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Vertigo Test

My dad always offered some sage advice: “Things will rarely be as bad as we anticipate them to be.” This is very true as I can attest to going worst-case-scenario, even in the smallest of things. Nine times out of ten, my mountain could have remained a molehill.

After my second cochlear implant consult, which I did not blog about because it was fairly inconsequential, I opted for a vertigo test. This helps to gauge if you have balance problems in either one of your ears, because if you do, they opt to not implant that ear. Turns out, the test is the tenth circle of Hell.

19 years ago, I ended up in the ER with, according to the nurse, “One of the worst cases of vertigo I’ve ever seen.” Don’t you love being a medical outlier? It took me almost three months to fully recover. I’ve had tiny bouts here and there since then, but nothing too noteworthy until this past December when I woke with vertigo three days in a row. On the fourth day, I decided to try Doctor Carol Foster’s exercise to get rid of my vertigo, and thankfully, it worked. But I’m clearly susceptible.

When I’d met with a cochlear implant mentor a few weeks ago, she told me she’d never had vertigo but experienced it for 11 days post-surgery. ELEVEN.DAYS. Cue the shrieking violins. I was horrified. So I decided to forge ahead with the test.

Don’t consume caffeine for 24 hours. No food for 3 hours. Have someone drive you home. Okay, none of this was sitting well with me, especially the no caffeine part. I freely admit I’m a coffee addict and have no shame in my morning game. But I tried to heed my dad’s advice.

Test day arrives. At the clinic, the audiologist is very nice and sympathetic. She leads me to an all-white room with a monitor and a hospital bed, then tells me she is going to induce vertigo to get “an accurate reading.” Huh? I looked it up online, even watched a video. Nothing mentioned purposefully inducing vertigo, only that it might be a consequence of the test. Now I’m thinking of calling it off. But my husband encourages me, tells me it will help to make a more informed decision. I force back the eye daggers, because he’s my ride home, and I need him.

More instructions from the audiologist: my hearing aids need to come out because water will be poured into my ears. I will wear a heavy black mask and a light will shine in. When it does, I need to focus on it. The mask also has a camera that reads my pupils, which she’ll watch on the monitor. Since I will be both deaf and blind, she gives me some signals on my body that will tell me when to close my eyes, when to open them, when to relax. Yeah, right. I’ll be as relaxed as a cat getting a bath.

I lie back on the bed, safety rails up. Out come the aids and on goes the mask. This is slightly horrifying. But wait, it gets worse. So.Much.Worse. Cold water rushes into my right ear, the sound like a freight train stampeding past. Soon the vertigo comes. When I grab the rails in terror, the water stops. My eyes flick the darkness, trying to find some balance, trying to focus. Trying to stop the Hell. Er, dizziness. The light comes on, and I focus, focus, focus. This is a Sci-Fi film come to life. I’m goddamned Scully when the aliens abduct her. Finally, I’m given the signal to relax. Repeat with the other ear. Then twice more with each ear, this time with hot water.

45 minutes later, the test concludes. “That may have been one of the worst things I’ve ever experienced,” I say to the audiologist when the mask comes off. She says, “Really?” She’s actually incredulous. “Yes, really,” I say.

It was worse than I could have ever imagined, although vomiting would have topped it, I suppose. Fortunately, I was not dizzy after the test and could have driven myself home. My results showed good balance and my right ear is good to go. I’ll take that as a win. I have to. Because so far, everything else feels like a loss.

 

 

1st Consult

I’m back! Today was my first of several cochlear implant consults. Before I get to the nitty gritty of this post, I want to add that I may be atypical in that these anecdotes are not necessarily going to be cheery or uplifting. When I was searching for stories about cochlear implant candidates, most were positive albeit apprehensive. I am not excited to get an implant. In fact, I’m dreading it. I do not want one. Not in a house. Not with a mouse. Many people are excited at the prospect, and that’s great. Many people are also excited to get a Brazilian wax. Again, great. But not for me.

For me, a slew of too many things can go wrong. First and foremost, the surgery might not work. Because they destroy your cochlea in order to implant the device, there’s no turning back. Meaning, if the surgery doesn’t work, you’re now deaf in that ear. So instead of being marginally deaf, you are now REALLY DEAF. Yes, I’m yelling. Also, the surgery might work, but you have no idea how well. You may hear as well as you did with your hearing aids. You might get back 90% of your hearing or anything in between. This is a gamble, and I’m unconvinced the odds are ever in my favor.

Also, you need to be vaccinated to avoid pneumonia and meningitis. You know, things that can kill you. And finally, facial paralysis. While rare, it is a risk. I find all of these things terrifying. Are you beginning to see why my pessimism springs eternal?

Okay, back to today’s foray. I met with Dr. Rebecca Lewis at the House Ear Clinic where I’ve been going off and on for over a decade. Before my appointment, I drank several cups of coffee to put me in a good-ish mood, but I don’t think even a dozen Starbucks Venti Americanos could have done the trick. Dr. Lewis spoke softly, which immediately pissed me off, and I snapped, “Can you please speak up?” Not my finest moment. But I have to say that I’m tired of hearing professionals not speaking loud enough, or at least asking me if they need to boost their volume. Know your audience, people!

Fortunately, she was kind and understanding and offered to type instead. I told her I didn’t need that, only to speak up, which she did. And then I felt like a jerk because she was so incredibly nice and accommodating. She started with the questions: when I started noticing my hearing loss, when I got my first pair of hearing aids, how many pairs I’d had over the years. The more questions she asked, the more depressed I got.

Then on to the Dreaded Sound Booth From Hell (DSBFH), where you hear pre-recorded words like “boat” and “chum” and “phone,” and you have to repeat them back. Guess who failed miserably? I already knew I qualified for the implant, but they test you again to make sure you do indeed suck. I’m hearing one in four words, although that’s with no visual cues. I’m a lip reader extraordinaire, so my numbers go up significantly when I can see a person’s face. I come in handy if you’re watching sports– I can usually tell you what the players are saying. Not surprisingly, there’s a lot of swearing in sports.

After the DSBFH, we went back to Dr. Lewis’s office to discuss the numbers and to learn how the implant goes in. That’s when I lost it. Crying, sobbing, feeling sorry for myself. Had my wonderful husband not been there to console me, I may have crawled into the corner, complete with paper bag over my head. But I blew my nose with as much dignity as possible (not much, for the record) and powered through.

The good news, and lord knows I need any glimmer I can get my hands on, is that unlike in the past, the implant is so thin now, they can slip it behind your ear near the mastoid bone. No longer do they have to shave part of your skill to get it in. And because it’s wafer thin, no more bump. Both of these make me want to barf, btw, just thinking about them.

Next up is my consult in 2 weeks, meeting with the surgeon and learning more about the implant. I want to be that noble person you look up to and admire for their bravery and resilience. I’m not that. And to quote my own book, because hey, shameless promotion, “I have the courage of a flea. Courage is noble, fleas are not,” I do aspire to be a positive role model, though. Someday. But today is not that day.

 

My cochlear implant journey

This is going to be the first of many posts. I’ve decided to write about my cochlear implant journey, partly so I can help others who, like me, are always looking for answers and anecdotes, and partly for my own sanity, because this has been an emotional and somewhat gutting experience. To write it out, well, I’m hoping for some kind of catharsis. That maybe the Sword of Damocles will ease off. (I cuss a lot but will contain myself for these posts. For those with a sailor’s mouth and mind, imagine another word starting with “f” and ending in “k” in lieu of “ease.” For those who don’t cuss, disregard.) I’ll try to add some humor too. What’s tragedy without comedy, after all?

Some background: my hearing loss is bilateral sensorineural. My mom has the same loss, so does my sister. Mom wears hearing aids, although she’s a cochlear implant candidate, I’m sure. My sister has a cochlear implant in her left ear, and I wear hearing aids in both ears. We are all “late-deafened.”

I feel fortunate that until my early 30s, I had perfect hearing. I could hear leaves rustling, my first whispered “I love you,” and someone speaking to me from another room. Now, you can stand right in front of me, and depending on your tone, your volume, male/female/child, I might not hear you at all. Well, I’ll hear you, because I still hear sound with my hearing aids in, and even some without. But my speech discrimination is so poor in my right ear it’s like listening to Charlie Brown’s parents day in and day out.

I’ve prided myself on hanging on to my hearing. As recently as 5 months ago, I was doing okay. But then I noticed my right hearing aid was acting up. Indeed, it was broken. But when I got it back from being repaired, it didn’t seem that much better. My hearing had gone down. Way down. My doctor gave me prednisone which helped. But then I got sick and it wiped out what I had gained back. Another dose of prednisone helped again but gave me tinnitus in my left ear. It now sounds like a snake charmer is playing a clarinet in my ear canal.

The phone is nearly impossible without captions. Restaurants or coffee shops are my worst nightmare. Forget about hardwood floors and high ceilings. And I now realize that for years I’ve been living in a low-level state of constant fear and anxiety, never knowing if I’ll hear someone or not. I used to be the person with the snappy comeback. Now, it’s a victory if I hear the joke at all.

More background: I swore I would never get a cochlear implant. The main reason being, when I used a device called the Pocketalker, I had near-perfect hearing again. It was so incredible I found a doctor who agreed to test me. My speech discrimination jumped from 0% unaided to 95%. It was astounding, and I went in search of a similar device that would be wireless. I was excited, hopeful, even cocky. See, doctors? I have found a way to hear without you drilling into my skull. Ha!

There is something about the FM frequency that works startling well for severe-profound hearing loss. But when I told doctors this, they shrugged. And as of right now, there is no such wireless device. Bluetooth does not share that frequency, or what I term “magical unicorn frequency.” The doctor who tested me said he thought this was a fleeting moment because my hearing would continue to deteriorate, and to some degree, he was right. I still hear amazingly well with the left ear using the Pocketalker. The right ear needs a bump in volume, and it’s still pretty distant and tinny.

So now I’m faced with the inevitable, and I’ve decided to move forward, although I’m completely terrified. I have tinnitus and suffer from brief bouts of vertigo, both which can worsen with an implant. And if you think hearing aids look dreadful, the implant is worse. Luckily, I have been blessed with a head of hair that makes many a grown man cry. So in six weeks, I’ll go to my first of two consults along with getting an MRI.

My sci-fi-loving husband promised me bots are sexy. I hope so. But what I really hope is that I’ll hear well again in my right ear. That the fear and anxiety will diminish or disappear altogether. And that instead of saying, “What?” all the time, I’ll once again have a snappy comeback.