New to CIs

[R2D2]

Hi all,

I'm really pleased to find this website. Most of the CI forums seem to be dominated by late deafened people and I specifically wanted to read more about the experiences of those who were born deaf.

I was born severely/profoundly deaf due to a genetic condition and fitted with hearing aids at age 2.5 years. I took to them very well and was able to speak fluently, get through school, uni, work and travel the world etc. Phones, TVs, radios were the only things that were off limits to me. Three months ago the residual hearing in my left ear suddenly departed and my hearing aid gave me headaches and I experienced 24 hour tinnitus which is still my constant companion Anyway my audiologist informed me that my hearing is not coming back and that cochlea implant is something I could be assessed for.

I was totally surprised as I didn't think that adults who were born deaf could benefit. I have a friend who was one of the first people in Australia to be implanted and it didn't work for him. He had never heard sound or used hearing aids prior to the implant though. He is not bitter about it he knew that there was little chance of it working but he felt he had nothing to lose.

Also I had mixed feelings because my sister has a profoundly deaf son back in the 1990s and she chose not to implant him for political reasons and because it was "major surgery". My mum was was a deaf educator before she retired also is negative about CIs. I also worked for a deaf charity for a while and I remember the controversy that CIs generated. So it is a pleasant surprise to read some of the messages here that indicate it is becoming more acceptable in the deaf community.

After reading your messages my fears are considerably diminished and my fear now is that I won't qualify in the assessment!

R2D2

 

[deafdyke]

R2D2......Yes, welcome! Actually I think that the CI is less sucessful in born deaf adults who really didn't have too much residual hearing.
Yes, I think this place rawks in terms of even coverage of dhh issues.....there are some anti-CIers here, but it's really quite moderate here. At least we don't have the "CI is the Seventh Wonder of the World" types who almost sound like they are selling it or something.

 

[sr171soars]

R2D2...As DD states, the truly deaf with little or no residual hearing have the hardest peak to climb. If you were able to hear enough to speak, then your chances are much better. Just remember...there are no guarantees in life.

As for a CI being major surgery, that is far from the case these days. They got that down to less than three hours and you go home the same day. Been there and done that.

I had my CI done back in March. Never looked back and it has been such a blessing for my life. I'm one of those HOH types who started wearing a HA since three and did quite well in the hearing world. Then the time came when I realized that my hearing got to the point that I had to consider my options. After serious consideration, I finally did it. I was told that I would probably do very well with it and that has been the case. My main reason for doing it was to still be a part of the hearing world (I have a wife and two kids all with normal hearing and on it goes...)

Take your time to consider all your options and decide what is best for yourself.

 

[DefLord]

r2d2 -

First of all, every CI individual is different. I am from a deaf family as well, and I am very active in the deaf community. And there has been a few deaf leaders getting CI's as well. (Even someone who used to be an officer for NAD). But it also depends on what you want and what you expect out of this CI. This plays a BIG BIG role on your expectations. Will you hear perfectly? No... Will it help you hear things better - Yes.. It is going to help you understand every single word that is spoken - No.. (most of it yes, but much more than before). Also age plays a role in this as well. Honestly just do your homework and check around. It took me over a year before I went with it. I saw some people who it didnt work and I saw some people who it did work. You just have to really check around. Hope this helps!

 

[deafdyke]

R2D2, I think I read or heard somewhere that CIs REALLY help with tintintus.
You really do sound well adjusted about the decision to undergo implantation....Just remmy that in terms of hearing a CI works akin to a hearing aid....it doesn't cure or restore hearing.....just makes you functionally hoh.

 

[R2D2]

R2D2, I think I read or heard somewhere that CIs REALLY help with tintintus.
You really do sound well adjusted about the decision to undergo implantation....Just remmy that in terms of hearing a CI works akin to a hearing aid....it doesn't cure or restore hearing.....just makes you functionally hoh.

Thanks for that - if I could get something back similar to what I had with my hearing aids I'd be really happy. I am so missing them - just missing the independence and choices they give me. I would even live with the tinnitus if I could get some usable sound. It's annoying but not life threatening.

I'm just hoping that my auditory nerve isn't too damaged for a CI. Every time I put in my left hearing aid now I seem to get a "GET IT ORRFFFF!" reaction that I think is coming from the hearing nerve. I'm having a CT scan next week to see what actually happened in terms of damage when I lost my hearing 3 months ago.

R2D2

 

[R2D2]

r2d2 -

First of all, every CI individual is different. I am from a deaf family as well, and I am very active in the deaf community. And there has been a few deaf leaders getting CI's as well. (Even someone who used to be an officer for NAD).

Thanks for your response. I have been reading your story with interest and it certainly gives me an idea of what to expect or what the process is like. How long did it take from the time you began assessment to the surgery?

Interesting about the deaf leaders getting the implants. I'm not active in the community but all the deaf people I know are opposed to them, with the exception of the friend who had it done early on unsuccessfully.

R2D2

 

[R2D2]

I had my CI done back in March. Never looked back and it has been such a blessing for my life. I'm one of those HOH types who started wearing a HA since three and did quite well in the hearing world. Then the time came when I realized that my hearing got to the point that I had to consider my options. After serious consideration, I finally did it. .

Thanks - I think we are quite similar in that until now I've been functioning easily as HOH with hearing aids and very much involved in the hearing world. My husband is hearing and so is my daughter. But this increase in hearing loss has been a reality check. I really hope that CI is an option for me.

R2D2

 

[DefLord]

Thanks - I think we are quite similar in that until now I've been functioning easily as HOH with hearing aids and very much involved in the hearing world. My husband is hearing and so is my daughter. But this increase in hearing loss has been a reality check. I really hope that CI is an option for me.

R2D2

Aye I totally understand what you are going through.. My wife and kids are all hearing - so I miss out so that was one reason why I got the CI. Because my kids are in piano and music - so I didn't want to miss out on those. As for CI - yes, it is SLOWLY moving through - it will take time before I feel that it will be like coming around with glasses. Honestly the surgery is very routine, It is not like getting a bypass surgery. I had my assessment done in August then I had my surgery in November and then I got turned on in December. At this moment, I can say it definitely helps me to hear much better and hear much more than I ever heard before. But again it will be interesting to see how things go at the end. So, so far I hav ebeen pleased. But of course it isnt going fast enough! hah!

 

[R2D2]

It's funny that isn't it? I never had any interest in music at all before my daughter was born and now I sing nursery rhymes to her, probably completely out of tune but hey who cares? My husband (hearing) is musical and is keen that she has piano tuition so it would be nice to be able to hear anything that she does even though it will never sound the same as to a hearing person.

Wow the CI timeline happened pretty fast for you.

Question - I know this is vain and probably irrational because I've never been bothered wearing hearing aids but do you get a lot of public comments and questions when people see your implant? I'm quite a "mind your own business type" as I don't feel I should have to explain anything to Joe Public.

R2D2

 

[sr171soars]

R2D2, I think I read or heard somewhere that CIs REALLY help with tintintus....

Yes, it can help with this situation (and it does for me!). However, it doesn't always do so. I have heard of several CI wearers that their tinnitus didn't go away but rather it changed sometimes for the better and sometimes for the worst. I think it is the case where the medical community is still trying to figure out exactly the causes of it.

 

[sr171soars]

Question - I know this is vain and probably irrational because I've never been bothered wearing hearing aids but do you get a lot of public comments and questions when people see your implant? I'm quite a "mind your own business type" as I don't feel I should have to explain anything to Joe Public.
R2D2

From my experience, it isn't as bad as one would think. Some people notice (especially kids - they see things but unless they ask you straight up, you generally don't get bothered by others. I had one or two ask about but only because they were considering it for themselves or were very interested in it and knew about CIs (asking how well it worked for me).

Since I was in a study for Cochlear Inc., I had to wear a beige one and hated it since it was so much more obvious with the magnetic stick on transmitter. In contrast, I always worn a beige HA and it blended in well and I didn't care (I didn't realize you could get color!). After the study period, I got a silver BTE unit with a black magnetic part and it really blends in well. I'm still awaiting for my blue BTE unit with black transmitter...so you can see I gotten "flashy"

 

[sr171soars]

Thanks - I think we are quite similar in that until now I've been functioning easily as HOH with hearing aids and very much involved in the hearing world. My husband is hearing and so is my daughter. But this increase in hearing loss has been a reality check. I really hope that CI is an option for me.

R2D2

I wanted to mention how well I'm doing with it if nothing else but to encourage you in the possibilities. I hear better than I ever did with my HA except maybe when I was very young and had much more hearing back then (using a HA). With my CI, I hear quite well, can hear around corners (speech included), don't need to see faces when listening to speech, use the phone regularly (including doing conference calls), hear music quite well (I play it all the time at work...softly of course), hear in the dark (like in the car listening to people behind me) and so on.

Of course, as deflord stated earlier, everybody is different. You may get similar results, do better, don't do quite as well, do environment sounds well but not speech or visa versa and so on. It just depends on the person. But I have heard of others doing what I can do. The potential is there.

Just keep your expectations in line with the experts as they have a good feel how one might do and they have lots of experience with this.

 

[R2D2]

From my experience, it isn't as bad as one would think. Some people notice (especially kids - they see things but unless they ask you straight up, you generally don't get bothered by others. I had one or two ask about but only because they were considering it for themselves or were very interested in it and knew about CIs (asking how well it worked for me).

Since I was in a study for Cochlear Inc., I had to wear a beige one and hated it

That's interesting. I'm dark skinned with black hair and I remember how excited I was as a child when they finally offered other colours than beige. The funny thing was that all my white deaf friends also dropped the beige as well and went for the dark brown ones I favoured.

I think I've only ever noticed one person with a cochlear implant in public, maybe I've "seen" a lot more but haven't noticed. Australia is very big on implants and I've found a very high level of awareness in what they are so far among my acquaintances.

R2D2

 

[R2D2]

With my CI, I hear quite well, can hear around corners (speech included), don't need to see faces when listening to speech, use the phone regularly (including doing conference calls), hear music quite well (I play it all the time at work...softly of course), hear in the dark (like in the car listening to people behind me) and so on.

I've never done any of that with hearing aids so I'm not expecting it with CIs. I want to stay realistic. It would be a fantastic bonus if I was able to use the phone though. It would really open up the world of work for me. I am a qualified accountant but have been limited by not being able to use the phone, although e-mail has been great.

Just keep your expectations in line with the experts as they have a good feel how one might do and they have lots of experience with this.

Good advice.

R2D2

 

[deafdyke]

I hear better than I ever did with my HA

Yeah, but how old were you when you went deaf? I know the research indicates that those who LOST their hearing do better then those who went deaf early on, or who never had normal hearing in the first place.

 

[sr171soars]

Yeah, but how old were you when you went deaf? I know the research indicates that those who LOST their hearing do better then those who went deaf early on, or who never had normal hearing in the first place.

I've always have been diagnosed HOH from birth. They estimated (at birth) that I had maybe 70% in my right ear and 30% in my left. By the time I was five, I believe my left ear was gone and I went to 50% loss in my right. I was fitted with a HA at three as my mother knew there was something wrong early on (all the obvious signs of not hearing). The theory is that my nother got Rubella before I was born.

Bottomline...I never had normal hearing.

 

[R2D2]

Well I had my CT scan yesterday and the cochlear is normal. The scan only lasted 5 minutes but I had a mild headache afterwards. Not sure if it was related?

Anyway my next step is to see the surgeon on 25th January to see if I qualify. :Ohno: I already did the speech tests with the audiologist.

R2D2