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!

Can You Read My Lips?

The above picture needs a little explanation. (Smile!) My husband and I are currently in Los Cabos, Mexico for a much needed vacation, our first in four years.! Traveling to different country poses some challenges with the different languages when one only speaks English. Here in Mexico, the natives speak Spanish as well as some basic English words. For someone like me, who is fluent in “speech reading,” it is hard to read lips when English is a second language because the natives don't move their lips to form their words in English. Steve understands when I cannot and is very good about translating for me. I’m thankful that I do not have to travel alone!

But, this week was a challenge when we decided to take the Cactus ATV tour in Cabo San Lucas, BCS, Mexico. Before we started the three-hour tour, we were all outfitted with bandanas that covered our noses and mouths, goggles, helmets, and Honda ATV’s! Everyone’s faces were completely covered, including our guide’s, to keep the sand and dust from getting in. I could not even attempt to try to understand our guide’s muffled broken English with the Mexican accent but was able to manage just by watching him and the others. Luckily, I had a 350cc automatic Honda All-Terrain vehicle and it was pretty easy to figure out and drive.

We had fun driving through the desert, mountains, canyons, and streams. We enjoyed the beautiful scenery, especially when we got to Migrino Beach. The huge waves in the Pacific Ocean were just beautiful as we rode along three miles of the spectacular dunes, cliffs, and white sandy beaches.

View from my ATV

I took it all in and just rode my ATV, with the wind blowing in my face. My very favorite sound is the sound of the ocean as the water ebbs and flows along the beach & rocks.

Migrino Beach & Pacific Ocean

Desert Sunset

More posts to come soon! Adios!

Veterans With Hearing Loss

Please check out this news article. . . this featured veteran is a member of my HLA of Knoxville Chapter and is a wonderful young man. Mark Brogan is helping HLAA reach out to veterans nationwide who have lost their hearing as a result of their military service.

HLAA is offering a Complimentary Membership in HLAA for Vets of OIF and OEF and a free HLAA Convention 2009 Registration to Nashville. Mark and I have been working with HLAA on this project. For more information, go to the Hearing Loss Association of America website and click on the flag on the right side.

I'm so proud of Mark and he will be a great advocate!

A New CI Friend

I continue to advocate and support others with hearing loss on a weekly basis and would like to introduce you to Becky! She emailed me a few weeks ago asking for advice on going bilateral since she already has a cochlear implant. To make a long story short, I met her in person last Wednesday night at a CI Support Group meeting and found her to be a delightful person, as well as her husband. And we connected right away. There is something about having an "immediate" connection with someone who has a hearing loss and knows what it is like. Becky's hearing journey and history is very similar to mine (diagnosed early, wore hearing aids all/most of our lives, mainstreamed in the hearing world, etc.) I encouraged her to start a blog about her journey so she can tell her story. . . .

Go HERE and give her some encouragement and support! (I also added her to my sidebar on the right)

President Obama's Name Sign

Just in! A student at Gallaudet University has given President Obama his name sign and posted a video on YouTube! I'm not sure how authentic it is but it looks great to me. It is subtitled for the deaf & hard of hearing.

Click HERE to watch!

Jackson Update!

Jackson with his Tennessee grandparents!

Here are a few pictures from the holidays! Steve and I flew to Texas to be with our grandson, Jackson, and his mommy & daddy. He is growing so fast and we miss him already. I loved hearing him "talk" and make his noises. He also "slaps" the hardwood floor in the house as he does his "Army crawl" and it is easy to know where he is. I even heard him cry after his nap behind a closed door! And he always smiles when we open the door to get him!

Jackson at 9 months

The Three J'sJackson standing next to his cribDoing the "Army Crawl!"

UT Department of Audiology & Speech Department Saved!

When the University of Tennessee announced the pending closure of the Department of Audiology & Speech this past June, I went right to work advocating for the group for several months. There were parallel efforts by many other people in the community and nationwide to help save this nationally recognized program. Much time was spent on my part for several months in 2008 getting several state politicians to weigh in, writing newspaper articles, and a huge letter/email writing campaign. I also worked with Larry Silverstein, whose father was responsible for starting the program 55 years ago. The result was a reversal of the decision by the UT Board of Trustees. One should never underestimate the power of the people, the media & the written word, and grass roots advocacy! Below is an article written by Mr. Silverstien that was in the Knoxville News Sentinel several weeks ago thanking everyone involved for helping to save the department. There are still some challenges ahead for the Department of Audiology & Speech but it is good to know that the reversal of this decision will have a huge impact for thousands of children, adults, and students forever.

Thanks expressed for helping save UT unit

By Larry Silverstein
Sunday, December 14, 2008

On behalf of the thousands of children and adults whose access to essential speech and hearing services has now been preserved, and the UT students who will become professionally trained therapists, I offer thanks to all who played an important role in making this happen.

The Friends of the University of Tennessee-Knoxville Department of Audiology and Speech Pathology are very pleased that the UT Board of Trustees has approved a proposal for a transition plan towards a July 1, 2009, administrative takeover of the department by the UT Health Science Center in Memphis.

This will keep intact the nationally recognized department and its entire clinical program, and it comes four and a half months after a hasty and ill-advised proposal by the UT administration to eliminate it.

The proposal, contemplated to help reduce the UT budget, was initiated by the dean of the College of Arts and Sciences and approved by the acting chancellor, acting provost and President John Petersen. This unexpected action was taken without consultation with the department, the UT Faculty Senate or anyone in the community.

The announcement was made public on June 4, just prior to the Board of Trustees Executive Committee meeting in Nashville on June 6 and on a fast track toward approval by the full UT Board of Trustees on June 20.

Thanks to the unanimous support of the local media, word spread quickly throughout the community and a grass-roots campaign was begun to save the program. Letters, phone calls, personal appeals and e-mails by the hundreds poured in to the board of trustees, Petersen and Gov. Phil Bredesen.

A law office conference room in Nashville on June 6 was filled with UT students, faculty and other concerned people who took their case directly to the board of trustees. A large rally of supporters was held at the Scottish Rite Temple on June 9.

On June 11, UT announced that some aspects of the clinical program would be retained, due to the provisions of a 99-year lease agreement from 1958 that required the Hearing and Speech Center be operated by the university.

The administration did not indicate which clinical programs would continue and planned to entirely phase out over a two-year period the department and all teaching, training and research functions. This amended proposal was not acceptable and resulted in a campus protest march on June 13.

Under considerable pressure from the community and the UT Faculty Senate, on June 17, the administration announced that its proposal would be deferred until the Oct. 24 board meeting. This was viewed as only a temporary reprieve, based on statements made at the June 20 board meeting.

After members of the board received well over 1,000 contacts by individuals and professional organizations from all over the country, the administration made an alternative proposal to transfer administration and funding from the UT College of Arts and Sciences to the UT Health Science Center in Memphis.

We owe our sincere gratitude to the incredible community support that made this resolution possible. Because of the 55-year history of excellent service to the East Tennessee community, many people - including students, faculty, clients, alumni, local and state public officials, civic organizations, and members of the audiology and speech pathology profession - came forward to share their personal experiences and grave concerns with the UT administration and board, Bredesen and members of the Tennessee Legislature.

Those voices of concern and outrage were given great support and publicity by the Knoxville media, particularly by the News Sentinel, which reported each and every event, and were heard loud and clear by the board and administration.

Our campaign has demonstrated the media can educate and motivate the public to successfully challenge policies that would have a negative impact on our community.

We are grateful that East Tennesseeans will continue to receive the essential speech and hearing services that they need and deserve and that UT will continue to train and educate the next generation of professionals who will provide these services.

Thanks to the enthusiastic support of the UT Health Science Center, the board of trustees, the local print and television media and all in the community whose support helped make this a reality.

Larry Silverstein, an attorney, is the son of the late Dr. Bernie Silverstein, the founding director of the Hearing and Speech Center in 1953 and a UT professor until l996. His e-mail address is Larrys55@aol.com.

(Laurie's Note: Copied with permission from Larry Silverstein)