age. Hopefully they can figure things out for you and me both.

                                At least with you, it's not a neuromuscular degenerative disease. Hopefully, they will figure out if there is some kind of nerve blockage and be able to help you. My balance is terrible, too. We're all a mess. Get better soon!

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

                                Comment

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