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  • Surgery 2 years ago

    Good afternoon. My first post so bear with me. Iíve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months Iíve been in excruciating pain! I canít stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear itís the rods broken again. Again? I donít know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. Iíve gone down the pity road many times! Why me! Anyone have their rods break more than once?
    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

  • #2
    Rita

    I'm in shock.....why didn't you post? its been around 7 years....

    I remember your huge curve, Dr Lenke did your initial surgery, and you were good a year after. What did he say 2 years ago when your rods broke?

    Your the 2nd one here lately that broke rods many years (7) after initial fusion.

    I am so sorry about all of this....

    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


    • #3
      Originally posted by RitaR View Post
      Anyone have their rods break more than once?
      FLT, Fierce like Tiger broke her rods twice at age 25. She wasn't fusing. She finally went to Twin Cities Scoliosis Center since she lived in Iowa and they fixed her up. I remember specifically since she mentioned that her surgeon told her that you just don't slap BMP on and expect it to work. BMP is only "on label" or FDA approved for ALIF otherwise, its off label for scoliosis surgery. I had a BMP ALIF procedure so I remember these things.

      Again, a lot of years has passed since she was done. I hope she is ok.

      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
        Surgery two ago

        hours for sx. He said he was very scared by the amount of blood I lost. I spent 3 days in icu after sx. Recovery went very slow. I always had a lot of pain it seemed. Then a few months ago I started having horrible pain. Itís been ever increasing ever since to the point of tears at times. I called St. Louis and they gave me arch appt time. Iím not sure I can make it that long. Pain is horrible!
        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


        • #5
          Rita,

          If it gets out of control, go to the hospital. I suppose they will knock you out with an injectable for a pain break.

          Can you arrange to see a pain specialist next week? Have you tried a Fentanyl Patch?

          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


          • #6
            Iíve tried otc patches but not Fentanyl. Iím going to call Dr Lenke tomorrow and see if he will see me. I really liked him. I just canít imagine having sx in NY, ie how to get home. But, worry about that then I guess. I have to do something!
            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
              Fentanyl is powerful stuff.....That's why they put it in a patch.

              Why didn't you let Dr Lenke know 2 years ago before your rods were removed? Was it because he moved to New York?

              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


              • #8
                Originally posted by titaniumed View Post
                Fentanyl is powerful stuff.....That's why they put it in a patch.

                Why didn't you let Dr Lenke know 2 years ago before your rods were removed? Was it because he moved to New York?

                Ed
                Yes, I didnít relish the idea of traveling to NY, expensive trip. And, then youíd have to go back for the surgery. And, not to mention, after surgery how do u get home when u can barely walk.
                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
                  Iíve had a couple incidences where the pain is sooo bad that itís almost like a lung deflates. Is that even possible? If a rod is broken can it impinge on a lung? Because at that particular time it took my breath away! Iím not one to whine, but this is worst pain Iíve ever had!
                  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
                    Originally posted by RitaR View Post

                    Yes, I didnít relish the idea of traveling to NY, expensive trip. And, then youíd have to go back for the surgery. And, not to mention, after surgery how do u get home when u can barely walk.
                    I see.....Surgeries are not cheap. But you should or should have let him know. I would consider him your surgeon and they do need to know about our complications regardless of time frame, and location. He could have assisted your local surgeon without traveling.

                    The past is the past....

                    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


                    • #11
                      Originally posted by RitaR View Post
                      I’ve had a couple incidences where the pain is sooo bad that it’s almost like a lung deflates. Is that even possible? If a rod is broken can it impinge on a lung? Because at that particular time it took my breath away! I’m not one to whine, but this is worst pain I’ve ever had!
                      Rita, If this is happening, I would see your GP or a local doctor tomorrow. Breathing is serious. Your GP should take you right away or refer you right away. Tell them its extreme lung related pain events.

                      This could be a non-scoliosis related lung problem, and they can see a lot with just a simple x-ray.

                      "Extreme pain" is an indicator that something is seriously wrong. Pulmonary complications kill people.

                      Self diagnosis is fruitless.

                      Ed
                      Last edited by titaniumed; 02-17-2019, 11:47 PM.
                      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


                      • #12
                        I tried calling Dr Lenke office but it was closed today due to holiday. I called dr Guptas office and left a message to see if they can move my appt up at all. Iím hopeful theyíll get back with me tomorrow. I did not sleep well last night at all.so much pain! I will keep u posted when I hear from them tomorrow. Thank you for your concern. If I donít hear by noon I will be calling them tomorrow. Itís certainly not good the degree f pain Iím in.
                        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
                          Rita, right now, this is a local problem. Dr Lenke's office will tell you to deal with it locally. I would wait till this emergency is over.

                          If you call Dr Gupta's office, don't leave anymore messages, call until you talk with someone, tell them you are having elevated lung related pains and are having problems dealing with it, you need to see someone quickly, today. now. You have to be assertive on the phone. Don't you have his nurses or assistant's phone number? This establishing of contact, communication method is important.

                          Your not flu or cold sick are you? Its been colder than Antarctica in your neck of the woods lately.

                          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


                          • #14
                            I took you allís advice and called Dr Lenkeís NY office today. Iím getting X-rays done ASAP and sending to him and Iím set up with tentative appt to see him on Apr 4th in his NY office. But heís gonna call me once heís looked at the xrays. Then weíll know whatís what andgo from there. Iím calling about my xraystomorrow. I appreciate all your help and i will keep u posted.
                            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


                            • #15
                              Surgery 16 mths ago.

                              Originally posted by RitaR View Post
                              Good afternoon. My first post so bear with me. Iíve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months Iíve been in excruciating pain! I canít stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear itís the rods broken again. Again? I donít know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. Iíve gone down the pity road many times! Why me! Anyone have their rods break more than once?
                              Hi,

                              I too had surgery with Dr. Lenke, 16 maths ago.- Oct 2017. I am also in relentless pain and think my pain is coming from the hardware. I am considering having all of my hardware removed. Is this something you have ever considered? All of my test show that nothing is wrong but I do not want to live with this type of pain.

                              Lisa

                              Comment

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