Cmt

Hi I'm a 45 years old I have cmt type 2 I've had both feet fused the right one hasn't worked after two operations now my consultant says it's time for your ankle to be fused ? But to be honest I would rather have my foot taken off because he says the way my foot is he can't guarantee the pain or the operation will work cause of the my foot hasn't worked,so me and my partner have thought about it for a while and have looked it up a lot of people sat that it's a big decision but I have come to either fused that will make my foot have 34 screws and metal plates in? Or have foot off ! If I have foot off I will have no pain anybody there to give me any advice,thanks Marc.

5 Replies

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  • Hi Marc,

    I wouldn't do it - phantom pain Your body remembers you used to have a foot and it isn't there so you will have pain - and it isn't easy to tolerate

    Good luck

    Jealous One

  • I don't know, what a big decision

  • HI , Jealousone could be right about phantom pain it does happen. but did the doctor say he can not guarantee the pain will go away or you should get better with time to heal and the pain will get better right ? . i would rather have a foot no matter what it looks like than not having one.and is the pain is short term . i mean the big question is ,will the pain go away on the long term ? as they say no pain no gain ! you are still young Prady 123

  • I have drop foot on both feet bad I just pick up my feet higher I guess ! I keep reading about fusion etc. Our doctors here in Canada have never mentioned this nor do we ever get a referral to a neurologist just plan family physician which majority have no idea what CMT is never mind the pain and obstacles we face everyday !

  • My son had stepegs put in both ankles to prevent his ankle from turning outward. He had that surgery when he was 12, he is now 27. His podiatrist wanted to remove them when he was about 16, and replace them with an upgrade. Unfortunately , insurance would not approve it. Now he is medicare and it is like pulling teeth to have them approve anything. Something you might want too discuss with them.

    Good luck, this disease sucks.

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