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HELP!!! Lost my sagittal balance.....did anyone find it?

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  • #16
    Thank you Melissa and Gayle for your support.
    Mark and I attended a birthday party for a friend last night. I hate trying to talk with people standing up since I cannot see them without leaning back and then tilting my head back. My back starts to ache in a short amount of time with that posture and then I need to sit down. Dr. Hart said to "limit my activity" and that is very difficult for me. I need to keep up my strength in my legs from the spinal cord injury.
    Mark's open heart surgery is tomorrow and I need to focus on him.
    I need a break....I need to get back to my active life.
    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


    • #17
      I will keep both you and Mark in my prayers
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • #18
        Best wishes tomorrow

        Dear Susan,

        Best wishes tomorrow, I know you are scared for Mark but he is in excellent hands.

        Please let us know how it went when you can. I'll be thinking of you both.
        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


        • #19
          Best wishes with Mark's surgery Susan. I will be thinking of you both.
          Can't believe you have another broken rod. What's that saying if it wasn't for bad luck I'd have no luck at all?
          Maybe your surgeon could try stainless steel this time, my surgeon feels it is stronger then titanium. Drawback is your MRI's don't read too well. In my case he was not worried about that.
          Sending you love and hugs Susan, try to stay strong.
          Marianne
          rotoscoliosis, subluxation and spinal stenosis
          Surgery April 15, 2015 at age 67
          T11-L5
          Decompression with multiple discectomies
          Concord cages @ L2-3, L3-4, L4-5
          Osteotomies and local bone grafting
          Revision Feb.22, 2018
          Replaced rods
          Took out L5 disk to free up nerves
          Used BPM to help with fusing
          Fused T10-S1 with screws in pelvis

          Comment


          • #20
            Susan,
            I'm thinking of you today as you are going to be on the other end of the
            the surgery( the waiting part)I hope your husband Mark is out of surgery by now and all went well.
            I think how difficult this must be for you with all the issues you are having. Life just doesn't seem to give you a break!!!(anytime soon). I hope once your home you will have help to do what needs to be done
            with Marks recovery. Just want you to know I'm thinking of you. Praying for you both~~~ 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


            • #21
              Dear Susan,

              I'm glad surgery is over and went well. Go home and get some rest tonight, this must have been a really long day for you. The ICU nurses will take good care of him.

              Thinking of you both.
              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


              • #22
                Thanks for the well wishes. When I left, Mark was extubated and having an assortment of irregular heart beats. Al limbs moved and he replied "I love you" back to me. I melted.

                I am exhausted and in pain. One interesting side note from having dual broken rods: my hips now swish when I walk!

                L Thoracic pain at scapula level and sacral pain. I see the pain management doctor on Friday.

                Susan with a sexy swish
                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


                • #23
                  Susan I am thinking of both you and your husband. Sending healing thoughts.
                  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


                  • #24
                    Susan,

                    I suspect that many of us are wondering (and hoping for some good news). How are you and Mark doing?

                    mark

                    Comment


                    • #25
                      Hi swishy Susan, even with all of these obstacles you bring joy to us!
                      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


                      • #26
                        A resounding "Amen!" to that, Jackie. Susan- each day I have opened up this thread and each day I have been at a loss of what to say. You are my dear scoli friend and I am numbed by the unfairness of the continued problems you have experienced. And then I see (a few) others that continue to have problems also. My heart goes out to all of you beset with continued complications, and this is exactly why no one should ever take this surgery lightly. I know you never, in your wildest dreams, thought your road would lead in this direction. My thoughts and prayers are that this next surgery will see you turning that big corner and you will begin your way to a life that is acceptable to you. One that will allow you to emerge as the hero on the outside as well as the one we have witnessed on the inside. You are indomitable in spirit, face your adversary with tenacity, and your "presentation" has always been one with fighting the enemy with a source of super strength and with humor as your accomplice. You are a winner. Keep hanging in there. We love you. Hugs to both Mark and you.
                        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


                        • #27
                          Susan,

                          I hope your hubby is doing well. Were they able to go between the ribs or did they have to do a midline incision through the sternum? They have a new technique at our heart center where they don't crack the chest anymore. My step-dad had to be opened as it was a six-way. It's amazing what they can do now days.

                          I talked to my physiatrist/muscle specialist about my upper scapula pain and how my neck hurts by the end of the day. He prescribed me a semi-hard neck brace. It's made of a stiff foam material but also has hard plastic support. The orthotist was able to shave some spots down that put too much pressure on my collar bones and heat and mould the plastic in the back to support my head. I can tighten it as tight as I want, unlike the soft collar, because it has a tracheotomy cut-out and doesn't feel like it's choking me. I had INSTANT relief from those tired muscles. It's only for occasional use, but it might be worth a try for you. You can't turn your head or look up and down, but the trade off is worth it when my neck and shoulders are hurting. It couldn't hurt to ask???

                          I'm so sorry for your sacral pain. That is also one of my main areas. The pain goes all the way down both legs to my feet now. Fortunately for me the SI injections are still giving me some relief. Is there some kind of lumbar brace that goes above and below the broken rod that your doctor will prescribe for you until you can have surgery. These guys in orthotics are amazing. I have an SI belt that helps some when it's really bad, but I really hate wearing it. I'm wearing a lidocaine patch 24/7 over my sacrum and that has actually helped. I was waking up crying and unable to move before. But, I've found that it only works for me if I leave it on. If I do the 12 on and 12 off like you are "supposed" to do, it doesn't work. I told my doctor and he's totally fine with me wearing all the time.

                          Just some ideas to throw your way for some temporary things to take the edge off until you can get this fixed.

                          Take care,
                          Rohrer01
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • #28
                            Susan

                            Hoping things are ok right now.....

                            I have neighbors that are in their mid eighties that have been in and out of the hospital back and forth over the last few years. Spine surgeries done on Bob, and Dina with all sorts of vein surgeries in her legs. In and out of the hospital every month or so, and they seem to take all of it in stride like its nothing, its just a little visit to the hospital......I find it amazing on how positive they are and how they act like its nothing. Dina called me once, “I’ve been in the hospital for 2 weeks now, its nothing, I will be ok. Can you bring me a Wendy’s hamburger?” Oh man.....I don’t want to get caught red handed with this stuff....

                            I have to admit, I am guilty of sneaking things in like hamburgers and prime ribs and loaded baked potatoes. This I have done, and walking right by the nurses station and with a guilty face for some reason!

                            Since you’re a nurse, is this something you guys watch out for? (smiley face)

                            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


                            • #29
                              4 weeks between surgeries??????

                              Thanks everyone for your well wishes to Mark and me. He came home on Friday night and is trying to sleep in the recliner in the living room.

                              Dr. H called when I was sitting in the hospital parking lot on Thursday and patiently answered my questions as best that he could. He proposes a 2 day surgery, ant/lateral/posterior with repair of lumbar non-fusions and some new thicker rods. He thinks that me lumbar instability is caused by my infection. He mentioned 1-4 weeks between surgeries. I almost fell out of the car when he said "4 weeks". I called her scheduler and told her that I wanted the 1 weeks between surgeries. 4 weeks? Help me understand that time frame!!!!!!!!!!!!!!!!!Looks like probably a January revision surgery.

                              Swingin' 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


                              • #30
                                Originally posted by susancook View Post
                                Thanks everyone for your well wishes to Mark and me. He came home on Friday night and is trying to sleep in the recliner in the living room.

                                Dr. H called when I was sitting in the hospital parking lot on Thursday and patiently answered my questions as best that he could. He proposes a 2 day surgery, ant/lateral/posterior with repair of lumbar non-fusions and some new thicker rods. He thinks that me lumbar instability is caused by my infection. He mentioned 1-4 weeks between surgeries. I almost fell out of the car when he said "4 weeks". I called her scheduler and told her that I wanted the 1 weeks between surgeries. 4 weeks? Help me understand that time frame!!!!!!!!!!!!!!!!!Looks like probably a January revision surgery.

                                Swingin' Susan
                                Susan...

                                When we have someone who is medically frail, they are sometimes scheduled with a month or more between surgeries, to give them time to completely recover. The one good thing about that scenario is that the patient gets to go home and lead a normal life before it's destroyed again. ;-) Most others have 1-4 days in between.

                                Hope you can get a shorter schedule figured out!

                                --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

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