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Oh here goes- a personal vent of sorts, and a wishful "surgery date"

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  • #16
    Very well said, Susan & Ed!! It helps so much to read about your experiences & thought processes. Thank you for taking the time to share.
    Friends & family frequently ask when I'll be having my surgery. My husband needs to be fully recovered & I'm not 100% sure on who my surgeon will be. I do have the month picked out: October! Other key components of being ready are: having a garage sale, organizing our house, moving my mom & a vacation! Goodness, I'd better sign off & get busy!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

    Comment


    • #17
      Originally posted by scooter950 View Post
      PS - Sharon, i think i understand what you mean by cutting losses: it will be a new "normal" for me, I will deal with the post-op limited mobilty, I am trying to do that now- avoid bending, etc. but tiEd, i am also seeing this as a positive: I want to be better, I want to WALK! I want to travel- my husband wants to take me to europe, to disneyworld, he wants to go to the resort in the Bahamas - but I keep saying no, not now- I recognize my limitations, and I don't want a vacation where I must take narcotics in order to do anything. I feel my husband got a bum deal when he married me, the back pain has worsened with age. he deserves better. so I will get stronger, I will try to walk - yes, I am fghting depression but I will stay on the meds, I try to laugh ( reruns of Everyone Loves Raymonds always make me laugh!!) and I try to get out of the house, when possible. so depression may affect recovery- but I was depressed with my C spine surgery too- and I wasn't on antidepressents then yet I healed-- I am fused! the pain was tolerable, and now- I will work to prepare for the big surgery.

      bottome line: I just recognized th years are flying past, and I am no closer to getting this done. and I need to stabilize my scoli- so - <deep breath> let's do it! I hope & pray the depression will not be a factor; I'm taking meds and I'm trying to fight it. thanks for listening,
      When we marry, it is unconditional. We do not say that we will stay married as long as our partners stay, fit, or thin, or youthful, or without pain, or without medical problems, whatever. If you marry for love, then the love is unconditional. There are no guarantees once you are at the alter. Some day, your husband may have severe physical or mental problems. You will stick by him and "make it work". Your husband did not get a bum deal marrying you. That is negative thinking.

      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


      • #18
        Discogram, anyone?? don't recall anyone discussing this.....

        @Susan - oh, thank you, but I am acutely aware of my limitations .... I appreciate your encouraging words. My husband's a really great guy - which is why I wish I could do more for him.

        BUT .... I saw my surgeon today, I feel so relaxed and ready to move forward. He wants to do a discogram- UGH! Has anyone had a discogram? I believe they try to elicit the pain, so that the surgeon will be more knowledgable about what levels are causing pain. I told him: I really do NOT want any test that will deliberately cause me pain. but I also told him- if he needs this- OK. I want to have the best outcome... he wants another MRI, more Xrays, bone density, and PT for cardio and hamstring exercises/ leg strengthening. he may not be able to do Oct 13 but we will schedule it for Oct. once all the preliminary tests are completed.

        My curves have not progressed. so in reality- my curves have not worsened in 30 years. But the pain has worsened, my activity level has dropped significantly, slowly over the years, but I am sedentary. He would like to stop at L4 if possible, but he feels the discogram will give him better insight into my pain.

        sounds like the 70's ... disco! disco duck... on that note- good night! Jamie outside of Austin! 4 hr drive home zzzzzzz
        57 years old.
        thoracic curve 68 degrees
        lumbar-sacral curve +/- 41 degrees
        Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
        Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
        THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

        Comment


        • #19
          discogram

          Hi Jamie,

          I got a second opinion from a surgeon who wanted to do a discogram on me. He tried to sugar-coat it, but the more I learned about it the less I liked the sound of it. Apparently it can be and frequently is excruciating, especially if your discs are bad. I posted about it at the time (several years ago) and Linda said it is rarely used at all anymore especially by scoli surgeons. I ended up not going with that surgeon and I am glad for several reasons.

          I also wonder about your comment that the surgeon is trying to stop at L4-----It seems that leaving one disc unfused below a long fusion is almost never a good idea. Some folks here have tried it recently and as I recall two have had to go back for fusion extensions due to unrelenting pain. I would be very concerned about that, and would want to know what odds your surgeon gives you that you will not need a second surgery for extension to the sacrum/pelvis. I am not sure how much mobility saving one level would give you, especially if there is already degeneration at that lowest level.

          Have you considered a second opinion from another top scoliosis surgeon? I know you are ready to get this over with, but you can never be too careful picking the right surgeon and the right surgery for your situation.
          Last edited by leahdragonfly; 04-26-2014, 09:41 AM.
          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


          • #20
            another post about discograms

            Hi Jamie,

            Here is a prior post from Linda about disco grams:


            There's some very new research that casts a negative light on discography:

            http://www.orthosupersite.com/view.asp?rID=40067

            Discography may quicken disc degeneration

            By Robert Trace
            1st on the web (May 20, 2009)
            MIAMI — Results of a 10-year, prospective study suggest that discography can result in accelerated disc degeneration and herniation.

            In the multicenter study, 75 patients without serious low back pain received an MRI and discography examinations in 1997. A matched group was enrolled at the same time and underwent the same MRI examination.

            Discs that had been exposed to discography demonstrated signs of greater degeneration at 10-year follow-up than discs that were not exposed to the procedure, Eugene J. Carragee, MD, of Stanford University, said at the 36th Annual Meeting of the International Society for the Study of the Lumbar Spine (ISSLS), here.

            “We also saw a greater loss of disc height and signal intensity in the group of patients who had discography compared to the control group,” he said.

            In qualitative MRI findings, Carragee and his colleagues documented new cases of disc herniation, new endplate changes and progression of disc degeneration more frequently in the patients who were exposed to disc injection.

            “Disc puncture, even with modern discographic techniques, causes definitive structural injury to IV discs,” he said.

            The findings confirm the results of earlier animal and organ culture studies, Carragee noted. As such, orthopedic spine surgeons need to carefully consider the risk and benefit of disc puncture for diagnostic or therapeutic interventions.

            The investigation did have a few limitations, according to Carragee, including the fact that study subjects were predisposed to disc degeneration, and the effect may not be the same in everyone. Also, “The rate of degenerative changes is unclear, since we only used two time points in the study. Finally, the results were not homogeneous among the groups. Some discs showed no progression at all,” he said.

            Carragee and his colleagues earned the Best Clinical Paper Award for their presentation at the ISSLS meeting.

            Reference:

            Carragee E, Don A, Hurwitz E, et al. Does discography cause accelerated progression of degeneration changes in the lumbar disc: A ten-year cohort-controlled study. Paper # 57. Presented at the 36th Annual Meeting of the International Society of the Study of the Lumbar Spine. May 4-8, 2009. Miami.
            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


            • #21
              Originally posted by leahdragonfly View Post
              Hi Jamie,

              I got a second opinion from a surgeon who wanted to do a discogram on me. He tried to sugar-coat it, but the more I learned about it the less I liked the sound of it. Apparently it can be and frequently is excruciating, especially if your discs are bad. I posted about it at the time (several years ago) and Linda said it is rarely used at all anymore especially by scoli surgeons. I ended up not going with that surgeon and I am glad for several reasons.

              I also wonder about your comment that the surgeon is trying to stop at L4-----It seems that leaving one disc unfused below a long fusion is almost never a good idea. Some folks here have tried it recently and as I recall two have had to go back for fusion extensions due to unrelenting pain. I would be very concerned about that, and would want to know what odds your surgeon gives you that you will not need a second surgery for extension to the sacrum/pelvis. I am not sure how much mobility saving one level would give you, especially if there is already degeneration at that lowest level.

              Have you considered a second opinion from another top scoliosis surgeon? I know you are ready to get this over with, but you can never be too careful picking the right surgeon and the right surgery for your situation.
              I agree with Gail....now I don’t have to type my post.(smiley face)
              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
                I have nothing to say about discograms... but did want to say that I am fused T2-L4 and have not had any problems with that. At my last appt. a year ago (?) all looked well with the lower vertebrae. My surgeon had given me the odds of 80% not needing further surgery, no promises made, entirely my decision. He did think the added flexibility was a plus, but I do need to be careful not to do repetitive type movements that would cause stress there. I will hit my 7th post-op anniversary May 4th.
                71 and plugging along... but having some problems
                2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                Corrected to 15°
                CMT (type 2) DX in 2014, progressing
                10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                Comment


                • #23
                  Glad I happened on here today so I can respond to the discogram. I originally was going to have surgery at Baylor Univ. in TX. I was so taken with the doctor and just ready to go. He wanted myleogram and discogram over the next couple days and surgery was about 3 months out. (I chickened out got a different doctor--Dr. Lenke in St. Louis and had it about 8 months later.) At any rate I went ahead with the tests. Myleogram was OK. I have a pretty high pain tolerance (I think most of us scolis do) but the discogram wasn't much fun. But mainly I felt it caused me an increase of pain and a quicker progression of curves over the next several months. Dr. Lenke said they do NOT do them anymore. I totally agree with the study Linda had cited. Good luck with your decisions. Be sure your surgeon is one who is a specialist in adult scoliosis. Janet
                  Janet

                  61 years old--57 for surgery

                  Diagnosed in 1965 at age of 13--no brace
                  Thoracic Curve: 96 degrees to 35 degrees
                  Lumbar Curve: 63 degrees to 5 degrees
                  Surgery with Dr. Lenke in St. Louis--March 30, 2009
                  T-2 to Pelvis, and hopefully all posterior procedure.

                  All was posterior along with 2 cages and 6 osteotomies.

                  Comment


                  • #24
                    Couldn't agree more. Choice of surgeon, in my opinion, is the #1 predictor of the outcome of your surgery. Sounds like a couple of unticked boxes here, and you have the time to get another opinion before surgery date. Wishing you the very best of luck.
                    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


                    • #25
                      Talking from personal experience, your choice of surgeon is the most important decision you can make. My first surgeon in NC messed me up big time. I thank God every day for Dr Bederman who fixed the most that he could fix
                      Melissa

                      Fused from C2 - sacrum 7/2011

                      April 21, 2020- another broken rod surgery

                      Comment


                      • #26
                        Clarification of Doctor's discussion

                        hello to all, and thank you for sharing your concerns.

                        I wanted to write in more detail and explain the doctor's conversation- when I last posted, it was late at night and Iw as very tired, so I just shared "my" highlights. here is what the doctor told me:

                        first- of course, I told him I was ready to plan my surgery/ he took Xrays, then he asked where my pain was located. Most pain is at the apex of the lumbar curve, but I also have lumbar-sacral pain when I sit too long ( or slouch). So this gave him pause- next, we looked at the Xrays and my curve has not progressed. Still 65 degrees thoracis and approx 40 +/- degrees lumbar ( he did not measure it out right then, we were talking). But he brought up the 2011 Xray and the two spines appeared very close to identical. So then I asked- I was concerned because although it's great that my curve has not worsened- wouldn't that make it more difficult for him to straighten it? I asked if my nerves are already used to this curvature- I have had the same degree more or less since 1985. So I am thinking this is a pretty stiff curve, not easily corrected.

                        IN response to my questioning, he discussed a recent surgical case of an older patient with a 90 degree curve, and he said it was a stiff spine- so then he discussed getting the myelogram and discogram- because he wanted ot understand why my pain is both at the apex and the midline L-S areas. He said the myelogram will be his roadmap for the surgery- and the discogram may explain my pain; he explained he reasoning to me- he said he also wants MRI's and that the tests will determine whether or not he is able to stop at the L4 level. He would like to preserve the L4-L5 and so would I, but he did tell me it may not be possible, this was only our first pre-op meeting.

                        The plan: I must have another bone density test, another MRI, the myelogram, the discogram, and possibly another cardiac stress test- and then we would meet again to review and decide what would really be fused.

                        so I wrote my Reader's Digest condensed version due to fatigue. I was really worn out from driving 4 hrs. it took a toll on me, I cannot imagine going anywhere else for surgery. Of course, hearing so many great things about Dr Lenke- I considered St Louis, BUT... I cannot tolerate the travel. I have other issues besides scoli, and this causes me significant pain, I was worn out from the Fri/ Sat travelling I cannot imagine trying to coordinate surgery out of state. Look how long it has taken me to get to this point!

                        As for getting a second opinion: I did go to two other scoli surgeons before choosing Dr Geck- but from the first moment i started talking with Dr Geck, back in 2011- i was calm and at peace. I remember it - I just trusted this surgeon. Heck, I let him cut my throat! ( sounds weird- but in reality- that's what he did! and the C spine is more risky than the rest of the spine!) When I asked him about my neck pain, and he reviewed the MRI and he did the C spine surgery first- he said it's better to correct the C spine so that when he manipulates the spine during scoli surgery, there's more room in the cervical area. (not exact wording - my memory).

                        Dr Geck IS a scoli specialist. He is travelling this Oct to do mission medical work, he will be out of the country so the date of my surgery will be after his return. I am at peace with my choice of surgeons. and the distance is stretching my physical reserves to the Nth degree! But I will ask him / his nurse about the long term effects of discogram on disc degeneration, and ask if I may refuse the discogram. I hope this detailed post explains the meeting and surgical plans a little better. Thanks to all- very much and sincerely- for reading and sharign advice from your personal experiences! I value your insights! Jamie back home now !
                        Last edited by scooter950; 04-29-2014, 11:38 AM.
                        57 years old.
                        thoracic curve 68 degrees
                        lumbar-sacral curve +/- 41 degrees
                        Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                        Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                        THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                        Comment

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