Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi , I feel so awful that you are going through this. If I was in you shoes I would have the other fusion done but only by a doctor that knew CMT backward and forward. We have a group of doctors that I go to at the Southern California Orthopedic Institute. Many of the doctors are professors. Sevearl are on hospital boards. Our doctor is on the board of Childrens Hospital in California. I feel very strongly that about having a doctor that is very experienced with CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 , Oh I am so sorry you have to endure this cr**. Definitely, don't go back to the same doc, and I swear if I had ANY surgery " fail " I'd be writing letters like mad to doctors and accreditation boards, not to mention getting myself an attorney. Take this for what it is worth - I haven't had the ankle fusion...and I don't wear AFOS - but, in your email you said you were leaning on the outside of your fused foot. Perhaps an adjustment in your AFOs is needed? After your fall or after the fusion were your AFOs adjusted accordingly? I once walked on the outside of my left foot/right foot rolled in and it was tendon surgery that corrected that. Definitely errase that amputation idea from your mind. I have heard that a few times too and it just freaked me out. I fought those idiots off and once I got the right doc, I never needed amputation. Surgery is hard enough to deal with let alone that kind of scare tactic. What you need are some other opinions by other doctors who specialize in orthopedic foot surgery. Let me know if I can help you locate some. Seems to me a fusion is so permanent and I wonder how the doc who did it managed to not help you this way. I hope you can relax a bit - get some different opinions and find the surgeon who is right for you. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 , I can not believe that your doctor even suggested amputation. It frustrates me to no end to hear of these types of comments that doctors make! How is that not supposed to affect your outlook?? I had both ankles fused as a child, (I was diagnosed at age 5), and had no trouble with either ankle. Prior to the fusion my ankles were turning in and I was falling constantly. I've worn AFOs since age 5 as well and they really helped with balance. Try not to let that ignorant doctor fill your head with worry. Just shop for a new doctor and I'll hope for the best for you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 , I had both of my ankles fused. My right ankle was really bad when I had it done 14 months ago. I was walking on the outside of my foot. My ankle was starting to protrude again about 5 months ago, so now I am wearing a brace. It is the plastic kind that fits right into your shoe. I love it. I have been wearing it for about 3 months now and haven't had to go back at all to have it readjusted. I have had people say to me that they would rather have amputations done rather than go through the surgeries. I don't say anything to them, but i do just shake my head and walk away on my own two feet. Good luck to you. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Thank you - it was very helpful. this is a great group and i am learning more all the time. i may just have mine done as well. dave Quote Link to comment Share on other sites More sharing options...
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