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  • Tomorrow Scojo will just be Jo

    Hello fellow forum participants,

    Tomorrow starts my journey to a life with less pain. I will be having a first time scoliosis correction surgery. The anterior portion of the surgery will be tomorrow at UCI with Dr. Bederman. It will be the XLIF method followed by a second surgery for the posterior portion on Tuesday, April 1st. No this is not an April fools day joke!

    My fusion will be from the sacrum with pelvic fixation to T4. I am hoping to correct my Lumber curve of 66* and my Thoracic cure of 55* along with my kyphosis (I don't know the degree, but I lean forward a bit). For those who are interested in the clinical side, I found X-rays from 2004 where my curves were both approximately 24*. I am currently 55 years of age, so this large progression has occurred between age 44 and 55.

    Many of you helped me to come to the decision to have surgery through your posts and your willingness to speak with directly. In particular, Susan and Melissa personally shared details of their journey.

    While I am in the hospital / rehabilitation center, my dear friend SueAnn will be keeping all of you up to date on my progress. Of course, I am a bit nervous, but really at peace with my decision and ready to be on the other side.

    Thank you again for all of the great and informative information. I look forward to posting myself in the near future!

    Scojo soon to be just Jo

  • #2
    Hi Soon-to-be-just-Jo. :-)

    I wanted to wish you luck tomorrow and the next day.

    I also wanted to point out that at twin 24* curves at age 45 and now L66* and T55* ten years later you would seem to qualify as a collapse case. That's over 4 degrees a year on your lumbar (starting from 24*!!!) which blows the 1-2 degree per year average progression for curves over 50* completely out of the water.

    Also, <30* at skeletal maturity is generally considered to be protective against progression to surgical range. You blew that out of the water by a mile. I think more study is needed on what, if anything, is generally protective against progression to surgical range. I am skeptical there is enough data on this. This will have a huge impact on decisions about conservative treatments for kids.

    Anyway, again good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

    Comment


    • #3
      Wishing you the very best, soon-to-be-Jo! It's incredibly exciting to be on your last day of scoliosis pain. Yes, you have the recovery to go through, but each week, it'll be easier and easier until you reach your goal. Thanks in advance goes to your friend who'll update the forum. "See" you on the other side!

      Oh, and I should say, you sound "ready!"
      Surgery March 3, 2009 at almost 58, now 63.
      Dr. Askin, Brisbane, Australia
      T4-Pelvis, Posterior only
      Osteotomies and Laminectomies
      Was 68 degrees, now 22 and pain free

      Comment


      • #4
        Originally posted by Pooka1 View Post
        Hi Soon-to-be-just-Jo. :-)

        I wanted to wish you luck tomorrow and the next day.

        I also wanted to point out that at twin 24* curves at age 45 and now L66* and T55* ten years later you would seem to qualify as a collapse case. That's over 4 degrees a year on your lumbar (starting from 24*!!!) which blows the 1-2 degree per year average progression for curves over 50* completely out of the water.

        Also, <30* at skeletal maturity is generally considered to be protective against progression to surgical range. You blew that out of the water by a mile. I think more study is needed on what, if anything, is generally protective against progression to surgical range. I am skeptical there is enough data on this. This will have a huge impact on decisions about conservative treatments for kids.

        Anyway, again good luck.
        Hi Sharon...

        Just a friendly reminder that we can't draw any inference from one case. We frequently see patients at UCSF with large curves that don't progress at all over the years. I don't know whether it's genetics or environment, or something else, but some people progress no matter what. That should never give the medical community license to treat small curves, as that's just not a sustainable model.

        --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
          Originally posted by LindaRacine View Post
          Hi Sharon...

          Just a friendly reminder that we can't draw any inference from one case.
          That what you warn me about on all these "one-off" cases. ;-)

          These testimonials are by no means an accurate cross-section. But them seem to be a touch too frequent to think anyone should hang their hat on the present paradigm about <30* being protective against needing surgery for progression.


          We frequently see patients at UCSF with large curves that don't progress at all over the years. I don't know whether it's genetics or environment, or something else, but some people progress no matter what. That should never give the medical community license to treat small curves, as that's just not a sustainable model.

          --Linda
          Yes we have several testimonials about that also. My general comment is maybe paradigms are not appropriate in scoliosis because it is just too variable.

          Just curious which is more prevalent in what you have seen... large curves that don't progress or small curves that collapse?
          Last edited by Pooka1; 03-30-2014, 08:35 PM.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #6
            Well, twisted sister, you are almost there....at the turning point for the remainder of your life! Remember, your surgeon no doubt has spent hours preparing for YOUR surgery as he figured out exactly how he will repair your twisted back and damaged vertebrae and what hardware he needs to use.

            You have done your due diligence in interviewing surgeons and reading tons on Internet scoliosis related information. The search part is over, now just "git-er-done"!

            All you need is to show up bucknaked, having brushed your teeth and gargled, with a smile on your face with your insurance card in your hand. Sounds pretty easy, huh! Just shut your eyes, take a deep breath and have trust and confidence in your highly skilled surgeon.

            On Tuesday afternoon, you join a whole new club, that is those of us on the other side. We are here to support you, sympathize with you, and help you figure out pain management, constipation relief, and the adjustments that you will need to make being fused. Also, we will celebrate your new look and a progressively improving life as you gradually need less pain meds.

            Remember, all you really need is to show up in your birthday suit with your insurance card.

            Sending best wishes to you, you will be awesome!
            Hugs, 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


            • #7
              Tomorrow Scojo will just be Jo

              Hi Jo,

              My name is Diane and I'm a new member to the forum. I am also 55 years old and possibly facing surgery to correct my curves (and not the good ones on the outside!)

              I wish you all the best as you begin your journey to better health, with less pain. You will be in my thoughts tomorrow and the upcoming days.

              Diane

              Comment


              • #8
                Originally posted by Pooka1 View Post
                That what you warn me about on all these "one-off" cases. ;-)

                These testimonials are by no means an accurate cross-section. But them seem to be a touch too frequent to think anyone should hang their hat on the present paradigm about <30* being protective against needing surgery for progression.




                Yes we have several testimonials about that also. My general comment is maybe paradigms are not appropriate in scoliosis because it is just too variable.

                Just curious which is more prevalent in what you have seen... large curves that don't progress or small curves that collapse?
                We see a large number of degenerative scoliosis cases. In the vast majority of those cases, people were unaware of having a curve when they were younger. I honestly don't remember seeing anyone who had progression like Jo, with the exception of the camptocormia cases we see. Most of the people we see who had small to moderate curves when they were younger either don't progress or progress the 1 to 1-1/2 degrees per year.

                --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


                • #9
                  Thank you!

                  Off to bed and a good sleep to prepare for tomorrow! Thanks to all of you! Ism so grateful for this forum and all of you!
                  Attached Files

                  Comment


                  • #10
                    Good luck tomorrow jo
                    Kara
                    25
                    Brace 4-15-05-5-25-06
                    Posterior Spinal Fusion 3-10-10
                    T4-L2
                    Before 50T
                    After 20T

                    Comment


                    • #11
                      Well it's almost tomorrow where you're at. Just chiming in to wish you well and a steady recovery.

                      I had a curve that wasn't usually measured. I asked one time when I was at the doctor at 16 years of age how big the lower curve was. They said it was in the teens. Now, it is 37-380 less than 20 years later. Curves in the teens aren't supposed to progress and become structural. Grrrr. Nothing is normal about me. Maybe when I'm "Jo's" age, I'll be all crunched up. Who knows? I fully expect that the lower curve is going to bypass the upper one. Then they'll say I have a regular right thoracic curve. Isn't that a joke?
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • #12
                        Good luck.

                        Melissa
                        Melissa

                        Fused from C2 - sacrum 7/2011

                        April 21, 2020- another broken rod surgery

                        Comment


                        • #13
                          Originally posted by LindaRacine View Post
                          We see a large number of degenerative scoliosis cases. In the vast majority of those cases, people were unaware of having a curve when they were younger. I honestly don't remember seeing anyone who had progression like Jo, with the exception of the camptocormia cases we see. Most of the people we see who had small to moderate curves when they were younger either don't progress or progress the 1 to 1-1/2 degrees per year.--Linda
                          Linda,

                          not meaning to be argumentative here, but I had documented curves in the mid-20's after I was done with bracing as a young teenager (braced down from 33 thoracic and 34 degrees lumbar). My curves at age 40 were lumbar 30 and thoracic 21. At age 42 my lumbar curve had collapsed to a whopping 47 degrees. Dr Hart was very surprised. And I do not have camptocormia. I know I am just one person also, but I did have a rapid progression after many years of stability at or below 30 degrees.

                          Enough about me--I am sending healing thoughts to Jo as she begins her recovery journey.
                          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


                          • #14
                            Originally posted by leahdragonfly View Post
                            Linda,

                            not meaning to be argumentative here, but I had documented curves in the mid-20's after I was done with bracing as a young teenager (braced down from 33 thoracic and 34 degrees lumbar). My curves at age 40 were lumbar 30 and thoracic 21. At age 42 my lumbar curve had collapsed to a whopping 47 degrees. Dr Hart was very surprised. And I do not have camptocormia. I know I am just one person also, but I did have a rapid progression after many years of stability at or below 30 degrees.

                            Enough about me--I am sending healing thoughts to Jo as she begins her recovery journey.
                            Hi Gayle...

                            I, in no way, meant that it couldn't happen. As I've said many times before, there appears to be at least some people in which progression will happen, regardless of any treatment (with the possible exception of surgery), and in some people, progression will not happen. That's why I tend to cut Sharon slack about her stand on bracing.

                            By the way, let's not hijack Jo's thread. If anyone wants to discuss more on this issue, please post a new thread.

                            --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


                            • #15
                              I don't think this is really hijacking Scojo's thread. Jo mentioned the small curves progressing to large ones. That's how this all got started. I hope the surgery went well.
                              Be happy!
                              We don't know what tomorrow brings,
                              but we are alive today!

                              Comment

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