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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-25-08 12:30 PM
Original message
Cochlear Implants??? Anyone? Anyone?
Edited on Wed Jun-25-08 12:56 PM by madmax
I've had sensori-neural hearing loss since my mid-twenties and it's be a progressive journey. I also have Rheumatoid Arthritis for which my meds have seemed to stop working. My personal theory is that they are crap from China but, I digress. My Primary Care Dr. referred me to Duke Univ. Med. Ctr. R/A clinic. During the time she was taking my history she inquired about my hearing loss since it was obvious I was struggling to hear her. We danced around the same ol crap of aids which I'm sick and tired of explaining to people that they would help me as much as bi-focals will help Stevie Wonder. That usually works but, sometime not. Anyway she made an appt. for me to have hearing tests and eval at Duke. Had the test yesterday.

Well knock me out!!! Now they tell me I'm a candidate for an implant!?! I'm at the end of my life journey so to speak and NOW... ok, yes better late than never. But, I'm apprehensive about this. I need to have a CT scan July 8th to the mastoid bone and cochlea are healthy.

I'm not asking for advice (mods :) Just wondering if anyone here has contemplated an implant, do you know anyone who has had one? The Otolaryngologist told me I could even go to Med-El near Duke at Raleigh Triangle Park to the company office and speak with someone there about their implant. He also have me tons of literature to read from 2 companies that Duke uses for implants. Med-El and Harmony. The cost is 100K but, he and the audiologist handle the insurance paper work. They said it's rare if ever that insurance companies deny implants.

I haven't used a telephone for over 10 years but, with the implant they said 85% of the patients use regular phones and cell phones. I'm tired of always needing to nag my husband about making calls for me!! And to understand speech, hear the ocean, birds chirp... but, it still scares me.

Any feed back will be appreciated. :hi:

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FunkyLeprechaun Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jul-11-08 01:32 PM
Response to Original message
1. I was born deaf
And got a CI 11 years ago, I got another one 3 years ago for my right ear. Before my CI I never used the phone. Now I do, but only with people who I understand (female members of my family for example).

That's amazing for someone who was born deaf and never used a telephone other than the TTY.

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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Aug-02-08 02:23 PM
Response to Reply #1
2. Hi!!
I just check in to see if anyone posted and finally someone did :) I had the operation on Thursday and was home Thursday night. Only had some pain for the first few hours after the operation.

Wow!! that is amazing! I'm so happy for you. IMHO, People have no empathy for hearing impaired or the deaf. And not that I think blind people have it made it's just that people don't make fun and pull practical jokes. And the one thing that drove me DAMN NUTS was everyone telling me to get a hearing aid. As if I was so vain as to want to not hear as opposed to wearing an aid. I got tired of trying to explain that there are just some things that CAN'T be fixed! So I would say, right and if Stevie Wonder got bi-focals he could see. That usually got them to understand.

My Mom would send me the 'Miracle Ear' ad out of magazines and tell me to send for it. <sigh> lol

Had the operation on Thursday and was home Thursday night. Only had some pain for the first few hours after the operation. My hearing loss began when in my 20's and has been progressive (I'm 59) The implant is in my right ear because I only had 12% hearing and I have about 40% in my right ear but, it sounds muffled. Like I'm underwater trying to understand the words.

The audiologist told me that the speech I hear with the implant would sound like a recording or mechanical. She said years ago people who had had hearing and went deaf described it as sounding like Daffy Duck. Well, I told her I don't know if I want Daffy living in my head. Just kidding - I want to hear speech so I don't care who it sounds like. But, I think the best discription given to me was by my daughter in law. She said, it probably sounds emotionless. Without normal inflections that humans project when they talk. Sounds good to me!

How long did you have to wear that protection cap on the side of your head? I'm want to take this damn thing off. First time I saw the Dr. he said I'd wear it for about 3 days. When leaving the nurse said wear it for 5 days. I may take it off later.

If you have time can you tell me how long it takes after the processor is programmed for the brain to adjust and begin to learn... oy, well I think you know what I mean. About how long does it take before one is 'hearing' words. They're making a big deal about support etc. My husband is very supportive. He's only person I know that has never gotten exasperated at having to repeat to me.

PM me if you wish.

Thanks for your post and I'm sincerely happy for you.

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sandnsea Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Feb-27-09 11:31 PM
Response to Reply #2
3. I had ear repair surgery today
I have a big plastic cup on my ear, now I know a little how dogs feel when they have those cones on their heads.

They hopefully fixed a hole in my ear drum and removed most of the bone because I have cholosteotoma and didn't really understand what was happening. So they are talking about some kind of implant or bone hearing aid in 6 months. I hear fine out of the left ear so I'm not sure I would want distorted hearing, although there are times I can't hear and have to ask people to speak up.

How do you like your results?
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-10-09 12:37 PM
Response to Reply #3
5. So sorry this has taken so long to reply
I had the surgery July 31 08. Sometime the end of August they programmed it and I was working on getting used to it. However, a simple trip to my rhuematolgist turned my life upside down. I was diagnosed with cancer. The dr. found a small tumor near my pelvic bone. Of course, that's not the primary source of the cancer. After something like 87 tests, they still can't find it. Must be the size of a gnats asshole. But, these wonderbastards told me I have 3 years to live. And this is Duke University.

Needless to say hearing isn't very high on my priority list anymore. After a mental melt down, I take it one day at a time and feel great. They tried to kill me with chemo and radiation but, I'm back and my last scan - I've got a new dr. said, it's the cleanest scan he's seen in a year and he told me....'honestly, I'm not bullshiting you'. Thank you DOC!!

I'm getting sick of asking people to make phone calls for me. They don't understand medical terminology e.g. radiation vs. radiology and they confuse everything. And most dr's won't communicate with me via email - privacy shit, law suits, who knows. What's the latest technology? Should I get TTY?

I had 2% hearing in my right ear and have 5% in my left which due to tinitus is somewhat distored. Using the implant for the short time I did use it wasn't all that easy. It's like hearing two different things. Since I wasn't born with this deafness and it didn't start until I was in my mid 20's I know what water running etc. sound like. With the implant I hear sounds but, they aren't the same. As in the water running example. I guess you have to use it a lot and over time the brain reprograms the sounds and one begins to identify with these new sounds. I dunno. I need a little more time adjusting to the cancer thing and then I'll give it another shot.

Thanks for posting to me and again, I'm sorry I just went awol. :hug:

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sandnsea Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Aug-13-09 10:19 AM
Response to Reply #5
7. Oh My Goodness!
You have sure been through hell and back. Good news about the cancer scan though. I just went to the doctor Tuesday and he said the ear drum graft looks terrific and no cholesteotoma. So I go back in February to talk about reconstruction or hearing aids so I can hear again. I think I'll go for the reconstruction based on the hearing aid info. Provided it works well. it's certainly easier to deal with than cancer. :hug:
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JustJeking Donating Member (92 posts) Send PM | Profile | Ignore Sat Mar-07-09 04:38 PM
Response to Reply #2
4. You did it!
When do they turn on the implants?

I have a severe to profound hearing loss myself - since birth. I now use American Sign Language to communicate. However, at work, I rely on lip reading and speaking (I grew up oral), and migod, it's been an extremely challenging experience. I just hope the cochlear implant works for you and help lessen the barriers that come with hearing loss. Am rooting for you! :)
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-10-09 12:39 PM
Response to Reply #4
6. Hi JustJeking
Sorry I haven't been around and didn't reply to your post. Please see my reply to SandandSea. :hug:
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