Deafinitely Thriving

Explaining the Terminology

Often times, I will say something in reference to my deafness, like “oh, my batteries are dead” or “my processors are a pain in the ass when I try to put my hair up”. But, people will react with sheer confusion, just as you probably are as you read this. You might be thinking the terminology I use is complicated or complex. It really isn’t. In fact, it is very simple. Once I explain how everything works, you will be an expert in understanding what I, and perhaps many other cochlear implant or hearing aid users, say in reference to their hearing devices.

I will start with explaining what hearing aids are, since they were the first devices I used shortly after I was diagnosed with a profound hearing loss. Having only some residual hearing in my right ear, audiologists recommended that I get two hearing aids, yes two even though I had no hearing in my left ear. By definition, a hearing aid is “a small device that fits in or on the ear, worn by a partially deaf person to amplify sound”. I received some benefit from wearing a hearing aid only in my right ear. As for the left ear, with no hearing, I got nothing, nada, zip. The only sounds I would get in my left ear were tactile, meaning I could only feel the sounds just as you would if you were up close to a speaker. Within weeks, I stopped wearing a hearing aid on the left ear because it rendered useless for me.

Until April 2000, I wore a hearing aid in my right ear. During the four-year span between my diagnosis and my first Cochlear Implant surgery, I enrolled in auditory verbal therapy. Having some hearing with one hearing aid allowed me to learn how to speak, and begin to identify sounds, such as my parents’ voices, my speech therapist’s dog barking, the dishes in the kitchen clinking, etc.

For a while, audiologists had told my parents that a much better, more advanced piece of technology would be more suitable for someone like me with a profound hearing loss: Cochlear Implants. By definition, cochlear implants are “a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly or severely hard-of-hearing”. In layman’s terms, this device would give me a lot more hearing that a hearing aid could ever provide. You might be thinking, “This sounds fantastic, why didn’t she get it when she was younger than four?”

Well, there was a catch.

In order for a cochlear implant to successfully work, I would have to get surgery to place the internal portion (the receiver/stimulator and the electrode array) of a cochlear implant under the flap of my skin behind my right ear. In the process of getting surgery, I would lose ALL of my residual hearing in my right ear. To add to the complexity of the situation, I don’t even have any cochleae! I simply have two common cavities, since my cochleae never developed. For those you unaware of what a cochlea is, it is “the spiral cavity of the inner ear containing the organ of Corti, which produces nerve impulses in response to sound vibrations”. In other words, the cochlea is filled with hair cells that transmit the sounds to the brain and helps hearing people hear. Only my right ear was a candidate for a cochlear implant since there was measurable hearing to test for any possible nerve fibers that the cochlear implant might stimulate. My left ear had none. Nevertheless, getting the surgery was a huge risk. I was facing an all or nothing situation. One: I would get some hearing with the cochlear implant. Or two: the cochlear implant surgery would completely fail and I would end up with no hearing at all.

For a few years, my parents did not want me to have the surgery. They were afraid it might never work and did not want to put me in a situation where I would be getting no hearing or benefit from any possible hearing device. Who can blame them? Would you want your child to never hear again if they had some hearing in the first place?

Despite their fears, my parents actively searched for doctors and asked for their opinions about me possibly getting a cochlear implant surgery. Of course, they faced adamant, negative opinions by some doctors. Those at Boston Children’s Hospital absolutely refused to perform my surgery. They thought that without cochleae, the surgery would never work. They repeatedly told my parents it would be impossible for me to hear with a cochlear implant. As the name implies, the cochlear implant does usually require a cochlea to hold the electrode array, which is the wire portion of the implant.

My parents, of course, didn’t give up there. They found another doctor, Dr. Noel Cohen, at NYU Medical Center who was more than willing to perform my surgery. He was one of the rare doctors who specialized in cochlear implant surgeries for patients with common cavities. (He has since retired.)

Taking the word of one of the most respected Otolaryngologists in the country, my parents decided to go ahead and schedule my first cochlear implant surgery. On April 20^th, 2000, a week before my 5^th birthday, I went to the operating table.

In a strange, ironic twist, the surgery worked.

Two weeks after Dr. Cohen successfully inserted the CI electrode array into my common cavity, I went to see an audiologist to get my implant “activated” for the first time. This was the moment that counted. The moment that would reveal whether this surgery would be in the “all” or “nothing” side. Yes, the surgery was successful, but would the implant produce sound?

When the audiologist activated my implant and turned on my processor, my mother in an anxious, and somewhat serious tone, said, “Alanna”. And I just turned my head to her. Her voice was, wow, so different sounding.

Everything suddenly seemed clearer, crisper, defined, and solid.

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The cochlear implant comes in two parts: the internal, which I have previously explained, and the external, which is the processor. The processor is the part everyone sees on my ears. People who have never heard of Cochlear Implants will often tell me I have funny looking earrings. I remember a soccer referee telling me many years ago to “take off your earrings”…hahaha no…I need that “earring” to hear. The processor, as you might hint from its name, actually processes all the sounds coming in from the internal port of the cochlear implant and transmits it to near comprehensible sounds. The internal portion of the CI actually contains a magnet, right underneath the flap of my skin. This magnet connects with my coil, which is a short extension of the processor. This coil is the “link” between the internal and external portions of a CI.

Additionally, I will sometimes share that “my batteries are dead”. What I mean to say is that my processor is no longer working, simply like a flashlight stops working when the battery dies. Another thing I will sometimes say, and probably should’t, is “my processors are a pain in the ass”. Even though this device gives me “hearing”, I usually mean that the coil sometimes gets in the way of me putting my hair up the way I want to. Sometimes, having a coil can be hard to put a ponytail or French braid up because you have to “tuck” the coil in your hair somewhere, where it can stick on your head for a long time without falling when you move your head.

Finally, I sometimes use the terms “processors” and “cochlear implants” interchangeably. By definition, they are two, distinct parts of a cochlear implant; the internal and external portions. I probably shouldn’t use the terms interchangeably, but it’s hard tell a person you just meet that those things behind your ears are “processors” when they don’t even know they what cochlear implants are.

Regardless of my super long and hopefully not TOO boring post, I hope I have provided at least SOME insight as to how cochlear implants and hearing aids work. If you have any, and I mean any, additional questions, please feel free to message me on Facebook, Twitter, or Email.

-Alanna