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  • Imbalance

    Originally posted by RitaR View Post
    I also am faced with severe Sagittarius imbalance. Iíve also got at least couple herniated discs, severe nerve problems. Pain,is beyond belief! Laying down a lot. Wonder, has anyone had this kind of revision surgery? Weíre talking about removing all my hardware and starting anew. I have got to do something or Iím gonna be in bed permanently!
    Hi Rita...

    You posted this message to someone else's thread, so I moved your post to a new thread.

    Assuming you mean sagittal imbalance. :-)

    It's a relatively common condition amongst the group. If you're interested, do a search on flatback (which is one type of sagittal imbalance). I had surgery for it in 2011. I ended up with some medical complications, but it solved my back and leg pain.

    --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

  • #2
    Thank you Linda. Yes, Sagittal imbalance. Silly word correct. Iím seeing a Dr at Johnís Hopkins in Baltimore. He said my back is so bad only thing he would even recommend is total hardware removal and imbalance fixing. Iím having soooo horrible pain and nerve problems, pain in legs. Have fallen numerous times due to imbalance. Cant sleep at night. Laying down 5-6 times a day just to make it thru the day.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

    Comment


    • #3
      Originally posted by RitaR View Post
      Iím seeing a Dr at Johnís Hopkins in Baltimore. He said my back is so bad only thing he would even recommend is total hardware removal and imbalance fixing. Iím having soooo horrible pain and nerve problems, pain in legs. Have fallen numerous times due to imbalance. Cant sleep at night. Laying down 5-6 times a day just to make it thru the day.
      Wow Rita, you have really been struggling....

      Have they found any broken hardware? Are you leaning forward?

      Are you flying out to Johns Hopkins for diagnostics and tests?

      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


      • #4
        Originally posted by RitaR View Post
        Thank you Linda. Yes, Sagittal imbalance. Silly word correct. Iím seeing a Dr at Johnís Hopkins in Baltimore. He said my back is so bad only thing he would even recommend is total hardware removal and imbalance fixing. Iím having soooo horrible pain and nerve problems, pain in legs. Have fallen numerous times due to imbalance. Cant sleep at night. Laying down 5-6 times a day just to make it thru the day.
        Hi Rita...

        Implant removal and osteotomies to restore balance is essentially the only appropriate treatment. Dr. Bridwell wrote an article a long time ago, that describes the condition and treatment. You might find it helpful. https://www.spineuniverse.com/condit...ttal-imbalance

        --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


        • #5
          Surgery

          Originally posted by LindaRacine View Post
          Hi Rita...

          You posted this message to someone else's thread, so I moved your post to a new thread.

          Assuming you mean sagittal imbalance. :-)

          It's a relatively common condition amongst the group. If you're interested, do a search on flatback (which is one type of sagittal imbalance). I had surgery for it in 2011. I ended up with some medical complications, but it solved my back and leg pain.

          --Linda
          Who did your surgery Linda? I just spent 2 months seeing dr in Baltimore and he dumped me today. Iíve got to have something done. My pain is horrible! I canít do anything. Wakes me up at night. Some nights I never sleep. I need help.
          Rita Thompson
          Age 46
          Milwaukee Brace wearer for 3 years in childhood
          Surgery Mar 1st - 95 degree thoracic curve
          Surgery by Dr. Lenke, St. Louis, MO
          Post-surgery curve 25-30 degree

          Comment


          • #6
            From Rita T

            Well, Linda, who did your revision surgery in 2011? Just got dumped by another dr today. Iím in terrible pain and no one wants to do anything to help me. I was talking with Dr in SannFrancisco but he stopped communication. I consulted dr in Baltimore. He dumped me today. Iím in terrible pain. Canít do anything without horrible pain. I lay down 4-5 times a day. I appreciate any assistance.
            Rita Thompson
            Age 46
            Milwaukee Brace wearer for 3 years in childhood
            Surgery Mar 1st - 95 degree thoracic curve
            Surgery by Dr. Lenke, St. Louis, MO
            Post-surgery curve 25-30 degree

            Comment


            • #7
              Originally posted by RitaR View Post
              Well, Linda, who did your revision surgery in 2011? Just got dumped by another dr today. Iím in terrible pain and no one wants to do anything to help me. I was talking with Dr in SannFrancisco but he stopped communication. I consulted dr in Baltimore. He dumped me today. Iím in terrible pain. Canít do anything without horrible pain. I lay down 4-5 times a day. I appreciate any assistance.
              Hi Rita....

              There's only so much any surgeon can do remotely, so I think you should try to find someone local. If that's not possible, start thinking about who you can travel to see. The fact that multiple surgeons have "dumped" you might be because you're not local to them, or that you're not communicating effectively. The fact that Dr. Lenke did your last surgery may be intimidating for surgeons. If they think that he can't fix you, they may feel they don't stand a chance to help you out. My advice would be to sit down and write a summary of your history and your current issues. Try not to catastrophize what you're going through. I know from my own history, that symptoms can change quickly. You don't need to talk about pain you've had in the past, as it's probably irrelevant.

              My 2011 surgeon was Sigurd Berven at UCSF.

              --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


              • #8
                From Rita R

                You have no idea how miserable I am. I have sooooo terrible pain. Nerve pain in both legs. Numb right foot. Falling plenty of times. Wakes me up at night. Plenty of nights I get no sleep because of pain and muscle spasms. Just got dumped by dr at Johnís Hopkins. He has nothing to offer me but good luck. I just do not know what to do. Iím getting worse and the pain is worsening, which I already canít imagine.
                Rita Thompson
                Age 46
                Milwaukee Brace wearer for 3 years in childhood
                Surgery Mar 1st - 95 degree thoracic curve
                Surgery by Dr. Lenke, St. Louis, MO
                Post-surgery curve 25-30 degree

                Comment


                • #9
                  I had communicated with Dr Berven and then he stopped calling one day. Iíve never heard from him since. He ordered many tests and I obtained all he asked for.
                  Rita Thompson
                  Age 46
                  Milwaukee Brace wearer for 3 years in childhood
                  Surgery Mar 1st - 95 degree thoracic curve
                  Surgery by Dr. Lenke, St. Louis, MO
                  Post-surgery curve 25-30 degree

                  Comment


                  • #10
                    Hi Rita, you can be in a very hard place right now. But not all Doctors can easily figure out how to help. Keep all of your tests,reports and office notes.
                    Before I saw my surgeon ( years ago), I was requested to send everything into him before he would see me. I did that and got a call in a few days to schedule an appointment.
                    He did no revision at that time, but sent me to a pain specialist. I had a pain pump placed.
                    After I broke my neck in an auto accident, that required multiple attempts to fix, that is when he did the revision. That isn't anything anyone would wish.
                    My team of doctors is from Rush University in Chicago. The entire neurosurgery team is excellent in their care. His name is Dr. Ricardo Fontes..
                    A fantastic doctor and a wonderful person. I have been so well treated.
                    I did see him on Monday and he is very helpful.
                    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


                    • #11
                      Originally posted by RitaR View Post
                      I had communicated with Dr Berven and then he stopped calling one day. Iíve never heard from him since. He ordered many tests and I obtained all he asked for.
                      Rita...

                      I worked for Dr. Berven for many years. He's a great communicator when he has time. When he's crazy busy, he pretty much ignores everyone. You might want to keep trying, but the problem might not be revealed in imaging.

                      If I were you, I'd probably try to find a good pain specialist. Unfortunately, a lot of people have pain that is never figured out. You should also check out Dr. David Hanscom's newsletter http://www.backincontrol.com/. He was a spine surgeon who had back pain himself. He has a lot of insight, and good suggestions for dealing with chronic pain.

                      --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


                      • #12
                        Linda, do you think I should contact Dr Berven back? We had talked many times virtually and I did all he recommended test-wise for me. But, one day, he just never called me back anymore. Iíve read online he knows a lot about sagittal imbalance repair. I would be more than willing to travel to see him if necessaryÖwhatever it takes. He already has all my X-rays, records, etc.
                        Rita Thompson
                        Age 46
                        Milwaukee Brace wearer for 3 years in childhood
                        Surgery Mar 1st - 95 degree thoracic curve
                        Surgery by Dr. Lenke, St. Louis, MO
                        Post-surgery curve 25-30 degree

                        Comment


                        • #13
                          Originally posted by RitaR View Post
                          Linda, do you think I should contact Dr Berven back? We had talked many times virtually and I did all he recommended test-wise for me. But, one day, he just never called me back anymore. Iíve read online he knows a lot about sagittal imbalance repair. I would be more than willing to travel to see him if necessaryÖwhatever it takes. He already has all my X-rays, records, etc.
                          It wouldn't hurt to try. You just need to catch him at the right time. I never checked, but I'm sure he gets hundreds of emails every week, so when he's busy he has to pick and choose the ones that are important to him. When you write to him, be sure he understands that you're willing to travel to see him if he thinks he can help you. One thing that's really important about him is that he's very conservative. If he's not reasonably sure he can help you out, he won't even try.

                          --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


                          • #14
                            Thank you Linda. I will reach out to him again. Iíve got to try.
                            Rita Thompson
                            Age 46
                            Milwaukee Brace wearer for 3 years in childhood
                            Surgery Mar 1st - 95 degree thoracic curve
                            Surgery by Dr. Lenke, St. Louis, MO
                            Post-surgery curve 25-30 degree

                            Comment

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