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14 months after surgery and need revision 😒

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  • #16
    Revisions are a walk in the park compared to the original one. I have had 4 revisions. So sorry that this happened. Send healing thoughts, 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
      Back from seeing the Surgeon in Toronto, I had a catscan there and was fitted for a Jewitt Brace. I have to leave it on except for sleeping.
      And come back to see him in a month.
      It is not very comfortable and hard to get up and down with it on. But at least it is not a solid brace so should not be as hot as the one Susan had to wear.
      Doc said when this is healed I will be scheduled for my revision surgery. Can't wait to get this over with and get on with my life, I will be 70 tomorrow! Oh how time flies.
      Wishing you all a wonderful summer.
      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


      • #18
        Originally posted by Marianne View Post
        Back from seeing the Surgeon in Toronto, I had a catscan there and was fitted for a Jewitt Brace. I have to leave it on except for sleeping.
        And come back to see him in a month.
        It is not very comfortable and hard to get up and down with it on. But at least it is not a solid brace so should not be as hot as the one Susan had to wear.
        Doc said when this is healed I will be scheduled for my revision surgery. Can't wait to get this over with and get on with my life, I will be 70 tomorrow! Oh how time flies.
        Wishing you all a wonderful summer.
        Happy 70th Birthday! You caught up with me!
        The good side of a brace is that it greatly decreases the fear that if you were in a car wreck or someone bumped into you at the supermarket, that it would hurt.
        "It is what it is".
        Hoping for a cool summer!
        Sending you healing thoughts,
        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


        • #19
          Still waiting.

          It has now been 18 months since I was told I need revision surgery and still no date.
          I spoke to my surgeon's secretary this morning and she told me it will be a while yet. They have no beds in the hospital, people are in halls and any where else they can put them. And that would not be acceptable after my surgery.
          So we will just have to wait until there are beds and nurses available.
          I am back to using a walker when going out, I can walk with a cane when we go visiting and mostly sitting around.
          Sorry just needed to vent.
          Ed I send you a PM yesterday.
          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
            I think that is terrible that you still don't have a date for surgery. I guess we shouldn't complain about our healthcare in the US. I feel for you.
            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


            • #21
              Originally posted by Marianne View Post
              Ed I send you a PM yesterday.
              Marianne, I replied to your PM. Please use my e-mail address as the PM system limits after 3 sentences.

              Just respecting the privacy of the PM system.

              Thx
              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


              • #22
                Thanks Karen........

                Ed on the forum is fine thanks.
                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


                • #23
                  Marianne, so sorry that your back has caused more problems and that surgery has been delayed. I have also had a roller coaster ride to a proxy of wellness. Take care of yourself and keep putting one foot in front of the other. Hoping that you have a surgery date soon.
                  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


                  • #24
                    Thanks Susan, yes you are trooper you have gone through more then any one else.
                    And always manage to keep cheery.i hope all will go well for you.
                    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


                    • #25
                      I am sorry to hear you have further complications- hope you get a date soon.

                      Life in UK as regards hospital appointments and surgical dates is pretty much the same. Due to flu and general lack of funding all routine/elected ops were cancelled for Jan 18 and no new dates given out yet for the re-scheduling ( or how in fact they will re-schedule.)

                      I was most interested in your actual appointment with your surgeon before he agreed to a further CT scan. I hear countless people in UK who after a fusion can get no-where with following up when they have pain. Revision surgery seems so rare here- in fact it and further scans etc. are actively discouraged and people have to go to such extreme lengths to get re-seen by their surgeon.

                      I am particularly scared as my consult is actively putting me off surgeon and has been doing for some years saying that surgery cannot help with pain- despite the fact that I now have 3 progressive curves and am in pain. I understand that surgery is not done for pain alone but I am very scared that at some point it will have to be done and then I will be left with no-one to help me if I have worse pain afterwards.

                      sorry to hijack thread a bit was I was interested in the routine follow ups that you guys have in US and how they compare?

                      Comment


                      • #26
                        Hi Burdle

                        I'm sorry you are struggling to get anywhere with revision in the UK. I'm not sure where you are but I am in the Midlands and have had multiple surgeries at the Spinal Unit at Nottingham's Queen's Medical Centre. They have always listened to me over the years and I have had no problems being referred for CT scans, MRI scans and whatever other diagnostic procedures are required.

                        Is it possible to ask your GP for a referral to another hospital for a second opinion?
                        Juvenile Idiopathic Scoliosis diagnosed aged 6/7
                        Milwaukee brace 1980 - 1984, Fused T2 - L3 with Harrington Rod 1984, 10 rib costoplasty 1999, artificial disc at L3/L4 2003, extended fusion to L5 2006.
                        2015 - Sagittal plane imbalance correction by insertion of 30 degree hyperlordotic cage at L5/S1 level (anterior approach) with fixation to pelvis (posterior approach) now fused T2 to sacrum.
                        2017 - October - SI joint fusion - left side
                        2017 - December - Revision of failed left SI joint fusion

                        Comment


                        • #27
                          Originally posted by Spinals View Post
                          Hi Burdle

                          I'm sorry you are struggling to get anywhere with revision in the UK. I'm not sure where you are but I am in the Midlands and have had multiple surgeries at the Spinal Unit at Nottingham's Queen's Medical Centre. They have always listened to me over the years and I have had no problems being referred for CT scans, MRI scans and whatever other diagnostic procedures are required.

                          Is it possible to ask your GP for a referral to another hospital for a second opinion?
                          Hi,

                          I have not had any surgery. I am merely recounting the many many experiences that are relayed on social media about people who have had surgery ending up being told to 'live with the pain' I am please that you have a good 'pathway' but many many people do not in the UK. There is simply no treatment and lots of people are just ending up at a dead end. It is particularly bad now with all the cuts to services.

                          Comment


                          • #28
                            Originally posted by burdle View Post
                            I have not had any surgery. I am merely recounting the many many experiences that are relayed on social media about people who have had surgery ending up being told to 'live with the pain' I am please that you have a good 'pathway' but many many people do not in the UK. There is simply no treatment and lots of people are just ending up at a dead end. It is particularly bad now with all the cuts to services.
                            Burdle, We have pretty much the same sort of thing going on here in the states.... There have been posts recently about members struggling to have their insurance accepted. Doctors and hospitals want to get paid, and its not cheap, and it requires really good insurance. When I had my surgeries, I had the best insurance I could buy.

                            Now that I am cruising, not needing "immediate" surgery (for my neck) I have the cheap insurance......Why? Because elder males in the US get HAMMERED on medical insurance premiums. Its the stats.... It truly is insane what they want. I could make 2 house payments for what they want. I take the balance of the insurance savings money, and invest it. This will finance a gold plan a few years down the road should I need my neck fused.

                            If you need scoliosis surgery here in the states, you have to "time your insurance policies". If you are 30, and you can wait, you don't really need to buy a gold plan. If you think you are going to make a surgical decision within a year, it would be prudent to upgrade your insurance before surgery.

                            Young scoli's in the states that are surgical candidates need to plan way ahead.....DECADES AHEAD At least have an IRA, and if they can wait, possibly do a HSA to save for years leading into surgery. Health Savings Accounts offer many advantages....This stuff is really important!

                            I am thinking about starting a ROTH IRA for my goddaughters child. She is 6 weeks old.

                            I think I am waiting too long.

                            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
                              Well this afternoon I received a call from my Surgeon's office. They now have a date for me.
                              Feb. 22 (that's only 3 weeks from today) yikes!
                              Very exited and nervous at the same time. But happy to get it over with and get on with my life
                              I am allowed to do my pre-op at my Doctor's here so will not have to make an extra trip to Toronto.
                              Thank you all for helping me through this waiting time.
                              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


                              • #30
                                Good news! Marianne

                                Its been a long wait....I don't know what to say other than that your not the only one.

                                And with all the waiting, pain, and melancholy, it reminds me of a few cat videos that are just brilliant......

                                Some entertainment....

                                Henry 3, Le Vet
                                https://www.youtube.com/watch?v=IiYUzYozsAQ


                                Henry 2, Paw de Deux
                                https://www.youtube.com/watch?v=Q34z5dCmC4M



                                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

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