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  • #16
    Strong Hospital in Rochester was one of the best places in the 70s for scoliosis. They continues to train many doctors in that area. One of my doctors here in Georgia was trained there.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

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    • #17
      Hi Rainbow!
      There is no revision specialist currently in Rochester. I saw the big scolio doc at Strong two years ago. He wasn't the least bit helpful.
      1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

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      • #18
        Originally posted by Back-out View Post
        Thank you for the elaboration, Linda!
        Linda:

        Would this apply to someone who had a decompression above (or for that matter, below) the area deformed by the scoliosis?
        Definitely below. I'm not sure about above.
        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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        • #19
          Originally posted by JulieBW View Post
          Hi Rainbow!
          There is no revision specialist currently in Rochester.
          Paul Rubery did a fellowship at UCSF, where a large percentage of what they do is revision surgery.

          --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
            Originally posted by JulieBW View Post
            Thanks, Linda for your continued thoughts. People who post here almost unanimously elect to have surgery because of severe pain, so I am just assuming that I will also come to that conclusion. My walking became significantly slower about four years ago, due to what I now am describling as a sensory disturbance that made my front thigh feel tight, also tightness around and above my knee. Three years ago both an EMG and MRI found nothing. Now I am developing symptoms that are more typical. My GP's diagnosis at this moment is radiculopathy, which is really more of a symptom, not a cause.
            Strange, my leg symptoms are/were much less than yours and they found a cause for it. I have degenerative disc disease in the L5 - S1 disc. It is mild with some bulging and a slightly pinched nerve. They gave my an epidural steroid injection and the symptoms are all but gone. Did they look for disc disease? You would think that would have shown up on your MRI. Yes, radiculopathy is a symptom. I have it in my left arm as well, so had a cervical MRI and a cause was found there, too. There is a slightly pinched nerve and a bone spur in my C4 - C5 disc/vertebra. I'm REALLY surprised that they haven't found anything in your case.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

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            • #21
              I had revision surgery because I couldn't walk. My fusion had grown from L5 to S1 on its own and was pressing into my spinal column. The doctor removed most of the fusion and I got immediate relief from the pain. The only problem I have with it now is the disc is degenerating, but they won't fuse because there is still partial fusion there and it is show signs of growth!
              T12- L5 fusion 1975 - Rochester, NY
              2002 removal of bottom of rod and extra fusion
              3/1/11 C5-C6 disc replacement
              Daughter - T7 - L3 fusion 2004

              Comment


              • #22
                Linda,
                Thank you so much for this information about Rubery. It is very sad that he told me nothing when I saw him two years ago, not his background, did not want to see me anytime in the future. I had sensory loss in my left leg, affecting my knee and foot. I asked him about any kind of base of spine surgery and he became irritated. If he had simply told me what you recently shared about decompression surgery, that would have been helpful. I told him my walking and standing ability were significantly limited, but he wasn't interested I think because my symptoms weren't "classic". He sent me off to another ortho about my knee. Basically I think he thought I was nuts, or maybe an anxious woman with nothing but arthritis. His first words to me were, "So how many years young are we?" Turned me right off.

                It would be so much simpler to move forward with him instead of going to Buffalo. I just need to decide if I should give him another chance, now that my symptoms are more clearly neurological.

                Rainbow, your surgery was done by Jackman, is that correct? I know you know he's retired. Someone else who posted here briefly also saw Rubery once, and he blew her off as well. She ended up having revision surgery in Buffalo, which is how I got the name of the revision specialist there.

                Rohrer, thank you so much for that information. At the time of my MRI (three years ago), I also saw a neurologist. His diagnosis was Miralgia Paresthetica, which he attributed to my obesity and I'M NOT EVEN OVERWEIGHT! But I believe that those symptoms are also common with stenosis. The slow progression of my symptoms is also consistent with stenosis, so that's I think where I'm heading. I have learned more here and from other internet resources than I have learned from the doctors I've seen. GRRRR!
                Last edited by JulieBW; 06-01-2010, 10:53 AM.
                1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

                Comment


                • #23
                  Originally posted by JulieBW View Post
                  Linda,
                  Thank you so much for this information about Rubery. It is very sad that he told me nothing when I saw him two years ago, not his background, did not want to see me anytime in the future. I had sensory loss in my left leg, affecting my knee and foot. I asked him about any kind of base of spine surgery and he became irritated. If he had simply told me what you recently shared about decompression surgery, that would have been helpful. I told him my walking and standing ability were significantly limited, but he wasn't interested I think because my symptoms weren't "classic". He sent me off to another ortho about my knee. Basically I think he thought I was nuts, or maybe an anxious woman with nothing but arthritis. His first words to me were, "So how many years young are we?" Turned me right off.

                  It would be so much simpler to move forward with him instead of going to Buffalo. I just need to decide if I should give him another chance, now that my symptoms are more clearly neurological.

                  Rainbow, your surgery was done by Jackman, is that correct? I know you know he's retired. Someone else who posted here briefly also saw Rubery once, and he blew her off as well. She ended up having revision surgery in Buffalo, which is how I got the name of the revision specialist there.

                  Rohrer, thank you so much for that information. At the time of my MRI (three years ago), I also saw a neurologist. His diagnosis was Miralgia Paresthetica, which he attributed to my obesity and I'M NOT EVEN OVERWEIGHT! But I believe that those symptoms are also common with stenosis. The slow progression of my symptoms is also consistent with stenosis, so that's I think where I'm heading. I have learned more here and from other internet resources than I have learned from the doctors I've seen. GRRRR!
                  That's SO disappointing. Thanks for letting me know.

                  --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

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