Guest guest Posted October 15, 2006 Report Posted October 15, 2006 When it comes to CMT children, parents need to get many expert opinions before settling on surgery as the answer. Adults with CMT don't always keep in mind that CMT is different in children so they rush to say yes on surgery. When it comes to CMT children every option needs to be explored before they have surgery. Surgery is not the best option for CMT kids unless it is absolutely necessary. My son Spencer at 16 & 17 had to have surgery to get his feet into a weight baring position. His arch on one side became so high he was just about walking on the top of his foot. This was after he was out of his AFOS for a year and off his feet from being hit by a car. When Adam was 5, I was told by a specialist at Children's hospital that he needed surgery. Second opinion specialist said Adam didn't have any good tendons to split and he wouldn't fuse a child's bones because of the lack of mobility after a fusion. Surgery wouldn't help Adam. Third opinion was a PT. Her believe was that kids are growing and stressing out their CMT muscles why cut them and give them more stress. In my childhood CMT case the doctors jumped the gun and did my surgery to soon. 10 years later Adam is doing well he has not needed surgery yet. He wears AFOS and is very weak . The AFOS keep him mobile, happy and active. Quote
Guest guest Posted October 16, 2006 Report Posted October 16, 2006 I think 15-16 ish is a good time to have surgery done if it can be put off that long. I had surgery done at 7 and 19. I can't complain about the one at 19 it did the trick. I am 38 now. Quote
Guest guest Posted October 16, 2006 Report Posted October 16, 2006 When I was 15-16 I had a triple arthrodesis and tendon tranfer on both feet. I wore AFOs six months prior to this just to see if this was something I should consider. I am now 36 and have had no problems since. Except for " drop foot " , you know, trip over nothing. I have CMT type 2. C. Quote
Guest guest Posted October 17, 2006 Report Posted October 17, 2006 Hi , I had that surgery too when I was a teenager at the U of M. I'm not 28 yrs old and am back in braces during the day. My ankles and balances are to unsteady without them. I was diagnosed with type 2 at agage 5 or 6. Quote
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