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  • #31
    Jackie

    Chances are you have some excellent doctors, with a challenging situation.....There is only going to be so much they can do. These specialists really want to help, the good docs have a lot of compassion, its why they become doctors. You have to sense that compassion, otherwise you have the wrong doctor. I never met my GP, he used a PA. I though to myself, come on, don't you want to even meet your patients? This happens a lot. Obviously, he is not my GP anymore.

    I remember keeping everyone at arms length during my recovery, we are so delicate in immediate recovery....The car trips can be hard.

    My last dive was at Coiba Island, Panama. That was on one of my South America trips, Sept 2003. Over the last few years I have been working for some crazy reason. Today, I told everyone that I want to retire. I have been dropping hints for around a year, so it wasn't too much of a shock. I would like to dive, but its not a priority. I have had incredible ski days, and dive trips. I am truly spoiled and have seen Mr Big a few times. No Orcas, that would scare the hell out of me because they are too smart. I also have to do a water launch, I will not stand up with the tank on my back. I also have a lot of trouble with my fins. I dropped mine a few times in Panama, and the boat boys free dive deep for tips. He he. I cant see down being fused up so high, and getting the fins on right can be tricky in the ocean bobbing up and down.

    Fortune cookies are not reliable....Instead of the Chinese girlfriend, I ended up with Japanese twins.

    Somebody has to laugh on that one! Comedy takes a lot of effort.

    I've been looking at willow bark that Dr T recommends. Anyone try this? You make a tea out of the bark. Tastes terrible. This has been used for pain since Hippocrates.
    https://www.youtube.com/watch?v=5H__1_8ur8Q

    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


    • #32
      You are right there isn't any looking down with the fusion. It is a challenge to put on shoes much less being in water. Scoliosis just keeps on challenging us. I think waiting to have the surgery all of bones and muscles worked one way. Then the surgery puts out body's in a different place. I wonder if it isn't really hard on the joints and muscles. And as we get older, maybe it is even harder on our joints because of the fusion.
      I have been really pleased with this new team of doctors. Maybe because they are so young and maybe up to the challenge. It is a large group and I can hear them bounce ideas off of one another.
      And just think they were willing to do these last 2 surgerys without any narcotics during surgery. I have had such bad reactions to narcotics that they did it with local anesthetic and twilight. I was told by my surgeon it was the first time the doctors at Rush were able to do it without narcotics. I made it and so did they. And they learned that it could be done. Teaching hospitals seem to be more willing to try different things.
      I am sure they would be using narcotics if they could. It would be cheaper then this pump. But oh well.
      I guess we just keep on going.
      If you decide to retire good for you. What would you like to do?
      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


      • #33
        That's a good question. For those with a bucket list, there are all sorts of plans. I don't have a bucket list, so that actually makes it easier.....Travel in my RV to neat spots. Walk and reflect on things....I don't know how the hiking will go since my ankles, knees, and hips feel compressed like I have someone sitting my shoulders now and my neck is now delicate. I have always winged a lot of my trips without much planning....

        RV travel is great for scoliosis patients....You have the option to lay down in your customized bed any time you want. Air travel is never an easy thing, sometimes it takes me a day or two to recover from long plane rides. I was offered a position in the Orient and turned it down because of all the flights.

        I am glad you are happy with your team. I also had a young (freshly trained, new technique) surgeon which weighed on my mind.....I chose young.

        If you have 3 surgeons like I had, young, middle aged, and elder, you have all your bases covered. (smiley face) I had around 12 doctors make individual statements in my hospital reports. Doctors I never met. It was quite a team.

        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


        • #34
          Do you think some of the rest of our joints bare the burden of a fixed spine? I've heard others talk of their knees and hips. I do believe the long fusions put a lot of strain on the hips.
          The RV sounds like a perfect way to travel. And we live in a country of amazing possibilities.
          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


          • #35
            Yes and no. This is going to be hard to prove....(Talking about hips and knees) There should be a database setup that we all report to for the rest of our lives.

            I am the absolute wrong person to ask since I was overly athletic all my life. I destroyed my joints skiing hard. I would do countless jumps each day, which would be like jumping off the roof of your house 50 times per day, 4 days per week for decades. When you think about the high amounts of forces I subjected my body to, it truly is amazing how things held up. I started skiing in 1962, and doing 30 foot jumps by the time I was 7.

            Our joints also just wear out from degeneration.....Its the age process.

            Why are old cells more vulnerable than young cells? This is the question.
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685272/

            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


            • #36
              Jackie

              I hope things are well with you and I have been wondering how your arachnoditis management has been coming along?

              You also have been through the ringer.....and how could I forget you? The occasional peep, or post, or e-mail is always nice. You know, I am alive, or I am dying fills us in.....we can handle it. There is also value in a collective prayer effort if need be. Mine are powerful because I don't ask anymore since I used my bottle up years ago with my surgeries and I try not to be overly greedy with the Lord....


              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


              • #37
                It has been awhile

                It has been awhile since I posted any information. I do have a pump in place to help the arachnoiditis.
                Now another big problem.
                About 10days ago I was involved in a horrific car accident. And when you have a fused cervical and thoracic there is no give. So I broke my cervical in multiple places. It was the most horrid pain i have ever felt. I was praying to die.The paramedics had a terrible time getting me out of the car.
                The extreme pain was from my neck to my waist. Instant pain like being crushed.
                The following day(Sunday) the doctors did surgery. They had to remove a piece of bone that partially severed the nerve to my right arm. They repaired it.Also extended rods to connect the.cervical and thoracic together. The surgery reduced the pain.by half.All of this with nothing but Tylenol. I get too sick on anything else I need a new car.
                But the jolt is unbearable. I am still in rehab..what an experience.
                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


                • #38
                  Wow Jackie, I cant imagine what this feels like. You are no stranger to pain.

                  Try to take it easy right now.....deep breaths, healing thoughts

                  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


                  • #39
                    Thanks Ed, everyone keeps telling me how lucky I am. And I know that's true. Had the broken piece of bone gone the other way it would be in the spinal cord.
                    The pain was instant and all consuming. I knew I was truly hurt. I had 2 front impacts the other car and my car was pushed to the right and into a brick building.At 30 miles an hour and then an instant stop.Unbearable pain.
                    I was always awake.even trying to tell the paramedics that my whole spine is fused and they were going to have to remove me from the car in one unit.
                    This has been a long 2 weeks.
                    But in case anyone is wondering what happens in a car accident with a fused spine ---the area above breaks.
                    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


                    • #40
                      Originally posted by jackieg412 View Post
                      But in case anyone is wondering what happens in a car accident with a fused spine ---the area above breaks.
                      Breaks in the area of fusion due to trauma are pretty rare. It could be because it was such a major impact, or it could be because that area was under stress.
                      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


                      • #41
                        Jackie, 30 miles per hour into a hard solid brick wall is extreme. Sigh.....

                        You did a rod extension along with the repair and recovered on Tylenol?

                        I would probably be standing in the shower hitting that with some hot water.....I remember when I was in the hospital and the nurse asked me if I wanted to take a shower. We walked over and I asked her if it was ok if I drained all the hot water from the whole hospital. Ha ha

                        It improved things instantly.....I was around 8 days post at that point.

                        When do you think they will release you to go home?

                        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


                        • #42
                          i will be going home tomorrow after two weeks in the hospital and rehab.. I have to say a front end impact into a brick wall is unbearable painful.. There is a long road ahead. The pain pump survived.It felt like the seat belt crushed it.. All the earth devices worked. The car is a total loss.
                          To add insult--the other driver who caused the accident is not licensed or insured. This should be fun to dig through a mess.
                          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


                          • #43
                            Only the tough survive!

                            Oh my, Jackie! I do not check the forum very much.....but I need to send you get well wishes and hope for decreased pain and increased mobility in the future. The reason that I shy away from the forum is that for many, I am their worse nightmare. Scoliosis surgery 2013 T3-sacrum, THEN in the 4 years afterwards: ventral hernia repair, spinal cord injury with resulting partial paraplegia, pulmonary embolism, spinal infection with p. acnes, 3 revisions now fused T1-sacrum. I currently have increasing numbness and pain along my Right L4,5. I use a wheelchair and crutches. Life goes on, there really is not a choice.

                            We are a pair, right? So sorry about the MVA. I cannot imagine how scared you must have been.

                            Hugs to 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


                            • #44
                              Thanks Susan, yes it is a long slow recovery .the pain was the worst i have.ever felt.I felt it right away after the car stopped. I actually prayed to die. It was all consuming.I made it through it.My family has come to help
                              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


                              • #45
                                Originally posted by jackieg412 View Post
                                Thanks Susan, yes it is a long slow recovery .the pain was the worst i have.ever felt.I felt it right away after the car stopped. I actually prayed to die. It was all consuming.I made it through it.My family has come to help
                                Just a quick update. After the surgery and rehab stay i knew something was wrong. I had heard a pop when I was asked to push up with my heels in bed. I told the staff. It was hard to know if it caused more pain because there was so much pain. As the six weeks past to my first check up i realized that I couldn't keep my head up or eyes focused forward.
                                Well the X-Ray proved what I thought, I had indeed broke the rod connecting the cervical to the thoracic.
                                It was so concerning to the Dr that he did surgery that afternoon. In the office he said it would be about 20 minutes but the surgery was 5 hours. After speaking to the Dr assistant, I was told he reinforced everything in the cervical thoracic fusion. My brace is a whole upper body brace.
                                It feels better now. But I am fused now c=4 to pelvis.
                                The car accident was September 29th but it just keeps giving problems
                                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

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