Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 In a message dated 09/07/00 06:23:19 PM Pacific Daylight Time, joyceanns@... writes: << It's just one of those things. You can only do the best you can. I had surgery at 7. I had 1 Dr. tell me 2 years ago that both of my boys needed surgery NOW. I had another tell me no way! I had a Dr. tell me no to AFos . I had 2 Drs write RX for them. Some people say PT helps other say it never did a thing to help. I thing is to do the best you can. Find a Dr. you trust pray a lot. There is no wrong way. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 I have had multiple surgeries including the tendon transfers it sounds like you are referring to. I had this surgery when I was 9 years old, and I think that was too young. I have since had a younger brother and a younger sister diagnosed with CMT. When Joe was 13 he had the tendon transfers that you refer to. He has done really well since then, at 22 he's working full time as a graphic artist for an engineering firm in Pittsburgh. , my sister, has also done well without any surgery, although her feet are twisted and she wears children's shoes. She is also 22(they are twins), and has just graduated with her degree in elementary education from the Indiana University of PA. Looking back on all this, the bottom line I think, is wait if at all possible to have any surgery done. If you are not in CONSTANT pain or in danger of hurting yourself in a fall, you can afford to wait for surgery. With CMT degenerative changes WILL continue to happen all the time. Even after you have something surgically corrected, the correction is only temporary. Some other deformity is slowly happening, sometimes destroying the results of the surgery you already had. I will be 34 years old in August, and on July 24th I will be having my 16th surgical procedure on my right foot. My brother and sister seem to be doing so much better than I did at their age. Two things come to mind: either my situation was much worse off to begin with and I needed the surgery at that time, or my first surgery was done too soon, before the deformities were severe enough to warrant surgery. I don't think I will ever know for sure which is more likely the case, as my parents were new parents(I am the oldest of 4) at the time of my surgery. They only did what the doctors scared them into. They were told that without this surgery, I would end up in a wheelchair at the age of 14. I am close to 34, working a full schedule as part of a busy open heart team, and living on my own, relying on friends to help me with my house and shopping and cooking and cleaning. But I am in great pain all the time, and I fatigue easily. I truly believe my work keeps me going, and I dread the day I have to give it up. So, I guess the point is keep going WITHOUT surgery as long as you possibly can. And always have goals; hourly, daily, weekly, monthly, yearly! Best of luck to you! I'm sure I'll be writing more as I recover from my own surgery in a couple of weeks! TTFN Joyce Erie, PA Digest Number 350 > ------------------------------------------------------------------------ > Make new friends, find the old at Classmates.com: > http://click.egroups.com/1/5530/13/_/616793/_/963134949/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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