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  • #16
    Hi Susan...

    I know that you didn't address your question to me, but I thought I'd respond anyway. (No one ever accused me of having too few opinions. ;-)

    I've run a scoliosis support group in the San Francisco bay area for several years, and have been active on the internet for almost as many. While I certainly have heard of bad outcomes, I can tell you that the vast majority of people I know who have had surgery are either immediately happy with their results, or will be by the time they're a year post-op.

    Scoliosis surgery is definitely not a piece of cake, and should never be emarked upon without very serious consideration. In the end, it still has to come down to you. When you can't stand the pain and loss of function, you'll know it's the right time. If you know for certain that you'll eventually have to have surgery, my only recommendation is to do it sooner rather than later, and when the timing is right in terms of availability of caretakers, insurance. etc.

    If you want to read my own story (similar to yours), you can do so at:

    http://www.scoliosislinks.com/AboutMe.htm

    Good luck with your decision.

    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

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    • #17
      when to have surgery

      Dear Susan:
      I'm sorry, but I really have no idea when surgery is a good option and when it's not. I'm nervously awaiting my appointment because I have no idea whether I should have it or not. Your curves sound very similar to mine. Like you, I've lost about 2.5 inches (5'3-1/2, used to be 5'6), and the doctor will probably say I don't need it right away. My pain is like yours. It's tolerable and not severe. But because of my age and financial reasons (lack of insurance and disability leave in the future), I don't know whether to go ahead for that reason. Friends say not to do it for financial reasons; but if I need it some day for sure, why not do it now when I can afford it. I'll let you know how my appt goes. I was glad to see the moderator's post. It made me feel like I'm not crazy to feel like the timing might be right despite advice I'm getting. I'll see what Dr. Lieberman thinks.

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      • #18
        Dear Linda,
        Thanks for your reply. Your words were an encouragement to me. I feel that this is the year I'm ready to go through surgery. I need to hear about the success stories. I feel that my pain is directly related to my curvature and that in correcting the curve I should get much relief. Of course, my surgeon says he can't guarantee it. He just wants to be sure that I'm at a point to go through such a big surgery. On the good, painless days that's when I get second thoughts! I guess everyone goes through the same thing. I would love to hear from anyone about their surgical experience and how they felt right after and a year or more down the road.
        You will probably see more of my entries over the next several months. I have a long list of questions next time I visit with Dr. Roberto at UC Davis. I am having the MRI's done next week and I see Dr. Roberto Feb. 25th. I have faxed my medical records over to UCSF (Dr. Bradford) and am awaiting a reply to set up a second opinion with him. I will be prepared to have surgery near the end of June.
        I enjoyed reading your story.
        Sincerely,
        Susan

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        • #19
          Hi Susan...

          If you end up coming to UCSF to see Dr. Bradford or one of his associates, and can't bring someone along to help you listen, I'd be happy to do that.

          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


          • #20
            surgical first-time

            I had a revision A/P 15 months ago for an 80 degree curve which caused breathing problems (lost 30% lung volume and lost lung tissue). I am 61.

            I was able to control pain by exercise and some Aleve but the breathing part and the progression scared me. My original surgery was in 1956 at age 14 for a 100 degree curve. My "solid" fusion weakened and was all the way back up to 80 deg.

            The prospect for surgery is certainlly scary and is a very personal decision. In my case I was glad I did. I am back to work and basically comfortable most of the time. My revision was from T-4 to sacrum. I also had the thoracoplasty (hump reduction).

            My point is, although this was not the first time, a good result is possible even in complex cases like mine.

            Karen
            Last edited by Karen Ocker; 02-06-2004, 05:23 PM.
            Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
            Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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            • #21
              Thanks for sharing your story with me. It's nice to hear you got such good results and that you are feeling so much better. I don't have any lung problems yet. My main discomfort is in the lumbar area and my neck. From what I'm hearing it sounds like most people who undergo surgery are glad they did it. That helps me make a decision.

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              • #22
                Surgery Date

                I just wanted to share with the other patients of Dr. Lieberman that I saw him on 2/16 and we set a date of May 18th for my surgery. We took many factors into consideration. I was especially concerned about the fact that I already have osteopenia in my spine (osteopenia precedes osteoporosis), which will continue to get worse, so surgical results would be better now. I was also pleasantly surprised that he only wants to fuse my lumbar curve, which is 58 degrees. Though my thoracic curve is 65, his nurse said the thoracic would naturally straighten. I hadn’t heard that before, but I'll take their word for it. I asked if this would alleviate the necessity of detaching my diaphragm and taking out a rib, etc., that goes along with anteriorly correcting the thoracic curve and was told it probably wouldn’t be necessary to do that. So the surgery doesn’t sound as serious as the anterior and posterior one my prior doctor recommended at some point in the future. The lumbar curve is progressing rapidly (16 degrees in the past 2 years), though my thoracic was nearly as bad (13 degrees in 2 years), but from what I hear the lumbar curve would be the cause of a lot more pain later in life. So I wanted to go ahead with the surgery, since it’s a good time for us (I have a disability leave at work and I have good insurance). It will just be an anterior spinal fusion.

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