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  • 6-week post-op doctor visit

    First of all, I want to thank everyone for their responses to my post-op forum posting last month after I got home.

    I had my first post-op visit with Dr. Boachie August 21st and it was a bit of a surprise. I have developed kyphosis below the fusion (T2-T12), and am getting more
    surgery Sept. 21st to fuse L1-L4. I have actually lost height since the surgery (they didn't tell me how much--I wish I'd asked). The kyphosis has developed because
    of my soft bones. I was diagnosed with osteopenia eight years ago and have taken osteoporosis medications (Actonel, Boniva, Atelvia) for over five years.

    The x-rays taken right after surgery looked good. The x-rays done last week looked dramatically different because of the post-distal kyphosis ( I believe that is the
    right term). I think I look more round- shouldered since the surgery, too. I hope that doesn't mean I am getting kyphosis above the fusion, too. I didn't ask about
    that. (I'm always lecturing my mother about how shehas to ask her doctor more questions but I tend to do the same thing.) I am going to have an osteotomy and a
    cage. Is it usual to get a written report on your surgery soon afterwards? I think there was a thread about this topic recently but I can't find it. Also, is it usual to
    get a written report on exactly what is planned for upcoming surgery? I think Melissa said her doctor sent her a detailed report about his plans.

    At the end of the visit, I at least remembered to ask what my correction was. My thoracic curve went from 60 to 26, and the lumbar curve went from 52 to 33 (it's
    unfused). At my pre- op visit Dr. B. said that on my bending x-rays the lumbar curve corrected to 16 degrees. That is why he wanted to take a chance on doing a
    selective fusion and preserving lumbar mobility. He had told me ahead of time I might need the fusion extended--I just wasn't expecting it so soon. By the way,
    Dr. Neuwirth, the first doctor I saw, recommended a fusion from T5-T12. (My pre-op curvature numbers that were formerly in my signature were based on the
    x-rays I had last December with Dr. Neuwirth.) I guess the selective fusion would have worked if it weren't for my Gumby-like bones.

    I have to write an e-mail to Dr. Boachie with all my questions. Do you think it is crazy to ask if I could be fused to the sacrum? I know that would be a very long
    fusion but so many of you fused to the sacrum seem to be doing so well.

    I am very afraid of ending up like my 80-year-old mother, who was told she had very mild scoliosis when she was in college. (It was never measured and wasn't at
    all apparent.) Even though she had osteoporosis, she was very active and pain-free until she was 78. She took a variety of osteoporosis medications for many years, which reduced her diagnosis to osteopenia. From age 78 to 80 she became more and more bent over, and ended up with a spontaneous sacral fracture a year
    ago. The KUMC Spine Center in Kansas City diagnosed her with lumbar scoliosis of 48 degrees, lateral listhesis 3-4, degenerative disc disease of L2345, stenosis,
    and collapse of S-1. She is in constant pain and has trouble walking and sitting up to eat without leaning over to the side. I don't feel the KUMC was very helpful.
    When I went there in 1974 Dr. Marc Asher was my doctor, who was a well-known scoliosis specialist, but I don't know if there is anyone expert there now. She has
    other health problems and would never want to have surgery, and it seems doubtful any doctor would recommend it. She has been on Forteo for a year now.
    Anyway, my point is maybe I would rather get all the fusion done before it is too late for surgery.

    If you are fused to L-4 is it inevitable that eventually you will need to be fused further down?

    Thank you so much. I don't know what I would do without this forum.

    Mary
    Age 54
    Surgery with Dr. Boachie 7/5/11, Fused T2-T12
    Pre-surgery T60, L52
    Post-surgery T26, L33
    Next surgery scheduled 9/21/11
    Last edited by boomergal; 08-23-2011, 04:01 PM. Reason: typo, spacing errors

  • #2
    Hi Mary...

    Yes, I think it may be a bit nuts to ask to be fused to the sacrum. If Dr. Boachie felt you needed that fusion, I'm sure he'd recommend it. If you can avoid fusing the lowest segments, you definitely should. I don't think the fact that a bunch of us who are fused to the sacrum and who have had good outcomes, has anything to do with being fused to the sacrum. There's probably a reasonable likelihood that you'll end up needing fusion to the sacrum, but if you can avoid it for awhile, and potentially avoid it forever, I think it's worth the risk of potentially needing another surgery in the future.

    I think it is common to ask for a copy of the surgical dictation, and it's good to have a copy for your records. You can also ask for a copy of the visit dictation, although I think you may find that there can be significant differences between the visit dictation and the final surgical plan.

    Best of luck with the surgery.

    Regards,
    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


    • #3
      Originally posted by LindaRacine View Post
      There's probably a reasonable likelihood that you'll end up needing fusion to the sacrum, but if you can avoid it for awhile, and potentially avoid it forever, I think it's worth the risk of potentially needing another surgery in the future.
      I couldn't agree more with Linda! At first my surgeon thought because of my rotation, he would need to fuse me to my pelvis...so I went into surgery prepared to be fused all the way down. When I came out of surgery, he was very excited to tell me that he hadn't needed to fuse me that far after all. My spine was so "limber" he was able to get my double major curve down from 52 degrees to less than 15.

      I may need to have the whole shebang at some point...but I trust that he felt it was better to leave those bottom discs free for as long as possible. And, he feels there is a great chance I may never need it at all. Even if I get 20-30 years without it, I'm fine with that.

      You are in great hands, and I would just trust what your surgeon thinks is best at this point.

      Blessings!
      Rebecca
      Age: 28
      Dx w/ scoli @ age 12 S curves T-40* L-42*
      wore night bending brace as teenager
      Curves changed to 50's plus or minus
      herniated disc L2-3, Discectomy October 2007
      fusion L2-3 November 2008
      Revision L2-3 Fusion, Removal of hardware August 2009
      Curves measuring 52 T&L September 2010
      Fused T4-L4, all posterior December 27th 2010
      gained almost two inches in height

      Before and After Exterior
      Before and After X-rays
      My blog: http://herscoliosisjourney.blogspot.com/

      Comment


      • #4
        I am one of those who has had a wonderful outcome with my pelvic fixation. BUT-I still recommend avoiding it if at all possible. As well as I have done, I would be even BETTER if I didn't have it. But it was necessary in my case, so I have no regrets, personally. Your doc is one of the best around-trust him. And ask questions so that you feel comfortable with the decision. Good Luck!
        Jenee'-52
        Bend, Oregon

        Braced 3 years in high school
        Lumbar 70'+ Thoracic 70'+
        I had 3" shrinkage in 6 months...

        Surgery Jan 10, 2011
        9 hours
        T3 to S1 with pelvic fixation
        Both curves now 35'

        Possible revison for Flatback Syndrome
        Non-fusion
        Loose/broken hardware-awaiting CT results

        Here is the link to my before and after pics..
        http://www.scoliosis.org/forum/showt......&highlight=

        Comment


        • #5
          I'm so sorry that you need to have more surgery so soon! But whoever said above, you're in the best hands, so I'd go with whatever he recommends.

          How is your pain level since your surgery? Are you having different pain in the lumbar area now?

          ((Hugs))
          __________________________________________
          Debbe - 50 yrs old

          Milwalkee Brace 1976 - 79
          Told by Dr. my curve would never progress

          Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
          Pre-Surgury Thorasic: 66 degrees
          Pre-Surgery Lumbar: 66 degrees

          Post-Surgery Thorasic: 34 degrees
          Post-Surgery Lumbar: 22 degrees

          Comment


          • #6
            I am sorry that you need to have surgery again so soon but welcome to my club. As you have a very knowledgeable doctor, you need to go with what he says to do.

            Good luck

            Melissa
            Melissa

            Fused from C2 - sacrum 7/2011

            April 21, 2020- another broken rod surgery

            Comment


            • #7
              Mary,
              I am sorry you have to have another surgery, but it sounds like it's necessary. Dr. Boachie has an excellent reputation so you know he will do what he believes is best. Like Jenee', I am fused to the sacrum and doing fine, but I would respect Dr. Boachie's opinion. It wouldn't hurt to ask what he thinks of fusing to the sacrum to avoid a surgery at a later date, but Linda didn't recommend asking.
              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


              • #8
                I am one where we (my surgeon and I) discussed fusing all the way or not to play it safe and my surgeon left the decision up to me. He told me I had about an 80% chance of not needing further surgery, but of course there was that 20% if we stopped at L4, but he thought it would be worth the risk for the added flexibility. I am a little over 4 years post-op and so far, so good. I just had my exam and my new doctor, Christopher DeWald, says L5 and S1 look just fine. (My original surgeon is now working only at Shriner's Children's Hospital...)
                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


                • #9
                  Thanks so much for your responses. I suspected it was sort of a crazy idea to want to be fused to the sacrum, but was curious what people thought about the idea. I do trust Dr. Boachie to do
                  what’s best and I’m eager to get this next stage done with. I probably won’t bother asking about being fused lower.

                  I know I’m getting ahead of myself, but is there anything in particular that a person fused partially in the lumbar area can do (or shouldn’t do) to preserve the remaining lumbar vertebrae
                  (especially someone with weak bones)?

                  Linda: Thanks for your input. I was hoping I’d get your opinion. Rebecca, Debbe and Susie: Thanks for your perspectives, too, as people fused partially in the lumbar area. Jenee and Karen: Your recoveries from fusion to the sacrum are really something, and fun to read about. Melissa: I think your strength and stamina are amazing. You have been through so much but I’m sure things
                  will be getting better and better for you.

                  Debbe, you asked about my pain level. The fused upper part of my back isn’t causing me any problems but three weeks ago I started getting more and more pain in the lower unfused part of my back. Also, I can feel the bottom end of the rod sticking out more and more, which makes it hard to lie on my back or sit in a chair or car seat. I hope this will not get progressively worse and more painful in the next few weeks. This is a new concern for me. I’ve been holding up well emotionally but had my first little meltdown two days ago.

                  P.S. I wrote my last post on an iPad and I thought it came out all right when copied and pasted to the forum site but it still looks like some sort of weird haiku on the iPad. Hope this one is better in terms of spacing.

                  Mary, Age 54
                  Surgery with Dr. Boachie 7/5/11, Fused T2-T12
                  Pre-surgery T60, L52
                  Post-surgery T26, L33
                  Next surgery scheduled 9/21/11

                  Comment


                  • #10
                    Mary

                    I’m so sorry about this. Its hard to believe that this happened so quickly.

                    Many surgeons spare levels under constructs. This seems to be the norm unless there is any doubt with the integrity of the lowest levels. Since the lowest levels articulate approx 20 degrees, each level is valuable.

                    The fact that you do have an osteoporosis issue, and many of us fused all the way down are doing well, I can understand why you ask your question....

                    The one thing about Dr Boachie is that his hands on experience, # of scoliosis surgeries has to be one of the highest and it makes it difficult to question his decision. I guess its your right to ask him once to see what his response is....I had no doubt on my lower levels since my spine was pretty shot, but I tried to get my surgeon to fuse a little lower up high (T4) and his answer was no. There was really no discussion since I do have some neck issues with some degeneration. I think about it often, and I guess I’m prepared just in case my neck has to be done. Anyway, sometimes we have to roll with the punches, but we always get up...

                    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
                      Ed, Thanks so much for your words of encouragement. You are another of those fused-to-the-sacrum people who do amazingly well. Maybe in my somewhat oxycodone-addled mind I thought I
                      could turn into a skiing, scuba-diving, golfing, roller-skating dynamo if I were fused to the sacrum. (I am not a very athletic person although I do love badminton and really miss going to the
                      gym.) Actually, I just want to avoid another surgery, if possible. I hope your neck problems stay stable or improve.

                      P.S. Just saw your YouTube skiing video. That is really impressive (and scary -- all those trees!)

                      Mary, Age, 54
                      Surgery, Dr. Boachie 7/5/11 fused T2-T12
                      Pre-surgery T60, L52
                      Post-surgery T26, L33
                      Next surgery scheduled 9/21/11

                      Comment

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