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

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  • Thoughts on recovery, pain, and trying to live a normal life

    I am about 9.5 months out from fusion surgery and have been trying to alter my expectations. I am doing quite well, but somehow had the unrealistic expectations that all of this would "settle out" and that I would have the relatively pain free life that I had 5 years ago. Now I am still dealing with headaches and seeing a neurologist for that. She thinks that there might be a cervical component to them. My neck does hurt a lot, mostly in the late day and evening. Sometimes the pain brings me to tears which I have discovered is difficult to drive through. I do PT and just received a cervical traction unit which I will try. I need to try my TENS unit on my neck. I do not take analgesics for my neck pain and doubt that meds short of high dose narcotics would do much to relieve my pain.

    My hernia hurts periodically and I am on my second wind of attempt. I really want to take care of it as I am tired of looking like I am having my menopausal baby and having lower abdominal burning pain.

    There are hours that go by when I feel "normal" and forget that I have had extensive spinal surgery. That is awesome and the time seems to stretch out more and more. That's good! Recovery takes longer than I had hoped, for me it seems that I am on the 2 year plan. The muscles in my upper back feel pulled although I do not remember a sudden pull.

    So, I do my PT exercises and continue with my weight loss efforts. I am still pleased with my surgical results and memories of lying on the floor preop in pain are fading.

    I have survived, and the process for me was a survival process. I have great support from my pain management doctor at OHSU who has done various procedures to decrease my pain. I fear the future possibility of having neck surgery.

    I am in Hawaii now for 5 weeks and the aloha spirit should improve my outlook. It is 79 degrees and sunny outside. What am I doing on the forum? Bye!

    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


    • Lucky you in such a beautiful place.
      Susan--br careful with the tens unit by your cervical. I think that it can't be used by the spine.
      The cervical pain is tough--I am going through it again. It seems that c7-t-1 is my problem.

      Any time my neck is forward there is increased pain. By afternoon--all I can do is lay my head down.

      Merry Christmas to 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


      • Jackie, why don't you think that the TENS unit cannot be used on the spine?

        I agree with the downward glance being the most painful. If I use my computer for any length of time, I am toast. Lower back pain was tiring, but neck pain seems worse. It is difficult give the neck a rest. I think that maybe my head is too heavy.

        I wish that I could share some sunshine with you!

        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,
          You can wear tens unit by the spine--but not on the spine. I need to look up how close you can come to the spine and be safe. I am unsure if the electric paulses from the unit can mess with the way that nerves feel things. I agree that it feels as if the head weighs too much. Mine needs to loose weight.{Hopefully not brains}

          I am still going to Pt and will ask tomorrow about how close to the spine you can come with the tens unit. I will get back to you.

          Yes send sunshine--I live near Chicago and we are cloudy with highs in the teens tomorrow. Lovely!
          T10-pelvis fusion 12/08
          C5,6,7 fusion 9/10
          T2--T10 fusion 2/11
          C 4-5 fusion 11/14
          Right scapulectomy 6/15
          Right pectoralis major muscle transfer to scapula
          To replace the action of Serratus Anterior muscle 3/16
          Broken neck 9/28/2018
          Emergency surgery posterior fusion C4- T3
          Repeated 11/2018 because rods pulled apart added T2 fusion
          Removal of partial right thoracic hardware 1/2020
          Removal and replacement of C4-T10 hardware with C7 and T 1
          Osteotomy

          Comment


          • Susan,
            I am sure you are enjoying the warm sunshine in Hawaii. It's really cold in the Midwest. I hope that you can get your cervical pain under control. Dr. Lenke told me to put everything at eye level, such as the computer and books, but I am sure you know that. I think that it was two years before I realized I wasn't thinking about my back every waking moment. Believe it or not, you are still early in your recovery. I continued to have fewer and fewer aches even after 24 months and now at almost 3 years, I seldom have an ache. I probably have fewer pains than the majority of 63 year olds and am so thankful that I had surgery 3 years ago. Good luck with the hernia and cervical pain.
            Karen

            Surgery-Jan. 5, 2011-Dr. Lenke
            Fusion T-4-sacrum-2 cages/5 osteotomies
            70 degree thoracolumbar corrected to 25
            Rib Hump-GONE!
            Age-60 at the time of surgery
            Now 66
            Avid Golfer & Tap Dancer
            Retired Kdgn. Teacher

            See photobucket link for:
            Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
            Before and After Picture of back 1/7/11
            tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
            http://s1119.photobucket.com/albums/k630/pottoff2/

            Comment


            • Thanks Jackie and Karen for your support. I am very impatient. My L scapula area is very painful and I did not have an injury. Unsure what that would be. I can't imagine that there is anything wrong with my fusion. Maybe I just need some sunshine! I will send both of you some aloha spirit.
              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,

                Thanks for the sunsine. But can you send a palm tree too? I love palm trees.

                About your left scapula----my right is my issue--and it is the reason for a new round of PT.
                we are hoping that it helps the neck issue. It seams as that when my scapula is
                acting up--my neck hurts even more.Is that the same with you?

                I will ask today about tens unit. The PT hooks mine on for me --by the scapula.
                Might help you too.
                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


                • Originally posted by jackieg412 View Post
                  HI Susan,

                  Thanks for the sunsine. But can you send a palm tree too? I love palm trees.

                  About your left scapula----my right is my issue--and it is the reason for a new round of PT.
                  we are hoping that it helps the neck issue. It seams as that when my scapula is
                  acting up--my neck hurts even more.Is that the same with you?

                  I will ask today about tens unit. The PT hooks mine on for me --by the scapula.
                  Might help you too.
                  Thanks Jackie for the information! Send me a PM with your address and I will at least send you a postcard of a palm tree.

                  It is morning, so my scapula area feels pretty good right now. This probably sound very unrealistic, but I worry that it might be a pseudoarthrodesis......call me a pessimist. Hope that your exercises help it. I have some exercises to do. I already do so many different exercises. My life is a series of exercises!

                  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 did send a PM to you but I checked on the tens unit and was told not to put it on the spine--but along side it. as far as the neck the pt recomends that you put it more on the upper back ---near the shoulder area. He said it did not do anything for the bone that was why not to put it on the spine--but it helps the muscle.
                    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


                    • Thanks Jackie. What exercises are you doing for your scapula pain? 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
                        Thanks Jackie and Karen for your support. I am very impatient. My L scapula area is very painful and I did not have an injury. Unsure what that would be. I can't imagine that there is anything wrong with my fusion. Maybe I just need some sunshine! I will send both of you some aloha spirit.
                        Susan
                        Hi Susan in Hawaii, For me, it was my right scapula that was painful, but mine started at about 6 months post op and only lasted about one month. I hope your pain goes away soon. Maybe if you go swimming in that beautiful warm water in Hawaii, the pain will go away soon. Where in Hawaii are you?
                        Sally
                        Diagnosed with severe lumbar scoliosis at age 65.
                        Posterior Fusion L2-S1 on 12/4/2007. age 67
                        Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                        Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                        New England Baptist Hospital, Boston, MA
                        Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                        "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                        Comment


                        • Aloha, Sally! We are on Oahu near Kailua. Next we head out to Kauai. It sounds so non-supportive to say, but your having the same problem makes it feel OK, especially your saying that it went away after a month. I have had the pain for about 6 weeks, so maybe I am at the end of it.

                          I am certain that I am on the 2 year healing plan.....with 6 months of patience!

                          Susan.....and her menopausal pregnancy
                          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


                          • Are you still in beautiful Hawaii??? It is getting cold here again.I am about to go take a very hot bath---but as far as the scapula--my Pt is doing some exersises with elastic bands. also an arm bike.. I guess--according to the Pt--I have lost the muscle from my right scapula area. It has always given me a problem{since the surgery}--the pt used to have to pop it out for me. He says that it is an area of not too much muscle. He calls me little all of the time. Now I guess I lost the little bit of muscle that was there--it feels as if the scapula is trying to move across the bone and gets caught. I keep having him pop it out--but it won't stay. I can't manage to do it myself. Any ideas?? I guess I have lost a lot of strength in the right arm and I am right handed. I know it isn't a good thing.
                            I am back to dealing with Workers Comp as they still have to pay for medical related to my spine. I hope it all goes through OK. We do know how these bills can add up.
                            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


                            • Jackie, the popping sounds awful! I hope that you find some 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


                              • Limitations in paradise!

                                Aloha, I am on vacation in Hawaii and have noted some additional limitations and am hoping that someone will be able to help me figure these out:
                                * I have great difficulty putting on my flippers in the water or out of the water when I go snorkeling
                                * I have a lot of problems getting up and down on the beach mat or towel
                                Suggestions?
                                Thanks, Susan....not looking very sexy on the beach with my hernia!
                                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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