Hi all you CMT'rs out there, hope you are all well. With the cold weather here, I have less strength! Me too only like the cold weather due to wearing the fashionable boots. Can walk way better with the boots...but come spring and I slip back into runners or summer shoes, ankles feel week and it takes me a while to get walking with stability again.
Ok, anyone out there heard of "triple fusion" in the ankles????? My acupuncturist told me about it cause he knows someone in my area with CMT and this individual is going to have it done, trying to connect with her as never thought there was someone in my area with CMT.....
I don't know much about ankle fusions, first hand, but I've been in contact with others who have and it sounds like it is something you must really be cautious of. With Charcot Marie Tooth you do not regenerate tissue to heal as "normal" persons do. We sometimes think we can "fix" our problems and in the process can do more harm in the long run, than doing good. So, be cautious, research and get many knowledgeable options from experienced CMT doctors who are aware of our disease. I know it might not be what you wanted to hear but the cases I've known of, the outcome might have been good at first but then after a year or so it was not so good. You are young enough, I know that you are looking to solve the problems while you are young enough to be more active, but activity level in any CMT'r has to be addressed in moderation, and activity must be changed often so as to not fatigue any one muscle group. I have been an aerobic dance instructor, and a runner but, I over did my activity to the point of not being able now at age 57, to run at all, or walk any distance. I miss being an active person, so I can empathize with your desire to keep fit and I do encourage it; As the saying goes, if you don't use it, you lose it; But, over use will cause atrophy in a CMT'r as well. Be kind to your body, and you'll have use longer, than if you push it too hard and damage tissue you cannot regenerate.
I'm not a doctor or a professional in the medical filed; I'm only speaking from my own experience and the experiences of others I've known about.
I highly recommend seeking a care professional who has knowledge of CMT as it is not taught in the normal medical journals; There is more knowledge now that back 20 yrs ago, but it's only taught to those seeking that specific knowledge. General doctors and nurses know very little if anything.
Here to encourage and support in any way i can and hope I did not come across too negative!
Yes I had that surgery when I was 15. It is called a "Triple Arthrodesis." I had that performed on my left foot but did not have the right one done. It has been 100% successful for me with no issues., Had it done at Shriners Hospital but they would not do the surgery on anyone over the age of 15. I think they will do the surgery on older people now but not sure.
It is a major surgery and will be on crutches for six months (long-leg cast) and have to learn to walk all over again. Don't get both done at same time! It was extremely painful for a week but worth every tear. It is totally impossible to twist your ankle after the surgery and I don't have "drop foot" neither.
GREAT to hear a success story; I agree it should be done early on while a person is younger and still has the possibility of healing quicker as cells replace earlier on but as we get older that regeneration slows tremendously; even in "normal: conditions we heal slower at an older age. Shriner's were great to my children but thankfully they got success just from foot inserts early in their teens.