Deafinitely Thriving

Getting Implanted on the Left Ear and Re-Implanted on the Right

In 2002, my left ear suddenly became a candidate for a Cochlear Implant. For many years, my left ear was useless, just complete silence in that ear. During an appointment at NYU Medical Center in New York City, my audiologist discovered that some measurable hearing in my left ear had developed! Great news! This means that some of the hair cells in my common cavity had begun to work, so the auditory nerve must be present and working. Some miracle huh?

Only I didn’t want to get the 2nd implant because I would have to get surgery again. I already had bad memories about the first. I started thinking about my time in the hospital, remembering one moment where I woke up from a nap and my parents weren’t there. As a young, petite four-year old who could not hear a thing, I started panicking. Crying. Screaming. A short moment later, a blonde-haired nurse came running in and basically told me to quiet down as I was disturbing the patient on the other side of the curtain. Needless to say, I did not like her. Luckily, my parents came in nearly two minutes later. As it turns out, they were in the cafeteria for a much needed and much deserved meal after waiting for four, long hours while I was in surgery.

I also remember vomiting a few times. It wasn’t fun. UGH.

I didn’t want to go through the surgery again. I didn’t want to panic again. I didn’t want to vomit again.

My mom tried weighing the negatives with positives, convincing me that with two cochlear implants, I would be able to tell which direction sound is coming from. The thought of being able to do so amused me, but it still wasn’t enough. I still didn’t want to have surgery. And really, my parents were not all that excited about me having surgery again either.

Unfortunately, surgery became inevitable.

In October 2004, my family took a trip to the mall to get family photos taken. As we were leaving the studio, my right ear, my only good ear, started zinging with pain. It was as if someone kept poking my eardrum over and over again. As I winced in pain, my mom immediately grew concerned. “What’s wrong Alanna?” “Nothing, just my ear is hurting a lot.” The pain would subside within minutes, but I had never felt anything like it. When I got home, my mom gave me Tylenol, thinking the pain came from a possible ear infection.

Unfortunately, this would be the first of many zings to come.

Over the next two months, I began having more and more bouts of zinging pain. At home, school, soccer practice, wherever I was, the pain showed up.

A few weeks later, my mom took me to see my audiologist, Toni, to figure out what was causing my pain. Was my processor broken? Was the problem the programming of my processor? What was the damn problem causing me pain?

Nevertheless, we arrived at NECHEAR in Connecticut, where Toni worked. For a few hours, we worked on trying to figure out the right program for me. Which sound level would I hear best at? But in the process, Toni, along with my speech therapist, Diane, discovered that my hearing was getting worse. I was missing sounds, misunderstanding words, and the pain was only making matters worse. Regardless, she programmed my processor to a sound level that was both comfortable and suitable for me to hear most sounds. Unfortunately, the pain continued.

I remember one very specific incident. Coming home from speech one night, I was watching the Princess Diaries II on my portable DVD Player when all of a sudden, a sharp pain hit my right ear and went down my jaw line. Desperately hoping the pain was coming from the DVD, I quickly turned the volume way down. But the problem wasn’t the volume, and the pain only grew. I started crying, holding the face of my palm against my right ear. Soon, I was screaming. The pain was becoming unbearable. Luckily, we were close to Milford Regional Hospital and my mom immediately brought me into the ER. Like my other bouts of my pain, this one eventually subsided. A nurse brought me into one of the hospital rooms, and a doctor came in where he checked both of my ears. He couldn’t see anything. No redness, no scratches, no infection in the middle ear, no nothing. Knowing that I had two cochlear implants, he left to make a phone call to my CI surgeon, Dr. Cohen at NYU.

Lying in the hospital bed, I exhaustedly asked my mom “Will the pain ever go away”. As the optimistic mother she is, my mom responded, “I hope so. We are trying to fix this.”

A few short moments later, the nurse came in with Tylenol for my pain, and told my mom that the doctor had spoken with Dr. Cohen. He decided to put me on antibiotics because he thought I had some sort of inner ear infection. After I took the medication, I went home. Luckily for me, I got to skip school the next day. I had had enough pain for one day.

Unfortunately that pain returned. The pain kept showing up periodically. I had taken Tylenol, been put on antibiotics, and even iced my ear. Nothing was working. At that point, ear infection was ruled out.

My mom and I went back to NECHEAR to meet with Toni to try reprogramming my processors. Maybe the sound levels were all messed up. Who knows? We certainly didn’t know what was going on. Thus, we tried another reprogramming session. She tested different frequency and comfort levels. Nothing was working, but we did find that my hearing was progressively getting worse. I would be getting sounds, but would be unable to understand them. My level of sound comprehension was growing to be severe. It wasn’t my typical, occasional misunderstanding of words; I was missing out A LOT. Unsure of the problem, Toni decided to call Cochlear Americas, where cochlear implants are manufactured, and see if they can help figure out the problem. Maybe my processor was severely malfunctioning, and causing me pain?

The pain started showing up more often, attacking the inner part of my ear.

A few days later, a representative arrived at my house. I walked into my kitchen, and sat in one of the chairs as she checked for any cracks or wire problems in my processor. None were to be found. She decided to have me try on a different processor, a loaner one from the company. I also tried on a different coil. Nothing made a difference. My hearing was the same. The pain was still there.

The representative finally concluded that the issue was internal failure. My cochlear implant was failing. This meant I would need surgery…soon.

On December 21st, 2004, I had my second operation. I was re-implanted on the right ear, and received a new Cochlear Implant on the left. My parents and I decided that since I was already getting surgery for my right, I might as well get the second implant for my left.

My surgery was fourteen hours long! It took the surgeon and his team this long because when they removed the failed implant the hole that they were going to pass the electrode array through closed up. Every time they tried another spot in my common cavity, it caused facial nerve stimulation. They were finally able to get an insertion where this would not happen.

After all that, the doctors weren’t even sure that the re-implantation of my right ear would work. I was facing the possibility that I may never hear again. Or at least, not nearly as close to the hearing I had before. The implantation of the left ear was only expected to give me a small amount of hearing.

Unlike my first surgery, I vividly remember waking up in the recovery room. As I opened my eyes, my body felt incredibly stiff. I tried stretching, but my head was sore. As I looked around, I saw this elderly, bigger woman in the next bed. It seemed that we were the only two patients in the recovery room.

As I looked around me, I suddenly saw my mom hovering over me, checking to see how I was doing. “Ugh, I’m so tired and I can’t move.” Considering I was on the operating table for fourteen long hours, this was understandable.

The next two days would be spent recovering in an actual hospital room, where I spent two restless nights. I spent the first night watching movies on my portable DVD player. The Princess Diaries and the Lizzie McGuire Movie were particular favorites of mine. Nurses and doctors came in at all hours; they were checking my blood pressure, temperature, and making sure everything was healing steadily.

Or at least I thought they were. They certainly forgot to mention the balance loss thing. Like everyone else, I had to go to the bathroom the following morning. Except when getting out of bed, I collapsed. Completely lost control of my legs and crashed on the floor. Unfortunately for my poor mother who was sleeping on a tiny, and I mean very tiny, chair next to my bed, I gave her a slight heart attack.

On the second night, I let decided to let my mom sleep in my hospital bed. Unfortunately for her, I was bored and kept using a hospital button to move the bed up and down. Soon, she was back in her tiny chair.

I spent the rest of the night staring at the clock. Midnight, 1am, 2am, 3am, 4am, 5am…6am, and my mom finally started waking up. I needed to talk to someone…I was so goddamn bored. I had watched and re-watched all of my movies. Around 8am, the doctors came in and took off my IV and bandages, then discharged me around 9am.

Now, it was time for that waiting game.

We were able to activate the implant in only 10 days versus the customary 2 to 3 week waiting period because my parents were so anxious to have my hearing back. I returned to NYU to meet with the audiologist there who would turn on my implant. Unfortunately, the implant activation did not work as we had hoped. I received no hearing in either ear despite the successful surgery. We headed home shortly after that appointment feeling extremely disappointed. The audiologists said that the lack of hearing could still be due to swelling from the surgery, so we should give it some time.

For the next week, my mom made me try on my processor to see if I would hear anything. Many attempts were made without success. I was feeling discouraged. My parents were feeling discouraged.

I was facing a life without sound. My parents were facing a life with a daughter who may never be able to hear her own parents’ voices again.

Then one day, as I was lying in my bed feeling tired and disappointed, my mom had me try on my processor again.

“Oh? I hear something…”

From that moment on, my hearing on the right only improved. My left ear even started to have sound soon after. The surgery and re-implantation had worked. Thank god.

Today, I wear two Cochlear Implants that seem to only improve with time and practice.

-Alanna