Actual CI users in here please ...

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Heath

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I would like to hear your experiences on what kind of CI you use and how the CI has changed your life for the better please ? Am thinking of getting CI's.

This thread is for the CI'ers who use the cochlear implants in real life.
 
What if it has not changed your life for the better or if it has proved no benefit. Wouldn't you also want to hear those results?
 
Positive or negative experiences with cochlear implants are welcome.

Just don't make outlandish claims but keep it real please. Thanks.
 
Heath, I don't have CI but I think its very important to ask yourself WHY you want it.
CI can be great for those who have maxed out their hearing aids, or if you have an unaidable ear or severe recruitment or tintitus, or very low speech perception with HAs.
Are you prelingal? Not a doc or expert, but I'm wondering if maybe the sucesses with prelingal deaf adults may be due to : progressive loss, being able to have had exposure to sound for a while (even as a baby. It wouldn't be as good as having a postlingal or perilingal loss, but your brain would still remember how sound sounded) or being able to hear some stuff with HA. I wish you the best.....also if you haven't tried any high power hearing aids for a few years, I would trial those. Some of the newer HAs REALLY rock. But then again there are lots of losses that just don't respond to HA.
 
Heath
I am a CI user. I was activated almost a year ago. I must say my experience with the CI is a positive one. It was one of the best decisions I made. I must say, it is not like a hearing aid where you put it on and sounds are amplified. It takes a lot of training, patience, time going to many appointments, and perserverance. I was activated in my worst ear which had a 110 db loss with 0 word recognition. With CI at last mapping my scores were an average of 25 db loss with approx 54% word recognition. Hope this helps
 
deafdyke said:
Heath, I don't have CI but I think its very important to ask yourself WHY you want it.
CI can be great for those who have maxed out their hearing aids, or if you have an unaidable ear or severe recruitment or tintitus, or very low speech perception with HAs.
Are you prelingal? Not a doc or expert, but I'm wondering if maybe the sucesses with prelingal deaf adults may be due to : progressive loss, being able to have had exposure to sound for a while (even as a baby. It wouldn't be as good as having a postlingal or perilingal loss, but your brain would still remember how sound sounded) or being able to hear some stuff with HA. I wish you the best.....also if you haven't tried any high power hearing aids for a few years, I would trial those. Some of the newer HAs REALLY rock. But then again there are lots of losses that just don't respond to HA.
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What are the most powerful and next generation of BTE hearing aids out there ?
 
chunkymonkey said:
Heath
I am a CI user. I was activated almost a year ago. I must say my experience with the CI is a positive one. It was one of the best decisions I made. I must say, it is not like a hearing aid where you put it on and sounds are amplified. It takes a lot of training, patience, time going to many appointments, and perserverance. I was activated in my worst ear which had a 110 db loss with 0 word recognition. With CI at last mapping my scores were an average of 25 db loss with approx 54% word recognition. Hope this helps
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I am glad your experience with CI was positive.

That is one of the things I am most concerned about is speech therapy. I never liked speech therapy to start with but now that I am older, it is possible I may take up speech therapy because I do talk & use my voice once in a while with PSE/ASL.
 
Cochlear offers online listening programs to help with speech. It's online you just have to join the Cochlear community. Right now the more powerful ha's that a lot of severe profound losses are the phonak naidas. I just got these and so far they are good...they are transpositional hearing aids so they are a bit diff then traditional hearing aids
 
Heath said:
I am glad your experience with CI was positive.

That is one of the things I am most concerned about is speech therapy. I never liked speech therapy to start with but now that I am older, it is possible I may take up speech therapy because I do talk & use my voice once in a while with PSE/ASL.
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if you can speak and hear with your hearing aids, you should be fine. you more likely don't need speech therapy. but you will need some help recognizing some sounds that you never heard of before. If you don't have a hearing friend or family who is willing tell you "what's that funny sound" is, it will keep sounding funny. until you recognize what it is, it will sound clear to you. I know it is strange, but that's what it's always been like to me.
 
Lighthouse77 said:
if you can speak and hear with your hearing aids, you should be fine. you more likely don't need speech therapy. but you will need some help recognizing some sounds that you never heard of before. If you don't have a hearing friend or family who is willing tell you "what's that funny sound" is, it will keep sounding funny. until you recognize what it is, it will sound clear to you. I know it is strange, but that's what it's always been like to me.
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That would be nice. :)

Sounds and being able to hear is what I would like to have in cochlear implants.
 
yeah, one doesn't usually need speech therapy after getting the implant, it's auditory therapy/training, since your brain is having to relearn all the different sounds and having to make sense of them once the implant is activated.

I'm still waiting to get my implant. Medicaid is slow with their answers.
 
AliciaM said:
Cochlear offers online listening programs to help with speech. It's online you just have to join the Cochlear community. Right now the more powerful ha's that a lot of severe profound losses are the phonak naidas. I just got these and so far they are good...they are transpositional hearing aids so they are a bit diff then traditional hearing aids
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Alicia brings up an excellent point.

This is online, you will need to join the real life CI community meaning socialising with people and learning about their experiences. You will get better results this way than soliciting results online.
 
Hey, I was pre-lingually deafened, I wore hearing aids from 14 months right up to 10 years old when I got my cochlear implant, I stil wear a hearing aid in my right ear. I was not really benefitting much from hearing aids and because I was a oral person and wasnt getting much sound I got a CI. Getting an implant is a major decision, it was easier for me since I didnt have to choose all by myself if I wanted it or not, I had the decision from parents, teachers etc. You will need a lot of support, to do a lot of researching to make sure you make the right choice for yourself. Have you also tried the latest digital hearing aids?#
You will also need to do a lot of hard work in learning to hear, keep your expectations low and be realistic. Think if you think it would help you, since a CI is not for everybody, in some people it does not work.
Even after 9 years I am still making progress, I was not one of those people who got from 0% word recognition to 100% in like 6 months. It took me a long longer. My word recognition while I was testing was at 72% but that was in a quiet room
 
Heath said:
I am glad your experience with CI was positive.

That is one of the things I am most concerned about is speech therapy. I never liked speech therapy to start with but now that I am older, it is possible I may take up speech therapy because I do talk & use my voice once in a while with PSE/ASL.
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Speech therapy is optional, you may have to go to like 5 sessions in the first few months but after that it is just audiotory rehab
 
My son was implanted and the surgeon, who was very experienced in CI surgery put it in wrong and had to do a second which was a dual array type. My son gained zero benefit from the CI. That is not to say that will be the case for you and I wish you the best but just be advised not everyone will benefit.
 
Curious about sounds ...

What sounds could you not hear with traditional BTE's that you now can hear with CI ?
 
You will also need to do a lot of hard work in learning to hear, keep your expectations low and be realistic.
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YES. Good point. Not to say the CI isn't amazing......but it does seem like since they loosened the canidacy they make it sound like it's the LATEST most technological gadget that will overcome ALL disadvantages of being hoh.
Remember the CI does not make you hearing, it makes you hoh. (even with the late deafened population it only makes them "almost hearing." They still will have difficulty in noise)
Maybe try the Oticon Sumo? Maybe a good idea might be to go to a Deaf School audi or another audi who is experinaced with working with deaf people who have been dhh since they were kids? I do think unless you have a "qualified for CI no matter what" loss or special circumstances, it might be worth it to see what the newer aids can do.
 
Heath,

It is good you are asking others about their experience with CIs. I would be as informed as possible before you make a decision on whether to get an implant. If you have not tried SUMO DMs or NAIDAs it is worth a try. I certainly would not opt for surgery unless I knew it was the only option. Be warned that the SUMOS are LOUD, I had headaches for weeks.

Learning to hear with an implant will take patience and practice so if you want an implant and you want to get the most out of it you will need to do work. I spent months doing aural rehab but being able to understand over 90% of words was worth the effort.

Implants are not perfect as I still have some trouble in noise, Overall I will say that getting the implant was worth it!

Crickets and the sound the furnace makes when it starts up are just two of the sounds my implant has allowed me to hear.
 
Thank you for the reminder about the Oticon hearing aids. They are the top of the line. The best of the best.

I will have to look into Oticon BTE hearing aids and see if I can try them for 30 days or something like that ?

See if there is a difference in low quality BTE's and that of a high quality BTE hearing aids.

The audiologist did say I am qualified to get cochlear implants so there is a lot to think about.
 
I will have to look into Oticon BTE hearing aids and see if I can try them for 30 days or something like that ?

See if there is a difference in low quality BTE's and that of a high quality BTE hearing aids.
Click to expand...
Yes. If you haven't tried a new high quality HA in a few years, it might be worth it to demo them.
 
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