So, How Deaf Am I?

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.

This is me wearing a much older version of hearing aids, in which the external part on my ear attached to a body processor. The black straps I'm wearing had a pouch in my back to hold the processor.
This is me wearing a much older version of hearing aids, in which the hearing aid was attached to a body processor. The black straps around me held that body processor in a pouch on my back.
Dead asleep at the kitchen table, but hey, this photo gives a good visual of my hearing aid!
Dead asleep at the kitchen table, but hey, this photo gives a good visual of my hearing aid…
I wore a hearing aid very similar to this version until I was four years old.
I wore a hearing aid very similar to this version until I was four years old.

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 20th, 2000, a week before my 5th 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.

————————————————————————————————————–

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

This was taken shortly after my CI surgery. Hanging with my mom in the recovery room...
Hanging with my mom in the recovery room shortly after my surgery.
To visually understand how a cochlear implant works, this photo depicts the internal and external portions working together to create hearing for a CI user.
To visually understand how a cochlear implant works, this photo depicts the internal and external portions working together to create hearing for a CI user.
In this photo, a magnet allows a coil to stick to my head, while a processor sits on the outer part of my ear. This is entire device is the external portion of my Cochlear Implant.
In this photo, a magnet allows a coil to stick to my head, while a processor sits on the outer part of my ear. This is entire device is the external portion of my Cochlear Implant.

8 thoughts on “So, How Deaf Am I?

  1. Alanna-
    I’m finding your blog very interesting and educational. At the risk of sounding like I’m pandering (which I’m not), the blog opens the door for me to ask questions, instead of wondering whether “it’s a touchy subject” or “am I asking the right questions?”…you’ve opened my eyes to this exciting technology and I’m fascinated to hear about your experience. Thank you for doing that.
    So a couple of questions?
    How much does it weigh?
    Is there a lot of maintenance to keeping it working?
    Can you easily take it on/off (like at the beach (sand and water))?

    Mike

    Liked by 1 person

  2. Hi Mike!
    I’m so glad you’re asking questions! Both of my processors are very, very light. I would probably say about an ounce or two for each processor. Also, I have to change the batteries for the processors usually every other day. I can absolutely take them very easily. Since I can’t wear them (the processors) in the water, I take them off and put them in a ziploc bag. My processors are not waterproof, so I have to avoid getting them wet…I take them off when I go swimming, take a shower, etc.

    Hope this was helpful!
    Alanna

    Like

  3. Hi Alanna,

    Thanks! I enjoyed your post, very well written and nice to read considering that we are about to have our 5 year old son, Liam implanted with one CI on the right side (Jan. 9th, 2015). We have used bilateral hearing aids for Liam since 5 months of age and for all waking hours (Liam’s cochlea are both damaged), but now since his hearing loss has progressed from a mild/mod/severe to severe-profound (in both ears actually) we are having the right side done; the right is slightly worse. I must say I too am very nervous, as your folks were, as the audiologist on the CI team in St. John’s NL will make no guarantees that his hearing and or speech will improve.

    I pray we are doing right by Liam.

    Liam has had on going therapy in AVT and speech and we are always “working” to help him grow his vocabulary and contextual understand of the world. However his speech and language is still delayed (by about 2 years). Liam has no other issues and is very bright and happy.
    My question for you is: How was your speech prior to CI’s?
    I’d love to hear back from you and would love to hear any further information or advice you’d like to share.

    Happy New Year!
    Leanne Ryan

    Liked by 1 person

  4. Hi Leanne,

    Thank you for reading my post! (:

    I just asked my mom how my speech was prior to getting CI’s and she says that at times, my speech would be incomprehensible. She also mentioned that my language was delayed, at that time, by about 1 to 2 years.

    Advice: I would talk directly to Liam’s surgeon and ask if he has had any prior experience with performing surgery on patients with damaged cochleae, and if he/she has had any success in doing so. Personally, my surgeon, Dr. Cohen, was incredibly experienced in doing CI surgery on patients, especially little kids, who had damaged or no cochleae. Since he has retired, Dr. Roland at NYU medical center has become the primary surgeon for doing these type of surgeries. It would not hurt to ask for his opinion about Liam.

    I wish Liam that best of luck in surgery and genuinely hope the surgery is successful! If you have any other questions, please don’t hesitate to ask!

    Hope you had a wonderful New Year!!
    Alanna

    Like

  5. Thanks so much Alanna for your reply. The surgeon we are using is the only ENT on the island of NL that preforms CI’s. He has done many, many CI’s surgery’s on all ages of people whom qualified for them. This ENT was also referred to us by Liam’s 1st ENT in Ontario. I trust him and the CI team. I guess I have fear of the unknown and of the surgery itself. Reading your post and hearing about your experiences helps, thanks.

    All the best in 2015!

    Liked by 1 person

  6. Hi Leanne,

    I’m so glad Liam’s surgeon has done many other CI surgeries. Fear of the unknown and of the surgery can be difficult, but it will be much better in the long run, when Liam can hear your voice even better! I wish him and you the best of luck!! (:

    -Alanna

    Like

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