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  • Finally Having Surgery

    OK, so I'm sure I'll get a lot of flack about choosing to have surgery, but I decided to post anyways about it. I went and saw Dr. Lawrence Lenke last week for the first time and he was AMAZING. I found out a lot that I am surprised no one else picked up on.
    I've known I have scoliosis, but apparantly too I have kyphosis, 65 degrees. He told me that usually people with scoliosis have a relatively low kyphotic curve because of the scoliosis, but apparantly I don't. My scoliosis is 45 degrees, so not terrible but it is really painful. Lenke told me that possibly the pain could be coming from that fact that the amount that I am rotated is consistant with a 65 degree scoliosis curve (18 degrees) and so looking at me he thought that I have a larger curve than I really do. My curves have been consistantly been getting worse anywhere from 2-5 degrees a year. They were only 25T, 23L when I was diagnosed, and I was done growing at that point.
    The other thing that was interesting that was found was that I am missing a vertebrae! He didn't seem to think it was a big deal but was rather surprised that no one else had picked this up after being followed for six years worth of x-rays.
    Anyways, I am having surgery on June 20th, 2008 at Barnes Jewish hospital in St. Louis and will be fused somewhere around T5-L1. sometimes I feel stupid telling some of you about this who have 90 degree curves and are just living with it, but I can't live with it. I finally feel pretty comfortable with my decision and am ready to face this head on and hopefully have a good result.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  • #2
    I'm not sure why you would be getting flack for choosing this surgery. It seems as though you have made an informed decision and that is incredibly important. It is also good that you have this much time to prepare for it. I HIGHLY suggest strengthening the leg muscles. It really helped me out post-op and trust me, you'll be using them. Keep positive and good luck. We are all here to help.

    Best,
    Anya
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

    Comment


    • #3
      Good for you!

      It's uncanny. Reading your story, I'm hearing a lot of my own. When I was 19, an ER doctor discovered my scoliosis on an x-ray while looking for an ulcer. I had a 40-something degree curvature, so I saw all the appropraite docs, but none of them seemed to think it was very significant. I too had kyphosis that no one remarked upon. Needless to say, I never thought of surgery as an option let alone a real possibility. BOY DO I WISH I HAD.

      I'm gearing up for surgery 2 weeks from now. My lower back pain had been getting progressively worse for years, but I thought it was normal aches and pains stuff. Since the doctors told me my scoliosis wasn't significant, I never thought much about it--I certainly didn't connect it to my back pain. I ate lots of Advil and sat on my heating pad whenever I could and went about my business. It wasn't until I began losing felling in my left leg that I went to a chiropractor for some help (that was only after neurologist gave me brain scans to make sure I didn't have MS--jeez louise--did you not notice that enormous hump on my back?). Thank the lord she knew of an amazing spinal surgeon in town that she thought might help.

      I know this is going on a bit, but I'm coming to the important part. I got all the right films and waited a month to get into see uber-surgeon. He walks in, introduces himself, looks at the light board and said something to the effect of, "We can mostly fix that. Wish I could have gotten you when you were 19. I could have totally corrected it, but we can work with this."

      There are some important parallels in our situation that compel me to drive home the fruits of my experience (horribly, horribly mixed metaphor):
      1--you've been underestimating the seriousness of your scoliosis because it isn't as dramatic a number as others have---don't!
      2--you've been in school. This circumstance will facilitate your denial. Because of the flexibility of my grad school life, I could instantly address whatever discomfort I was feeling--go home to read rather than stay at the library, for example. Because of that I was not aware how much the pain was increasing. It snuck up on me.
      3--You've heard this already, but it's really true: do it now because it is easier to heal the younger you are!

      and

      4--Don't feel like you need to justify yourself to anyone. If you feel that surgery is right for you right now, then it is.

      GO for it.

      Holly
      Age 33
      40 degree diagnosed 1993; 70ish degree 2007
      Fusion to T9 to L5 October 3, 2007 with Dr. Kurt Von Rueden
      Corrected to 8 degrees

      Comment


      • #4
        denial, denial and more denial

        I am 62.5 years young, so I've lived with denial for 50 years. At age 13, mother told me "stand up straight like a model" and never took me to an MD. Later, on my own, every medical professional I ever dealt with told me one of the following: they did not know of any treatment; there was nothing that could be done at my age (whatever it was at the time) about the hump on my back: "should have had it taken care of when I was adolescent;" I could stabilize my spine and possibly reverse the curve if I worked out and strengthened the core muscles. Thanks a lot, all of you! formerly now

        However, I also was in denial about the extent of the disability and the pain I sometimes experienced. I hadn't realized that having a very limited range of motion of the right side of my head (kypho hump also on right side) was not normal - I only realized how limited it was when treated following being rear-ended. I also didn't know that having sciatica starting at age 25 (when I was trim and slender) was not normal. Just as living in an emotionally dysfunctional envirnment, you don't know what "normal" is if you've had the physical dysfunction most of your life - as Shegiles said, circumstances facilitate denial.

        Dr. Boachie told me that my correction may not get me into the range of normal, as my spine is fairly rigid. I also expect a long recovery period.

        My point is that if you are ready now and have a great surgeon, go for it.
        As of 12/25/07, age 62, 100* thoracic kyphosis, 73* L1-S1 lordosis, 37*/25* compensatory S-curve scoliosis. On 12/26/07, Dr. Boachie @ HSS NYC did 11 hours ant. & post. procedures, fused T2-L2, kyphosis now 57*, scoli 10*. Regained 2 1/4 inches in height!! Improving every day.

        Comment


        • #5
          Hi Amae,

          I'm sorry if you've gotten flack or expect it from anyone. This is a pretty personal thing. I've heard great things about Dr. Lenke, so I would think if he is recommending surgery, that it isn't for others to judge.

          I know what you mean about feeling like your curve doesn't put you in the "big leagues" of scoliosis; I also felt bad when complaining about pain from my curve that was almost half the size of others' on here! But hey, it's all relative.

          I personally never had my curve measured until 8 months ago, when my compensatory lumbar curve started giving me such pain that I went to doctors about it. When it was measured at 52', I couldn't believe that I was immediately in the "severe scoliosis" category. So I wonder what it was at your age, and know that it progressed during that time, because I shrunk 2" since high school.

          I think if Dr. Lenke is recommending surgery, you have documented progression, and you have pain, now would be the time to do this rather than later. Like Janet, I let myself live in denial about this, for atleast a decade. Once I started to face it though, it was like "let's get on with it already!" All I had to do was imagine myself at age 60, knowing this was only going to get worse. I am so pleased with the outcome, and really proud for having finally faced it. There was discouragement from some people I knew, questioning having such a major surgery, questioning why I didn't just go to a chiropractor(!), etc. Don't let those types of comments dissuade you if you feel like what you are doing is right!
          31 year old female
          55* (day of surgery) thoracic curve w/compensatory lumbar
          T4-T12 on Aug 15, 2007

          MRI, pre-surgery
          Xray, 3 mos. post-op
          Machu Picchu, 8 mos. post-op

          Comment


          • #6
            Thank you all so much. You seriously don't know how much better you just made me feel. I am definitely releived that I am finally doing something about this. I just feel like it's not going to get any better, and it's not the way it's looking now. It's just one of those things, when you are diagnosed, you are like, woah, i don't feel like I have scoliosis (obviously some people do),then you find out it's 45* and have pain and feel crappy all the time, are missing parts, have 65* kyphosis, but still see others out there that are much worse off. It's hard to put yourself into that category, and I still don't. But I feel good about my decision and now I have 9 monthes to think about it. 9 months! I could have a child by June 20th! haha. Just kidding, I'm too young for that....
            But Holly you're totally right about the adjustment thing. I only have to sit in class for an average of 3 hours a day (except when I have my 5-hour Organic chem lab on top of that). I felt much worse in high school. But I am going to med school (not just thinking about it, I am bound and determined), and being on my feet all day would destroy me! Right now I can just lay in bed or on the couch and study... betcha I won't be doin that for the rest of my life!
            aBbiE
            22 yr old F,KU college student
            Kyphoscoliosis...
            Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
            Kyphosis of 65 degrees...
            I am missing a lumbar vertebrae

            Surgery 6/30/2008 with Dr. Lawrence Lenke
            Fused T2-L2


            before/after pics
            all smiles!

            Comment


            • #7
              Hello amae28-

              Now you can move forward. The decision to have the surgery is the hardest part. I think we scolies are champions at playing games with ourselves and second-guessing everything we did or did not do right to develop our problems. Keep up the good work and i look at Dr. Lenke's website quite a bit because I find his case studies very interesting. You will do great! Lisa
              Lisa age 47
              T curve 69 degrees
              L curve 40 degrees more or less - compensatory
              fused to from T-3 to sacrum
              anterior and posterior surgeries completed June 1, 2007
              pushing hard in recovery !!

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