Knee dislocation!!

[Laurabev]

My cmt is bad but for me the worst part is the knee dislocation having them since 7 years old now 30! I stopped going to the hospital when I was 16 because they wasn’t making me worse with all the pots etc! So after all these years and people telling me things change it was years ago finally went back to the hospital first doctor I seen told me the problem was my hips fix them will never have a knee dislocation again we are referring you to see a specialist I walked out the hospital with the biggest smile on my face because I had been in a dark place all year but I felt like I couldn’t come with them anymore after having 52 knee dislocations in 6 months I was dreaming of all the things I would be able to do with not having to worry of the pain of my knee going any minute fast forward to my specialist appointment we couldn’t operate but nothing going to stop it you going to have them no matter what! Walked out the hospital in tears! So question I need new ways to cope with this pain because it’s got to the pain I am living in fear off it sorry for the rant/long post Laura x

[HorshamMalc]

Hi Laura, I have CMT1a and a history of knee dislocations. Although I'd obviously had the CMT all my life, unlike you it didn't really cause problems until I hit my 50s. I was having recurrent diclocation problems with both knees and, as recreational walking became more difficult, I took to cycling. I started off doing just short local rides but the bug caught me and it evolved into my becoming a serious club cyclist. This seems to have significantly strengthtened my upper leg muscles and I'm pleased to say that at 66 I've not had a knee dislocation for over 10 years. I can't over-emphasise the benefits that cycling can bring to CMT sufferers. Once you gain the confidence, balance is not an issue as it comes from upper body rather than lower legs and there's no latteral strain on the knees. It's also non-impact which is good for the knee and hip joints of those of us with no 'spring' in our step. Primarily though, it gives you the ability to get out in the fresh air, and achieve a level of aerobic fitness that's hard for a CMTer to achive by any other means.

I hope this might be of help to you. Best wishes Malcolm

[Laurabev in reply to HorshamMalc]

Unfortunately I had to stop riding a bike because of knee dislocations Thankyou for your advice though I appreciate it lots of love

[Amanita]

Hi, Laurabev,

I'm sorry you have such a severe form of CMT, and so much pain.

Just in case you haven't already tried, is there anything a good orthotist could make for you to support your knees?

[Laurabev in reply to Amanita]

I use to have all sorts of knee support but my knee once dislocated while wearing it and I couldn’t get it back in to joint until I got the support off so scared me to not want to wear them anymore I will look into it thankyou

[Djbomer]

Hi l used to have knee dislocation 30 years ago. A surgeon wired my per teller and it hasn’t happened since. Good luck and try and keep your muscles working because when they have gone they don’t come back. Dave

[missspain]

see another doc there is help but you have to find it.dont give up

some doc or should i say consultants are better than others.

all the best x