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revision of a recent long revision

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  • revision of a recent long revision

    I need revision of the revision surgery I had 1.5 years ago. My revision surgeon was good, but my entire revision has failed. I need a very drastic revision to fix this.
    I am in very severe pain. My posture is really horrible, and I can't walk. The screws are very painful (I can't just get them removed as I need my entire revision re-done due to very very poor posture). I have nerve damage to my abdominal muscles-they flop foward in atrophy. I am now taking strong medication, and I hate it. I am fused now from neck to tail bone (T2 to S1). I can't function. I am in very serious pain. I am sick from medication. I have 4 anterior cages, 14 pedical screws, two long rods. The surgery to fix this is very complex. I am not living well the way things are.
    Is anyone else in a similar position, or have you been down the complex revision of a complex revision path already?
    Please only respond if you have experienced this- revision is a different ordeal than initial scoliosis surgery. I think this was my surgeon's first large, multiple issues failure. He is a good surgeon. I am not blaming him. I am in a very difficult position now, and I need help from the group.
    The revision surgery I had was very difficult to recover from. I never want to go through it again. I am not sure how well I would survive a more complex revision now that my condition has deteriorated from the last revision.
    SAH

  • #2
    SAH
    I'm sorry to here about how much difficulty you are having. I know that you stated in your post that you wanted only people that have had revision of their revisions. However, I had to read your post twice when I read the part about your surgeon had not done a long scoli revision before. Please do find another surgeon that does adult scoli revisions. I noticed that you live in Calif. There are several very competent surgeons that do a lot adult revisions at UCSF. I'm sure the doc you saw is a fine doctor, but it requires a lot of practice and skill to do a long revision, and he obviously didn't have that skill, i.e. the problems you now face!
    SandyC
    SandyC

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    • #3
      Sah...

      I agree with Sandy, even people who've only experienced one Scoliosis surgery can lend you support. My daughter is facing her first surgery in three weeks and I know I've found a lot of support from everyone on this forum.

      We will all keep you in our thoughts and prayers and I will be asking my daughter's surgeon if he could recommend a great adult surgeon who could help you as will other people. I've learned that word of mouth is the best recommendation for a surgeon you can get.

      Hang in there.

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      • #4
        Sah:

        I certainly can sympathize with your situation as I have had multiple revisions throughout my entire life with supposedly some of the best scoliosis surgeon's available in the United States. Like you my fusion is from my neck all the way down to my tailbone measuring well over 120° even with the revisions. If you do not mind me asking, how old are you? Were you able to walk prior to the revisions surgery? Like you I also have found myself wheelchair-bound with extensive nerve damage. And unfortunately most every scoliosis surgeon I have dealt with over a period of 30 years most always have some type "God complex." When everything goes well they want you to be there promotional tool to promote their "business" but when there are numerous complications that may sometimes be "questionable"... Well, let's just say you must be careful, very careful. But I believe with all my heart that there is always "hope in finding the right surgeon." A person that has the skills, knowledge as well as the compassion to understand what we go through in life. I myself am looking for just one good adult scoliosis revision specialist, hopefully just to give it one more shot...

        I really think that if people would get together and start speaking out about the bad scoliosis surgeon's then just maybe it would not be so difficult to find the truly qualified, excellent surgeon's among the bunch. I do not mean to sound so disparaging because their truly are A LOT OF good physicians also, but it's pretty easy to the intimidated and fearful when someone has your life in their hands, when you feel more comfortable believing that the surgeon that put the screws, cages and rods in your back will hopefully be the one that would have the best idea of how to remove or modify the instrumentation if necessary. It's difficult for us to find and start a relationship with a new surgeon that we want to trust and give us hope. If anyone has a list of the scoliosis surgeon's that would be considered bad or nonqualified I would certainly like to know about it.

        Lastly again as you I have tremendous daily pain, yet I take little to no medication because I need to be in my right mind to continue on with my work, and it is very difficult to concentrate when your mind is a blur with heavy medication. For myself I simply stay awake until I am completely exhausted, I mean truly exhausted. Then just a couple Tylenol and one Ambien to help me sleep for at least six hours. I need help turning every night in bed and I sleep with at least five pillows. So please believe me I feel your pain, fears and frustrations and if I hear OF A GREAT adult scoliosis revision surgeon I will let you know I promise.

        All my best, Frankie
        Frankie Bush 130% curve after multiple fusions with rods

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