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HearAgainPosted by charv on November 19, 2005 - 2:04 PM A journey from hearing loss…. Some background … From the time I can consciously remember I have always known that hearing loss was going to be a dominate part of my life. My grandmother was totally deaf from her early teenage years. My mother began wearing a hearing aid before I was born, so I’ve never known her as a hearing adult. She told me recently that she even considered not having children because she was afraid the condition was hereditary. She visited a hearing ‘specialist’ in Atlanta who assured her she couldn’t pass it along to her children. Ah well. As it turns out two of her four children ‘got it’. Me and my younger brother. I am grateful for that specialist though. If not for her I wouldn’t be writing these words and you would never have had the chance to read my story. I guess I should start at the beginning… I can remember as a child, spending the night with my grandmother, waking up in the early morning in her big double, feather bed and hearing her calling me much too loudly, "You’re going to be late for school!" On bright sunny mornings (or morning I just slept late) I liked to pull the homemade quilt over my head and squint my eyes. If I turned my head back and forth, just so, I could make my own kaleidoscope from the bright colors of the quilt. On cold mornings I would invariable smell oatmeal cooking on the stove and hear the scrape of a knife spreading fresh butter on a piece of toasted bread. I felt so loved. But even as a child I was conscious of how much she missed. She never heard her husband say "I love You" or “Will you be my wife?â€. She didn’t hear the organ play the Wedding march or Granddaddy saying “I do†on their wedding day. She never once heard her newborn children cry. She couldn’t hear a knock on the door or a friend calling her name from across the street, birds singing, the whisper of the wind or the squeak of the front porch swing. She never knew what her daughter’s or her son’s voices sounded like. Or for that matter any of her grandchildren’s. She didn’t use sign language and it’s strange that I never remember her not understanding anything I said to her. I remember once as a newly licensed teenager, I took her shopping and while we walked up and down the aisles we got separated. Before I knew what was happening I heard my name being called. And so did everyone else in the store. She had no concept of how loud or soft she was talking. She couldn’t even hear her own voice. And to my everlasting shame, I remember being embarrassed. She never let her hearing loss hold her back though. My mother told me that before she was born, Grandmama and Granddaddy would go dancing two or three times a week. She cut a pretty good figure on the dance floor to. She could feel the music and pick up the beat that way. Mama was born in 1923. I used to try and try to imagine my Grandmother doing the ‘Charleston’ and usually ended up laughing and saying “No way Grandma!†She was active in her Church and sat front and center every Sunday and she would sing her version of the songs listed in the program at the appropriate time. She was at every Ladies’ Social the church had. Wednesday night prayer service … she was there. She could drive the stick shift by feeling the strain of the car when it was time to change gears. She was the most wonderful grandmother anyone could ever possible want. And I’m so glad she was mine. By the time I was in grade school, my friends couldn’t count on my hearing them whisper in my ears. By the time I was in high school I started sitting in the front of the class so I could hear the teachers better. After marriage and the birth of my second child I could no longer pretend that I was getting by. There are all kinds of ways to pretend. Someone says something to you and you smile and nod your head. Or you say, “Sorry, I don’t mean to change the conversation but have you …,†(this one will keep you from making a complete fool of yourself by saying something completely unrelated to what was being said). You wave at friends in the grocery store and say “I am soooo late. Can we talk later?†When every other tactic fails and you respond to what you ‘think’ you heard somebody say and you get this blank look from them … you laugh to cover up the mistake. But you make a mental note to avoid that person for a while and hope they forget the dumb thing you said. With progressive hearing loss by the time you reach this point you are already well on the way to isolating yourself from not only the outside world but many times your family as well. You don’t accept party invitations or go to the mall with girlfriends. You don’t answer the phone, preferring to let the caller leave a message so you can play it over and over until you finally understand it. If you are required to attend a meeting you pretend to be taking notes but you never offer an opinion. You don’t ask questions because maybe, just maybe the person before you asked what you wanted to know but you didn’t hear the answer. If you ask it again everybody will know you didn’t hear it and you think some of them will say to themselves. ‘God. We just answered that one.’ On the upside you become very observant. You can read moods and expressions from across the room. You intuitively know when something is bothering someone. Body language speaks volumes. You know when your children are doing something they shouldn’t or when they don’t feel well. You can watch your husband walk up the driveway and know whether he’s had a good day or a bad one. You can see the sad little faces of children whose parents are ignoring them in restaurants. The sparkle in her eyes and the smile on her face speak of a young bride’s love for her new husband as eloquently as her words might. Continued on HearAgain Part 2. Submitted by gjjohn on November 21, 2005 - 1:32 PM.
I can certainly relate to your experiences with hearing - or should I say not hearing. About 8 years ago I lost total hearing in my left ear and my right ear now seems to be wearing out, maybe from trying to over compensate for the other. My father wears two hearing aids and my older sister wears them as well. However, the doctor tells me this condition is not hereditary. According to my dad's doctor his hearing loss is from fighting in the Korean and Vietnam wars. My sister doesn't know why she is loosing her hearing. When I lost my hearing in my left ear, the doctor says it was a freak viral attack. I personally feel the doctors are wrong and that our hearing conditions are hereditary. Submitted by charv on November 21, 2005 - 1:41 PM.
gjjohn There have been so many advances in hearing technology. My story has a happy ending and we're exploring the possibility for extended gene mapping to further investigate how and why this sometimes happens. Complicated stuff since my family is extended from California to Georgia. And that's just the first cousins. Did you know they (audiology researchers) say there could possible be a totally implantable hearing aid in the next 3-4 years? There is so much to write and tell... thank you for your comments. Submitted by charv on November 21, 2005 - 2:39 PM.
gjjohn, As recently as 4 months ago I was tested and classified in the profoundly deaf category. I have been at that point for almost 10 years (Although I've worn 'hearing aids' for 30. My audiogram results were at the very bottom of the chart. Without my hearing aids I was totally deaf. There were even several sound ranges that were all the way off the chart meaning that even with the most powerful hearing aid amplification I couldn't hear them.... With my new Cochlear Implant ... As hard as this may be for you to believe I can now hear in the upper levels of what is categorized as being in 'normal' range. My understanding isn't that high yet but I'm seeing improvements EVERY day. (And this is what my blog is ultimaly about) My surgeon assures me the new totally implantable hearing devices will be just as effective. I guess I mis-spoke. We're not really talking about hearing aids now. The new technology is so much more advanced. That's is just the term most commonly used. Hmmm. Did I answer your question? Yes. The new implantable devices will enable the profoundly deaf individual to hear again. Submitted by gjjohn on November 21, 2005 - 3:19 PM.
Is there information on the Internet about this procedure - what it involve and cost? I have always heard that performing any type of procedure on the inner ear is close to brain surgery. Is there any truth to that? Is it that complicated and risky? Submitted by charv on November 21, 2005 - 3:32 PM.
Tons of it. Here's a start ... http://www.entcolumbia.org/cochimp.htm http://www.deafblind.com/cochlear.html http://www.cochlearamericas.com/Experience/ If you are accepted into a cochlear implant program your insurance company should cover most of the cost but I'm sure that varies by coverage. I was in the OR and Recovery rooms at MUSC in Charleston maybe a total of 4-5 hours. Stayed overnight at a hotel and returned home the next day. Submitted by curly123053 on November 22, 2005 - 1:55 PM.
I have truly enjoyed reading these comments because in a lot of ways it was like reading about myself. I was born deaf in my right ear due to being born breach at home with the cord wrapped around my neck. Fortunately back then doctors did things called house calls that don't happen anymore. The doctor came in and removed the cord and I had suffered a "loss of oxygen" which killed the auditory nerve to my right ear, but I was actually lucky to be alive. It was not until I was in the 2nd grade that the teacher noticed something was not right and informed my parents. Well, this year in September my hearing in my left ear(good ear) suddenly got very bad due to intense ringing in my ears. I have been to specialists and been through at least a half dozen hearing tests. It is called "tinnitus", but the noise I hear is not ringing but more like machinery running 24 hrs a day 7 days a week. I compare it to being in a factory with the machines running all the time nonstop. I have what I call as the "good ear days" where the "noise" is moderate enough to be able to hear "somewhat" with my hearing aids to my "bad ear days" where hearing aids do not help at all. On my bad ear days I cannot understand the music or chatter on the radio or understand what is being said on the TV without enabling the captioning. I seem to be having more bad ear days now than good ear days. Submitted by charv on November 22, 2005 - 2:26 PM.
PLEASE. PLEASE. PLEASE. Have your doctor refer you to a Cochlear Implant program, be evaluated and let them submit a claim to your insurance company. I thought the same thing. Turned out I was very wrong. You might be too! I did have some out-of-pocket expense - but hey - I can take that up with Uncle Sam on my tax return this year. I can give you the referral contact information at the hospital in Charleston where I am a patient. Please give it a go! If your doctor cares about you at all he should be glad to submit the referral. Remember ... you have nothing to lose and everything to gain. I will be updating my blog tomorrow. There is so much good news to share! Submitted by curly123053 on November 23, 2005 - 10:21 AM.
Thank you for your encouragement. I have been going to a specialist at MCG who has been great. But, since I am a resident of Aiken County who is on the state insurance plan as a state employee I had wondered if my insurance would take me further if I went to MUSC since it is a state government hospital. State employee insurance can be a little more stingy than other insurance programs, but it seems it could help to have cochlear implanted in an instate hospital instead of an out of state hospital. Submitted by charv on November 23, 2005 - 12:37 PM.
If you read my next blog you will see that we went to MUSC because at the time MCG did not have the funding for a Cochlear Implant Program. Perhaps that's changed now but in any event I can certainly vouch for the professionalism and success of the MUSC program. Good luck to you with your recovery. Seems like when it rains it pours doesn't it? You will be in my thought and prayers. Just so you know the variety of patients that are eligible for the implant surgery. The oldest patient in the MUSC program is in his 90's. and just a few months ago I heard there were twin girls, less than 18 months old, who had the surgery in California. All are doing well. |
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