Vocal Cord Paralysis and CMT

[Guest guest]

Vocal Cord Paralysis and CMT

By Crabtree, former CMT International

While flying home from a trip to Florida two years ago last March I

found I not only had blocked ears but I couldn't speak. I'd had

blocked ears before and a good yawn or a few swallows would usually

equalize the pressure and let me hear. This time it didn't work.

Not being able to speak, worried me but what could I do, 30,000 feet

up?

On the ground my ears cleared in about an hour but not the voice. I

could force a raspy whisper but that was it. I thought a couple of

days would help. Not so. My voice was never to be the same again.

A trip to my local ear, nose and throat specialist and a second

opinion were no help. Neither could give me an explanation as to why

my voice was raspy, why I had no volume and why I sounded as though I

had two voices sometimes and none other times. I thought I had cancer

but that was ruled out much to my great relief.

Dr. Chan, our CMT pulmonary and breathing specialist, suggested I see

Dr. Lorne Tarshis, an otolaryngologist at the Wellesley Hospital in

Toronto. He immediately diagnosed a paralysed vocal cord, the left

one. He suggested I give it a year and then, if it hadn't come back,

he'd see what was available but he told me about Teflon injections

that could be put along the vocal cord to make it thicker.

However, this procedure required a general anesthetic which I don't

want.

Then I read in The Mayor Clinic Health Letter about thyroplasty, a

procedure that tunes your vocal cords and is done under a local

anesthetic. I wrote Dr. Tarshis and asked if it were possible for him

to do this with me. He asked me to come over and they'd take another

look at my vocal cords with a little scope they put down your throat

featuring a light on the end that shows them on a screen exactly what

I have there.

My vocal cords were not always touching but the ends weren't terribly

paralysed. This meant they could perhaps put a small wedge of

silicone in beside the paralysed vocal cord thereby pushing it over a

little further towards the normal one. He also told me he could

operate in 10 days or three months time. It was up to me. I decided

to get it over with fast and went in hospital June 29/93 to have what

is called Ishiki Laryngoplasty Type I done.

I went in hospital the day before so they could run tests and have me

ready for the next morning. I clued everyone in about my CMT and what

anesthetics and drugs weren't to be used. I think that wait, spent

lying on a stretcher outside the operating room, is the most lonely

and frightening time in a person's life.

The procedure took about an hour. I actually saw the surgeon cut my

throat, a dubious delight, from his left to right, even though there

was a small drape in front of my eyes. My throat and neck were

anesthetized; I could feel nothing.

Several times I was asked to count. Usually it came out in whispers

or hoarse raspy tones. The last time someone actually shouted at me

to talk, don't whisper. I told them I knew the difference but all I

could do was whisper. The plug was too small. Then the right side

went in. As I counted, my light raspy one, two, three turned to a

resounding four, five, six that bounced off the operating room walls.

They had found the right size for me and there was nothing left but

to secure it in place and sew me up.

I was a bit rocky for the next 14 hours or so but I felt pretty good

and refused further drugs. I left hospital the next morning before

lunch. Then I realized that the site of the operation had swollen up

so that I couldn't speak at all. This frightened me because no one

had told me that I wouldn't be able to talk. I called the doctor's

office and was told it would take several weeks to six months to have

the voice I'm going to be left with. Each day after that I regained a

little more voice as the swelling went down.

Today, almost three months later, I find that most days I have a

fairly presentable voice. When I am really tired my voice is weak to

non-existent. If I try to do a workshop or speak for an hour or two I

simply run out of voice. I can work with those two scenarios and they

are somewhat preventable. The important things are: My voice is

understandable and it is much easier for me to speak. I am no longer

blowing a lot of air out through the gap between the two vocal cords.

Because I'm using less energy to talk, I'm not as tired as I had been.

One of the interns drew me a little picture of my vocal cords that I

will try to reproduce here to show you what mine were like and what

they are like now. He also said that I should treat my voice with

respect and use every amplifying device I could find. Consequently, I

now have a little headset speaker with an amplifier that I can use

for guest speaking and I use a small amplifying headset instead of a

handset for my telephone. This way I can speak softly and still be

heard.

What caused this paralysis? I can only guess that two years of using

a speaker phone that you tend to force your voice a little to use,

long conferences where I was the only one speaking, and a

predetermination to weak muscles thanks to my CMT, along with some

hefty singing in the car in Florida did the trick.

We all know that people who have CMT can lose the use of a muscle

group if it is served by CMT-affected nerves and we overuse it. I

think I just wore my left vocal cord out. My left diaphragm muscle is

paralysed too, so perhaps this is the way CMT shows in me.

As I hear from more people who have paralysed vocal cords I am

learning how one should proceed.

First, if you are hoarse for a long period of time, please have your

voice and throat checked out. It could be something else; it could be

your CMT. Go to a voice specialist who is called an otolaryngologist.

Most ear, nose and throat specialists won't know enough to diagnose

you.

Carefully figure out if there is a treatment for you and look

everywhere. I found what I needed in a health letter. It's up to you

to advocate on your own behalf.

Ask questions: Write them down and get answers. Don't say yes to any

procedure until you have walked yourself, with your doctor's

guidance, through it and asked every question you can think of

including what drugs do they give you to keep the swelling down

afterwards. I was given Prednisone. Something gave me added strength

for about a day after the operation but something also made me feel

as though my entire body was going to explode. I almost ripped the IV

tubes out of my hand myself I was so anxious to stop the drugs.

You know what you can tolerate. It is up to you to know what drugs do

and what the side effects could be. Most doctors will think this is

not your business but IT IS YOUR BODY! Ask questions, get answers or

go elsewhere to someone who will answer your questions.

[Guest guest]

Thanks, this stuff was helpful to me.