CMT Central

Hi, Firstly let me introduce myself. I was diagnosed with CMT about 14 years ago when I was still at school. I have coped, as we all do up to now. Recently my condition has got worse, and this week I underwent surgery to correct the deformity in my little toe.

Trouble is I am struggling to recover, has anyone else been through this?

I am almost too weak to use the crutches and feel so fed up.

Help!

Hi H and welcome to the site, sadly I have not endured surgery so cannot comment, but am sure that someone on here will be able to help....................

Hi Helen,

Welcome to the forum

I have had CMT related surgery. I had a lot of work done on my left foot in 2006.

I found recovery VERY hard going especially to begin with and even more so in the first few weeks. I could barely move. I too was too weak to use crutches but the hospital sent me home with a Zimmer frame (Yes! I was 24 at the time and hopping around on a Zimmer frame).

I even had one upstairs and one downstairs at home.

I am surprised the hospital even sent you home on crutches if you couldn’t walk. When the physio came to see me as part of the discharge process, they instantly gave up on the crutches and brought me a Zimmer. Even then I was weak. I couldn’t even get up and over a 2 inch step for about 3 weeks.

It was about 4 weeks before I could graduate to crutches and it was very hard going but you get used to it.

Don’t give up, I just felt so defeated at being almost totally dependant on my partner that I got weaker and sunk into deep despair. My parents had to stage an intervention along with the local physio to get me out of bed after about 2 weeks and moving around.

Keep positive, try and get a Zimmer…. it is not trendy AT ALL! but it got me moving and allowed me to build my strength a little.

Welcome Helen. Keep posting.