Three Things Your Doctor Won’t Tell You
Acquiring vocal fold paralysis is like suddenly being handed a different body to live in. It’s similar to the old familiar body, but certain features don’t work the same way. I get the same feeling when I get into a rental car and turn on the wipers while I’m trying to find the gearshift...
I was shocked by how little practical information my doctors volunteered. I thought it might be helpful, or at least amusing, to talk about some of the stranger side effects I’ve experienced. I hope you’ll use the comments space to add your own...as well as tips on how to deal with them!
The Mighty Burp
A big ol’ belch is hard to beat for humor and satisfaction. There’s nothing like slugging back a cold soda and happily urping up a big, fizzy burp. It may be embarrassing, but it feels good and makes you very popular with any six-year old boys in the area.
The first time I felt a belch coming after the paralysis occurred, I thought I might actually die. Seriously. I could feel the air trying to come up, but my larynx had absolutely no idea what to do about it. I’m guessing that normally, the larynx opens and lets the air out. But mine wouldn’t. I couldn’t let the air out, and worse, I couldn’t breathe in. What to do? I made a fist and Heimliched myself; a quick push under the rib cage, and that did the trick. It’s gotten easier, but I still have to “force” the burp out with a push to the stomach. Sometimes a noisy, powerful exhalation will also do the trick, but adds a whole ‘nother layer of grossness in a social situation. Any tips?
Hucking up Stuff
Pardon my crudeness, but... I’ve noticed that mucous tends to accumulate around the dead vocal fold. I’ve seen it on video when my otolaryngologist has the endoscope in there, and I can certainly feel it in my throat. It’s hard enough to speak and swallow without having a wad of mucous in the way, but what can you do? We VFP folks have something called an “ineffective cough”, which makes it tough to dislodge sticky obstructions. I haven’t found a great way to deal with this yet, so there’s no handy hint from me. The best I can do is a little “hairball hack” to dislodge whatever’s gumming up the works... I’d welcome any suggestions.
That Giddy Feeling
It can take an enormous amount of air to make a sound when you have VFP. Before I had the Cymetra injection, it took me over 700 cc’s of air to produce the same amount of sound that a person with normal cords could make with 150 cc’s. In other words, I ran out of air not only in the middle of a sentence, but sometimes in the middle of a word. Hyperventilation swiftly followed any attempt to speak in complete sentences. I tried inhaling between words, but frankly, most people lack the patience to carry on a conversation with someone who pauses that frequently; and who could blame them? I tried rushing, too, but that just made it harder for people to understand me. All it took was “Hi! How are you?” to make my body scream for oxygen.
The only advice I can offer for helping with this is to get the cord “plumped up” with Cymetra or fat, or medialized as your doctor recommends. Or take a huge breath before you speak, as if you were going off the high dive. Otherwise, every conversation will leave you dizzy.
Anybody else seeing stars when they speak?
...and one thing your doctor will tell you:
A serious concern with VFP is aspiration of liquid, food, or saliva into the lungs. You’ve probably had a conversation with your doctor about this risk. (If you haven’t; initiate one immediately) Normally, both vocal folds come together like a barn door, protecting the trachea and preventing foreign objects from entering the lungs when you swallow. In addition, your epiglottis folds neatly down like a hatch; providing further insurance against choking.
My speech pathologist taught me how to swallow effectively. It’s not the most glamorous analogy, but she said, “it’s like flushing a toilet.” Push that liquid down completely with a solid, firm flush. Make noise! You can exhale strongly through your nose afterward - making sure your throat is clear before you inhale again. I started really paying attention when I swallowed; really thinking about what I was doing, and found I got a lot less soup in my lungs that way. I’ve gotten very good at swallowing, but only because I was lucky enough to have a health care professional who worked with me to meet that challenge.
I still can’t talk and eat at the same time...which should make my mother happy. How many times did I hear “don’t talk with your mouth full!” at the table when I was a kid? Little did I know what good advice that was!
...and there's something else:
You may feel sad, angry, or frustrated.
I remember once having a tough day, vocally, at work. No matter how hard I tried, I couldn't muster much more than a strained whisper. A co-worker raised her eyebrow and said, "Hmn... is your voice a little lazy today?" I didn't respond to her comment, but I couldn't help thinking: would she have made the same kind of remark to someone struggling along on crutches? In a wheelchair? I doubt it.
Having a vocal disorder in a world full of people effortlessly talking, singing, and shouting can feel lonely. Your job may be much more difficult, or even impossible, to do without a healthy voice. Not being able to sing in the choir, socialize at a party, or even order food in a busy deli can be frustrating. A person's voice is linked to emotion and personality. Losing it can be heartbreaking.
The day I finally understood the reality of my condition, I cried for hours. One friend who was able to recover from her paralysis is now being treated for post-traumatic stress syndrome: her experience had a powerful effect on her emotional health. If you're feeling sad, or even depressed, there's every reason to seek help. Mention it to your doctor. Ask questions about dealing with stress and loss. And remember, you're not being "lazy". You're working hard to adjust to a real disability, and sometimes it takes more than a sunny smile to get through the day. Seek help when you need it.
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