This was new info to me, but perhaps to you, the experts. Wondering if any sight or hearing loss has been directly attributed to CMT, but a physician, or if you have done so yourself?
Yes, 50% loss in left eye due to muscles in lid not lifting lid . Had surgery to cut the tissue out from lid to create more lift they shortened the muscle tendon, but needs doing again and eventually lid would be unable to close. So, opted to do the one surgery b/c kids were very small and I needed to keep eyesight to take care of them.Sorry had a long day and typing is not great atm
This sounds like the operation that the people who suffer with OPMD (Oculopharyngeal Muscular Dystrophy) go through.
My goodness, it seems there is no end of what is affected with CMT! My mom is 82 and has one eyelid that droops over the eye, they wanted a fortune to do this lift with very little guarantee of it helping, but I'm not sure they were going to work on the tendon.
I have partial hearing loss which is probably due to CMTS. 5 % of people with CMTS experience hearing loss & because it is an inherited condition that is why I think my hearing loss is related. My Grandfather had severe hearing loss with his CMTS. Mine is tolerable with hearing aids.
I didn't know one could also have a loss of vision also. There are so many symptoms and so few Doctors with knowledge about CMTS. Hell it is even hard to find a Dr. who can diagnose the disease.
Since I am still pain free I avoid Doctors for now & am following the advice of the Dr. who diagnosed me--"There is nothing I can do for you & I will see you in 20 years" She did send me to a Podiatrist who prescribed my AFO'S.
I am aware that many with CMTS have it worse than I do & seek Doctors help.
Hi khill, it's good to hear from you! I'm hoping the day is soon coming when no one will hear that there is nothing that can be done for you! Glad the hearing loss could be managed with hearing aids. My husband has them for tennitus, it took 40 years to find an audiologist who knew that there was a certain type of aide that would block out the 'noise'.
I went through a hearing test and found out i have 40% hearing loss in 1 ear and 50% in the other, but i ddn't know until recently that it's associated with CMT. My Drs dont know much about CMT.
I have 30% hearing loss in both ears. I've type cmt1a
We've missed you! Hope you are as well as you can be and that this winter is just about over for all of us! We thought it was here, but it's gone from 80 down to freezing again with horrendous storms and winds! UGH!
Sorry to hear of the hearing loss. I was hoping this was something that would have passed you all by!
It's good to hear from you too! How is the PX working for you these days? I am always hopeful that there is something that will make a substantial difference!
I am very sorry to hear that such a master musician has yet another challenge to his art, but you are still absolutely amazing!