
Hi everyone, I’ve lurked on here before but this is my first post… and extremely important for me. My name is Shane, I’m 20, and I was born profoundly deaf in both ears, NOT genetically deaf (my Mom was ill when pregnant with me). Anyways I have been wearing HA all my life and am comfortable with them. About 7-8 years ago, I switched from analog to digital Widex Senso hearing aids. Lately, I have been under pressure from my audiologists, my parents, and my ear doctor to get a CI.
I was also born deaf. Do you have any audiograms or idea of your hearing loss in db? My deafness might be genetic but no one knows for sure. I wore the same Widex HAs as you did from 1998 to 2008 and upgraded to the Phonak Naidas. You should try that HAs or some other better HA. Why are they even discussing CI without you first trying the most recent HAs? :roll:
First, before I state my fears/questions about the CI, I’m going to describe my HA experience. I can hear a lot with my HA. I can hear the birds chirping, crickets, the wind going through the trees, the cars going by on the road 2-3 blocks away, the shopping carts going by at the supermarket, the keys clicking in the lock etc. I can tell the difference between male and female voices. I enjoy classical music tremendously, and can pick out each instrument being played!
I used to be able to hear birds too when I was your age. I still hear everything else you hear. I just don't hear high frequencies anymore, oh well my hearing friends say high frequencies aren't really important and are just annoying.
However, when it comes to speech, I can hear speech and understand it if it’s close by and spoken in front of me. I can read lips very well and I use the hearing of the voice along with lip reading to achieve a very high success in accuracy of understanding the speaker. I have little trouble understanding strangers.
Same here! I understand like 80% from reading lips.
HOWEVER when it comes to hearing on the phone, radio, and mostly t.v./movies it is near impossible for me to understand what is being said. I can hear the voices very well (volume wise) but not mentally understand/piece them together. Only when it is spoken clearly and slowly, I can understand a bit of it but that’s rare. If I’m watching a movie and I pay attention well, I can get most of it.
You could consider relay service for phone or just have a hearing friend or family do the listening for you on the phone. I have my dad take phone calls for me. As for TV, there has been CC for 20 years now and all decent movies and shows have CC!
In a classroom, I can’t understand the professor unless they are close by. Groups of people are a problem as well.
I had a notetaker since middle school and when the notetaker was absent, I would just read the teachers lips or copy off a student's notes.
I am apprehensive of getting a CI, because mainly of the risk of losing my hearing in that ear for the rest of my life if it doesn’t work out. I know what the odds are of something like that happening, yes they may be small, but it is still scary enough. I read about people only hearing pulses and never hearing again, and as well about the body rejecting the CI altogether.
That is one of my main reasons why I have little interest in CI myself. Before the hype and lax requirements, only those with virtually no residual hearing were CI candidates. Funny you mention only hearing pulses, I had a dream a few nights ago that I got CI and everything sounded like puretone beeps/pulses and my speech with CI was 0% which was worse than with HAs. Yet even in my dream, I wasn't against CI. I got CI in my dream because my loss became progressive and was quickly on it's way out. I knew that
any sounds I got from a CI was better than total silence that would follow as my hearing loss become 100% total deafness. I believe in CI for total deafness and even viewed a powerpoint slideshow that mentions CI being an option for category V hearing loss which was total loss.
I don’t want to lose the beautiful sounds of Pachelbel or Mozart. I actually cry thinking about possibly losing the gift of being able to hear classical music and the birds etc. as well as I do now.
Then CI is definately not for you and I totally respect your choice.
The audiologist (who has been pressuring me because she says the insurance option will run out when I’m 23), says “oh you’ll hear it better and you’ll be able to talk on the phone” etc. It’s very frustrating b/c they assume they know what I hear etc.
Thats what they say now but no one can guarantee anything, period. I read a CI blog of this guy whos audiologist said CI would let him hear on the phone. He got CI and all he could hear was a few words and simple sentences. He conforted his audiologist and she said that he was a success since he could hear on the phone. Hearing a few words and simple sentences wasn't what he had in mind! Only 10% of those with CI hear perfectly on phones. Why would your insurance expire at age 23? Ive seen 60 year olds qualify for CI! There is no rush!
If I can hear the voices and environmental sounds already, how in hell is the CI going to help?? Is it worth the risk? I don’t want to lose my hearing, but again I want to be able to talk on phone , hear radio etc. How do I know the CI will do this for me?
My audiologist once recommended CI to me after seeing my audiogram. He didn't think I would get any benefit from HAs but let me try the Phonak Naidas. After seeing that I could understand some speech from my father without lipreading, he retracted his CI recommendation! When I asked what he thought in an email, he said that CI might help me or they might not help me but that I could never go back to HA. Only you can decide on the risk, don't let anyone pressure you! :roll:
P.S. should I check out newer HAs? Maybe all I need is training to recognize the speech like post-CI patients do?
Yes!!!!!!!!!!!!!!!!!!! It really upsets me when people rush into CI without first trying the best HAs! I thought it was standard protocol that every CI candidate who still had residual hearing get a 30 day trial of the most recent and powerful HAs! Yes!!!!!!!!!!! Train your brain and your speech will improve! Depending on how much residual hearing you have, you might be able to match CI like Phi4sius did. In my case, I will never understand speech as well as most with CI since I just don't have enough residual hearing.(that will change in a few years) Oh well, with lipreading, I understand speech as well as those with CI do.
ALSO, should I wait for CI technology to become less risky/less invasive? I have residual hearing that I don't want to get destroyed.
I suggest you read other threads on alldeaf and check out my blog(link in sig) youll be surprised what new technologies are on the horizon.
Best of all, there is better technology on the way, such as Hybrid CIs that can preserve residual hearing and boost speech discrimination much better, b/c the array only goes in 10mm. Not only that, clinical trials on hybrid CIs are being performed NOW. The tech can and will most likely get better.
I suggest you read the thread on hybrid CIs. They don't/won't work and most people end up losing
all their residual hearing within a year anyway. Besides hybrid CIs aren't even for the profoundly deaf, you need alot of residual hearing in the low frequencies and if you had this much residual hearing, youd score 50-80% speech anyway and not qualify!
Besides Hybrid CIs, they are developing thin film arrays, which allow for hundreds of more electrodes and nano technology to allow surgeons to avoid obstacles in the cochlea.
I read a such article in 2006 of 128 electrode CI. Funny there's no further news on this. However there's tons of news on something much better that youll find out by reading relevent threads on alldeaf.
Am I making the right decision? WHY DIDN'T MY AUDIO TELL ME ABOUT HYBRID CIs??? I am upset she never mentioned them. And I am even more upset about the insurance thing.
What's your audiogram? Chances are you have more than 60db loss in the low frequencies which would disqualify you for hybrid CI. Besides I know a woman with 60db loss at 250Hz who got hybrid CI. She now has 85db loss at 250Hz and doesn't wear a HA in the CI ear as she lost too much hearing even with a hybrid CI. She will probably lose the rest of her residual hearing in the CI ear soon. She is missing out on all the low frequencies in the CI ear and music doesn't sound good. Sure her speech scores improved a little(they weren't bad to begin with) but she traded away alot of other aspects to hearing that goes beyond just speech. There's so much more to hearing than speech and besides we can get good speech scores from reading lips.
I was told by my parents that if I get my own insurance at the cut-off age of 23, the insurance will determine it as a pre-existing condition right? And deny me coverage??
Then you could try getting on medicare/medicaid. I wouldn't take a CI for free so I don't care about insurance anyway. See my blog and youll understand why. Also see all the other threads on alldeaf and my reply in those threads and youll see why. Thanks for reading. You may want to show your parents my blog and other threads, they are a very interesting read and youll understand why I am waiting.

I have shown this to my own parents and they understand. My dad isn't a fan of CIs for good reasons. Why are your parents and audiologist so interested in you getting CIs anyway?