I'm Now Wired for Sound!

Things they don’t tell you about your Cochlear Implant surgery

I thought I knew what I was up against. I thought I’d done my research. I’m not one to Google “Actual footage of Cochlear Implant surgery” but I looked at some nice neat graphics and medical drawings. My surgeon walked me through my CT scan and showed me where she would drill into the mastoid bone to get to my inner ear, that she would remove my Baha magnet first, drill a “well” for my new implant to sit nice and cozy on my skull – I was set to go.

But I didn’t really think about how my poor unsuspecting body would react to all those medical power tools. I had an inkling what I’d been through when my husband removed my oh so chic ear bandages the day after surgery – wow, blood! And all the prong marks on my ear and face reminded me how they got to where they needed to go. I won’t elaborate, let’s just leave it at there was some spreading involved - my ear was swelled up and sticking out like a well-beloved Disney elephant.

Surprisingly the pain wasn’t too bad. I ended up taking only 4 prescription pain pills, the rest of the time just monster Motrins and regular Tylenol. For me, the main symptoms were vertigo, dizziness, and an overwhelming feeling of yuckiness. My whole head felt like the losing boxer in a four hour-long prize fight, even my right eye was thinking “what have you done to me, I’m not even on the bad side”. Putting in contact lenses felt like an invasion of my brain space. Brushing my teeth felt like I was brushing down my throat. Everything was out front and ready to be irritated with the slightest provocation. I even lost my sense of taste, or rather gained a most unappetizing metallic and numb sensation on my tongue on the surgery side. It still is bothering me, but once I figured out the worst offending foods (fruit and cold foods) and the best combatants of the metallic taste (super spicy foods like curry) it's been easier to deal with. This should go away within a few weeks or months. I certainly hope so, because I want fruit to taste good again. And water, it would nice if water tasted good again.

One symptom that threw us both for a loop was a brief period when I had hallucinations. I don’t know if it was from the pain meds or just the swelling. I looked down and saw our dog’s stuffed toy Purple Guy moving across the floor. “Ernst, Purple Guy must have a mouse or a bug in him because he’s moving across the floor.” My husband walked over, stared at me with giant eyes, and said maybe I’d better go lie down. He advised the same when I told him the plant on the kitchen table was rotating. And when I asked him if he had blood coming out of his eyes while we were eating dinner, well apparently that’s kind of a freaky thing for a man to hear his wife say. We won’t get into the voices I heard in my operated ear. Suffice it to say, that was all very creepy and scary and we were both glad that part of my healing journey only lasted half a day.

I think the worst day was the Sunday after my Thursday surgery. A sweet friend drove two hours to bring me flowers, so I came out on the porch to chat with her. I was still in my pajamas at noon, which for me screams “I’m feeling horrid!’ My friend has profound hearing loss in both ears, so her empathy for my situation is dialed in. As I sat there looking like a wild mess, holding my spinning head, trying to hear her through the mask she so kindly wore to protect me, I realized I was not exactly the poster child for making CI surgery look the least bit desirable. 

But after that day things started to get better. Much better. I wasn’t ready to dance a jig, but the realization that I would soon be able to hear that jig better gave me hope. I started back to sessions of my volunteer work on Zoom, I started walking around the pool, then the yard, and participating a bit more in life without holding my head as if it weighed more than my body. I couldn't lift anything over 10 pounds (not that I wanted to) or jar my head in any way (not that I wanted to) or engage in any house or yard work that involved bending down (not that I even came close to wanting to.) I got good at picking up things off the floor with my feet. The day I emptied the dishwasher I knew I was on my way to feeling well again. First load of clothes? Jessica's back!

Our bodies are amazing and want desperately to heal from the things we do to them, either intentionally or accidentally. We have trauma and we swell and bleed and bruise and the swelling hurts and makes us wonder who that is staring back from the bathroom mirror. But it’s all part of the process. Healing isn’t pretty but it happens. I am not and will never be the best person to ask how a surgery went. The operations themselves go great, I breeze through, my body loves anesthesia. But I don’t do well with incision pain and swelling, haven’t since I was a newborn who had kidney surgery. My mom said I would scream bloody murder when they changed my bandages. I don’t scream anymore, I just see Purple Guy moving across the floor. 

Anyway, it’s been three weeks tomorrow since I walked in that surgery center alone to get my Baha magnet explant and my Cochlear Implant. And tomorrow Ernst gets to come with me to my CI activation day. Almost all the pain is gone, I’m still dealing with some after effects of my ear drum being damaged during surgery, but for the most part I am healed. Tomorrow starts the really fun work, learning to retrain my brain to hear in a completely different way. My road to Single Sided Deafness has been a very long and twisting one, but I’m hoping this decision sets me on a new path. I’m a Cochlear Implant recipient! It's going to take a while for me to wrap my head around that.

Say what?

I want to hear from both ears, it’s as simple as that. We have two ears for a reason, and I want both of mine to get sound. And that’s why next week I’m having an “explant” of my Baha 5 magnet and Cochlear Implant (CI) surgery. It’s been a long journey, here are the highlights.

In my mid-twenties I began to have some strange sounds and fullness in my left ear, tinnitus or ringing and some odd swooshing sounds like a sprinkler. I was diagnosed with possible Meniere’s Disease.

Following these symptoms, the bouts of vertigo followed. It ran the gamut between feeling slightly sick to my stomach and having to hold my head really still  - to violent attacks that hit me like a bullet. I’ve been thrown to the ground from vertigo, literally. Once at work I was thrown off the toilet and on to the bathroom floor on all fours - a force to contend with that brought me to my knees in every way imaginable. The inner ear out of balance is not a friend to a normal life.

Many times, while lying on the floor, or in bed, or in the bathroom, or a combination of all three as the nausea hit, I would just wish I could lose my hearing in my left ear in exchange for a life without vertigo. Be careful what you wish for.

As the years went by and the vertigo got worse, my hearing tests showed damage. I was told I wouldn’t be a good candidate for a hearing aid, so I didn’t get one, and then inexplicably my hearing would improve for a time. But even that stopped happening and my hearing loss was affecting my life. My sweet Mom insisted I see her audiologist on a visit to Connecticut, she treated me to a hearing aid, and that was a life changer.

It was the little noises I appreciated the most. My hair moving against my left ear. The equal sound of both my feet hitting the floor. Leaves rustling, all the birds! It all goes away so gradually and when the sounds come back suddenly every single one is a gift to be treasured. My brain felt balanced again, like my left side was firing on all points again just with the addition of hearing sound clearly once more in my left ear.

As predicted, even in my non-typical case of Meniere’s, my hearing continued to deteriorate. A stronger transmitter on my hearing aid helped for a time, but once those little hairs in our ears are damaged, even the strongest hearing aids available cause sound distortion and word recognition is the first to be affected. I got super good at the Single Sided Deafness Dance, which has one cleverly positioning oneself to understand dialog, especially in a crowded room.

I have really great hearing in my right ear, even for, ahem, my age. Why can’t I just hear from that ear? I do, and I do amazingly well, but like a person who loses an eye loses depth perception, a person with SSD loses the ability to know where sound is coming from. I can hear that you’re calling me, but I can’t hear where you are and I can’t understand all you’re saying. For a person who loves people and talking and hearing stories and joking and laughing and give-and-take and puns and the nuances of language, this disability cuts to the core of what makes me tick. Parties exhaust me, work situations are difficult and something as simple as trying to find out where my husband is in our big yard becomes a shouting match of “But WHERE IS OVER HERE??? Over WHERE??”

First to remedy this I tried a CROS system that sends sound from one hearing aid to a hearing aid on my good ear. UGH, that was horrible. So, in the Spring of 2017 I had a Baha 5 device implanted. Currently I have a screw in my head attached to a magnet under the skin and I wear a device that attaches to the magnet and it sends vibration through my skull to my good ear and I can hear from my left side. Pretty cool. Except for that “where” part of it all. I still can’t tell where sound is coming from and my word recognition stinks and for something that falls off when people hug me and causes pain on the side of my head…yeah, I haven’t exactly been the poster child for the Baha 5 Attract device. 

My surgeon was aware of this situation and she contacted me last Fall about getting a Cochlear Implant. I wanted to wait until I was fully vaccinated to pursue it, and in March 2021 I had my first appointment with the audiologist. Lots of appointments and hoop-jumping-through followed. More hearing tests, a CT scan, a pneumonia vaccine, a vestibular vertigo test and even a Zoom meeting with a phycologist to make sure I was a good candidate. I passed all the tests I was supposed to pass and failed the ones I was supposed to fail, and apparently I am a great candidate for surgery. It’s next week.

My surgeon will remove my Baha magnet (the screw stays in my skull as a parting gift) and install the completely different and much more sophisticated CI hardware. I’ll still wear a device on the outside as before, but instead of hearing from the left, I will hear on the left, the CI sending information directly into my cochlea that will be picked up by my hearing nerve. The nerve in my dead ear will “hear” again. It won’t restore my hearing, but I will hear sounds from that side on that side while wearing the receiver. It may take months of training and lots of visits to the audiologist for mapping, but I’m a pretty determined person when it comes to hearing, so I think I’m up for it. 

That’s my story of how I got from a strange sensation of fullness in my left ear with some odd sounds some 35 years ago, to being considered profoundly deaf in that ear and now a week away from getting a Cochlear Implant. We can’t pick what goes wrong with our bodies, and in the big picture of things I got off pretty good so far. Losing hearing in one ear, along with the vertigo episodes for those many years, has been incredibly challenging. I’ve always tried to face it with humor and brightness on the outside, but there have been so many dark times, I can “Why me?” with the best of them. But now it’s time to say “Why not me?” for a chance at hearing again, albeit in a very roundabout way. If this is successful, and if we ever get out of this pandemic, be prepared for me at parties and large gatherings – I’ll be the one with the Bionic Ear ready to talk your ear off. 

A Real Shot in the Arm

It's not like I was unclear on the process of registering for a Covid-19 vaccine. I'd been to our county's site numerous times checking on the availability for the English learners we know. I knew it was a process, but I didn't know how time consuming or emotionally taxing it could be.

When my tier (tears?) of availability came up I was then thrust from observer to participant, and it got real. My husband's school district (a different county) opened up appointments for him and he made his appointment. My eligibility for our county was up in the air. I spent a chunk of frustrating time bouncing around the various means of getting an appointment - the pharmacy and the grocery store options were booked solid, the medical clinics were a bit of a maze to navigate. Friends began telling me what they were able to do, but I always seemed to be one step behind.

After one more morning of attempts, I said "Forget this, I'll get it when I get it" and I decided to put it out of my mind and concentrate on a morning of uninterrupted volunteer work. At noon I saw an email from my supervisor at my school district, with a link to make an appointment. I screamed with joy. Making that appointment, standing in front of my stove in the kitchen, my hands practically shaking as I scrolled through all the appointments that had already been taken, fearing I read the email too late, with my husband peering over my shoulder telling me to keep scrolling down. And then there they were, all the available time slots for a Saturday at one of my districts high schools. I picked a time, got the confirmation and took about 3 screenshots of it to be be sure. And then we danced with joy, we'd be vaccinated in the same week - Moderna for Ernst, Pfizer for me.

Getting that first shot was a glorious day, both weather-wise and joy-producing. When I pulled up to the event I realized what a huge undertaking this was, they vaccinated 2100 people that day. The line was long, but moved fast. I forgot they would be taking temperatures when we walked in and I had a sudden horrible feeling that I'd get kicked out, but no fears, I always run low. I was in! We snaked around, six feet apart, and then before I knew it I was seated and the vaccinators were so sweet and I had the shot while I took a selfie. I didn't even feel it, those have to be the thinnest needles ever.

We celebrated with champagne. It's not like anything I'd ever experienced, receiving a serum injected into my arm that has the ability to save me from a disease I'd never heard of 15 months earlier. I wasn't about to be reckless or maskless or foolish, but it felt like such a game changer. We did it, we did it, we got through it.

The second dose was not nearly as exciting, but we celebrated nonetheless. It was Pi Day, so of course we celebrated with all things round - some vegan personal pizzas, a raw apple tart and a tofu chocolate pie. I figured if I'm going to feel sick as a dog the next day I'd better enjoy my vaccine day to the full. And so I went to bed that night and waited to wake up sick. But I didn't, feel sick that is, I did wake up. Nothing but the slightest soreness in my arm, less than the first dose caused. No day spent in pajamas watching Netflix, no chills, no fever, no aches. I felt a bit left out and wondered what was up with my immune system. Then we found out that 10% of people didn't get a reaction. Welcome to the 10% Jessica, put your clothes on and get on with your day, there is pie to eat! 

A few days later my husband got his second. He didn't get a fever or chills either, but was hit with a curtain of fatigue that he said was just like jetlag. A day of dragging and then off to bed early and he woke up almost 100%. So we are done and done and on Sunday I'll be finished and next Wednesday for Ernst - both fully vaccinated. Then begins the slow transition back to what used to be normal life but that feels nothing like normal now. Having people over to the yard, grocery shopping in a real live store, picking out my own produce, Ernst back teaching in-person instruction, planning our first trip away on a (gasp) plane! Here we come Spring 2021, we are approaching you with baby steps. Very happy baby steps.