Nerve Deafness

I originally wrote this post in my "Book Blog" (which I rarely write in anymore) on August 20, 2005 before my first cochlear implant surgery and thought it was worth repeating.

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

Three Year CI Anniversary

Three years ago today, the remnants of Hurricane Katrina blew through Knoxville, knocking out the power in our area. Three years ago Steve was trying to get home from a business trip to take me to the hospital for a life-changing surgery (he didn't make it - Marissa had to miss school that day and took me instead. Steve did make it in time to be there when I woke up in recovery.) Three years ago today I received my first cochlear implant in my left ear. These last three years have been an incredible discovery of new sounds and new joys. I know I've said this before but will say it again. . . I am forever grateful for those who made this technology possible to give the gift of sound to the deaf and hard of hearing.

Below is my most recent hearing test (click on test to view it bigger), which I had done a month ago at my last mapping appointment at the UT Audiology and Speech Pathology department. I tested NORMAL across the board with both cochlear implants, which is even better than the last hearing test I had done a year ago. (That is the C1 you see across the top of the test.) My audiologist also tested my residual hearing to see if I had any left because I told her that I can "hear" certain sounds at a certain range. (Those are the X's and O's you see near the side and bottom of the test.) Cochlear implants usually destroy what residual hearing is left but my doctor used the latest technology, which tries to preserve it. And sure enough, I do have a little bit left. But it is not really usable. It is nice to know that it is there and not just my imagination!

Julie also surprised me and wanted to test my word recognition (HINT=hearing in noise test) score. She used her own voice instead of using a recording and repeated sentences to me. She asked me to write them down and told me to write whatever I heard, even if it didn't make sense. My score was 63%, which is just a slight improvement from my score of 60% last September. But, she tested me BEFORE she remapped my processors. I think I would have done better AFTER the mapping session and with a man's voice. But that is okay. 63% is better than 0%, which was my score three years ago. My score is higher (100%) when there is no noise around me, which is why I prefer to talk on the phone in a quiet place with no distractions.

Tonight is the annual fireworks display in Knoxville for the Boomsday festival. I'm hoping to go see and HEAR them with TWO ears! Have a great Labor Day!