Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Hi You really went through the gamut out there. I'm so glad to hear you don't have CTD, but very saddened to hear that you are not a candidate for another untethering. Also the stroke in the spinal cord ... what a surprise, although given all that you went through with that surgery, I'm not too surprised to hear this news (remember, I saw some of that incision before it healed all the way.) I am so pleased to hear how well your time went at the SB conference!! This is such good news. Did the head of the SB org. say anything to either of you afterward about possibly including tc in more of their literature or their website? Again , I really am sorry to hear that you didn't get any positive news (with the exception of no CTD) at the doctors' appts., but it sounds like you finally, for once, got all the correct news about what's going in your back. Kathy Minnesota > Me again, gang.... > Minnesota was two very different experiences for me. > > It was great to meet B and she was a doll to put up with me for > three weeks. We competed for the ugliest scar contest and ran all > around town with similar walkers and scooters. Good thing she has a van! > > First of all, I spent six days being tested, MRI'd, and seeing doctors > at Mayo in Rochester. They all agreed that there is no way that I have > Charcot-Marie-Tooth just because my legs look like someone with > advanced lumbar spinal nerve damage and test to have axonal damage and > demylination on nerves in my legs (that's the polite version). > > Unfortunately, they also agreed that, for me because of the infections > I had after the TC release at L4,5, any more spinal surgery is likely > to do more harm than good. The place where my doctors here thought I > had a syrinx at T9 is really another tether and where I also had a > stroke in my spinal cord, probably due to the trauma of that TC surgery > (and it bears watching to make sure it's not anything else) Hence the > new problems and pain there. My bladder is still totally flaccid > (darn), and I do have damage to one kidney from all the infections I > had as a child. So it's back to full time cathing. If the pain gets out > of control, I'm not a candidate for the pump or stimulator. The pain > doc suggested adding tegretol to my mix. So, they can't fix me, but I > did get some answers to my questions. Not that I liked them all - > > Then we finished our work on our presentations on Aging with Spina > Bifida and were off to the SBAA convention in Minneapolis. > > The entire conference was most interesting...for any decline, every > doctor who presented said to check the shunt first (for those with > shunts, of course) and if that was fine to check for TC! I met quite a > few doctors whose articles I had read in various scientific journals > like McClone. Many pointed out that if my lipo had been addressed > when I was born I wouldn't have grown up so impaired. Not that I ever > thought of myself that way...I just always walked funny and had trouble > with bowel and bladder > > Our presentations went over well (the tape that was made of our 90 > minute session was sold out!) and I was able to get up on my soap box > about TC being one of the best kept secrets for people with SB. > > All in all, I was very glad I went. > > V > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., rick@... > Quote Link to comment Share on other sites More sharing options...
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