WU member since Oct. 2005. I enjoy reading, crafts, crosswords, puttering in the yard, old movies and hanging out with my friends on WU.
By: palmettobug53 , 9:40 PM GMT on June 18, 2013
Most of my friends here on WU know that I am hearing impaired. It is not very obvious, as hanging out online creates a level playing field for me. I'm not constantly asking folks to repeat themselves. The only time I even remember it is when someone posts videos. I can't hear the music or follow narration.
This is the story of my journey to date and the journey to come.
I was diagnosed with hearing loss in the second grade. My teacher was counting heads after recess and came up one short. She looked out the window and, there I was, blissfully swinging away on the swingset. I had my back turned to the playground and hadn't noticed that everyone had gone inside.
My teacher contacted my mother, told her what happened and asked, "Have you ever had her hearing tested?"
I doubt my mother had noticed, particularily. Young children are notorious for hearing what they want to hear and ignoring the rest. Like being called to come in the house, when they don't really want to.
I am lucky that my teacher was perceptive and didn't automatically assume I was a 'problem' child.
Mama took me in to see a otorhinolaryngologist and, sure enough, I had some mild hearing loss. Mostly high pitched sounds like whistles - and the recess bell. He suggested that the cause of my hearing loss was probably the fever I had with the measles around age 3. Red measles was known to sometimes cause damage to the hearing. ( I later learned that a family history of hearing issues could be genetic. I know now that is probably true, in my case.) He prescribed some vitamins. I didn't take those very long, as I couldn't stand the taste every time I burped. They made me burp a lot, too. UGH.
From that point on, I was always sitting on the front row, so that I could hear better. Thus, messing up all my teacher's alphabetical seating arrangements. I found that a bit embarrassing for a while.
In high school, someone suggested that my parents get me a hearing aid. I don't remember much about that except that I could not stand the noise and refused to wear it. Looking back, I now know that was normal and I'd have adjusted, if I had kept going. That noise tends to subside, as you get used to it.
I don't recall being fitted for it or having any counseling or follow up care. To the best of my recollection, it was simply handed to me by my parents and I was told, "Put it on."
I feel badly about that, now. Even back then, I'm sure it was expensive and my folks didn't have that much extra cash.
I went along for a number of years, with my hearing slowly getting a bit worse over time. I accepted wearing hearing aids in my 30's and they helped for a number of years. I still wear them but they don't do much for me now.
I have slowly lost the ability to use the phone, watch TV, go to the movies, listen to the radio. I can't hear music and that bothers me. I love music. My ability to be a participant in conversations dwindled. I relied more and more on lip reading. If it's too dark for me to see, I can't hear. That knocks out any dimly litted venue or sitting outside after dark and talking with the neighbors.
I struggle to function at work. I can't hear well enough to follow what's being said in staff meetings or even when being talked to one on one. I worry about missing something important.
I can't hear sirens or cars. Not being able to hear cars makes riding a bicycle risky, unless I load it up and take it to a park with bike trails. Too much trouble.
I look like an owl when walking outside, constantly looking around to be sure I'm safe. I would not be able to hear someone slamming on brakes, to avoid hitting me, when crossing streets. I have a fear of being turned into a grease spot in the middle of the road.
I'm surprised I haven't been picked up by the cops or security, when walking through parking lots.
I'm ducking and looking at cars, as I walk past. It looks for all the world like I'm casing them, looking for one e to break into. What I'm doing is looking for someone in the driver's seat, who may be getting ready to crank up and back out.
I can't hear birds or running water. Or the ocean.
I have compensated, to a point, with using a text telephone for the deaf, email, captioning on the TV and a bed shaker alarm clock. Asking people to write things down.
I love email! And I love chatting with my friends here on WU. You don't know how much your friendship and conversations mean to me.
But the time has come for a change.
I made an appointment with Audiology at MUSC to discuss my options.
I was told that they could fit me with another pair of aids, to the tune of $3,500.00, payable in full, up front. They probably wouldn't help that much and aids only last a few years before needing to be replaced.
My other option was.... (drum roll here, please) - taking the plunge and getting the cochlear implants.
I decided that, rather than coughing up $3,500.00 on aids that weren't likely to give me much benefit, I'd be better off applying that $3,500.00 to my out of pocket expense for the implants. There are maintenance issues with the implants, They will, however, have a better likelihood of giving me improved hearing. 'Improved' is the key word; they will not 'give me back my hearing.' Not like normal people hear or even what I was able to hear 40 years ago.
Each person is different and will have different results from the implant. Some get more benefit than others. Anything is better than what I have now, which is practically nil.
I met with the audiologist for the Cochlear Team June 4th. We had a long discussion about the procedure, my expectations (better speech comprehension and the ability to hear environmental sounds for my own safety), the various models of processors, which I was able to see, handle and try on. I have chosen the one I want - the Med El's Rondo, an off the ear model that has recently come out. Med El is one of the oldest cochlear implant companies and is well regarded.
There are several companies that make cochlear implants. The internal implants are all about the same. The external processors are all about the same . There are some minor differences in appearance and function of the external processors but not so much that the patient can't choose one they like. They come in all sorts of colors; you can get your favorite college or pro ball color, one that blends with your hair or one that makes a fashion statement. There is a totally waterproof model, which would be great for athletes, swimmers and folks that spend a lot of time in/on the water.
I had a CT scan done yesterday and met with the doctor who will do the surgery. I believe all my pre op questions have been answered. I have done a lot of research and feel that I am pretty well prepared. All systems are go and I'm scheduled for the procedure on June 26th. Only one implant will be done at a time. The second surgery will likely be within a couple of months or so after the first one.
My doctor is very optimistic that I will have good results, even though it has been quite some time since I've actually been able to hear sounds and speech. He suggests that I have a good chance to
get back more than my basic expectations.
Surgery is done on an outpatient basis. I probably won't miss that much work; maybe 5 to 7 days.
The implant won't be turned on nor will I be given my first external processor until my 2 week post op visit. I will have several therapy sessions after that, to help me learn how to use it.
I have never been shy about talking about my hearing and you can ask me anything you like. The more people know about hearing loss, the better. At some point, everyone will have to deal with someone with hearing loss. If I can help them to do that, I've accomplished something.
So. The next part of my journey begins.
I am joining the hive and becoming one with the Borg.
Resistance is futile.
Med El's Rondo, the model I have chosen.
Basic Facts About Hearing Loss
Tinnitus - I have terrible tinnitus. It can be so loud, in both ears, with multiple levels of noise, that I sometimes have trouble going to sleep.
Note: I will continue to provide updates on how my Century Plant is progressing.
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