My Introduction, Voice/Epiglottis question

[Guest guest]

Hello Everyone,

My name is Kathy, and I was diagnosed by my parents, 41 years ago, when I

was 4. I wear braces, type with two pencils and get by alright. I had

breast cancer 2.5 years ago and got through the lumpectomy-lymphoidectomy,

chemotherapy, radiation and total hysterectomy and was finally feeling

really well again.

I lost my voice 2 months ago in mid January and have had no voice since. I

had a swallowing study done and my epiglottis is paralyzed so I think my

vocal chords may be too. I've had difficulty swallowing for a few years and

have had barium swallows that show reduced movement in my esophagus. My

weakness seems to be in my jaw and thoughout my throat and esophagus. It's

difficult to eat and if I start to have problems with pneumonia, I'll have

to be tube fed.

My question is ... has anyone had their CMT attack their vocal chords,

esophagus and epiglottis like this and what did you do about it. I'm trying

to find out about equipment to amplify my voice and have had no luck. I'm

taking 4 University courses and hoping to be a counsellor but I need a

voice! This is the last thing I expected to lose with CMT and it's

derailled my plans for now. I'm going to an ENT on the 23 of March and

will hopefully have some answers but I would sure like the advice of some

who's been there!