Anybody similar to me?

J

J22

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Hello all...

I have been thinking about getting a cochlear implant for a while and also reading a lot of forums/blogs from the implant users. Before meeting doctors and audiologists, I'd like to find a few implant users who have the similar background as mine. I'm very curious how they do with CI. I'll start with my background with a few questions. I'm 39 years old and I was born deaf with Waardenburg Syndrome. I went to an oral school (St. Joseph's in St. Louis) but now, using ASL since 15 years old. I discontinued using hearing aids at about 25 years old. Without hearing aids for 14 years, I hope my auditory nerve can still function using the implant. I would say 60-70% of the time, hearing strangers could understand my speech. I'm aware - if I decide to go for it, I will need A LOT of therapy for audio and speech. That would be my commitment to do. Now, here are my questions... Will I be able to improve that percentage to at least 90% and also, will it improve the effectiveness to comprehend people in social situations?

Hope to get some posts from you. Thanks in advance.

Jon.
 
Hey!
Welcome!

You'll see that there's people with many different experiences and abilities to really use their CIs to the best of their ability.
The best thing I can tell you...do not have high expectations when you go through the pre-op process and activation process. As you already know, there's a lot of training involved. Some CI users that I know personally wear the CI and they expect to hear everything, and they get very disappointed. Some CI users I know have CI, and go through 2 or 3 months of training then they stop. Their sentence discrimination is 50% to 70%, and it could be better.
I was told by my audiologist that it's possible that my sentence recogization could go to 90% and up while it was at 6% with hearing aids. So yes, it's possible with GOOD TRAINING!

Someone told me that she thought that she became deaf because of nerve damage. They did a "water" test to check her equilibrium (?). That's how the doctors were able to tell that she did not have nerve damage, and instead she has sensoneural damage (like I do). People who have severe nerve damage in their cochlear, the CI will not be successful as the CI depends on good nerve damage. (If anyone wants to correct me on this, feel free to do so with proof. I was told this through several people.)

I do not know anyone with Waardenburg Syndrome with a CI, so I cannot comment on that.

I highly recommend you to look for several Audiologists that deal with CI. My audie does NOT sugar coat things about CI. She gets pissed off at parents who just want to make their child "hearing". She would not recommend CI to a deaf person if she feels that he/she will slack in the training. I love her. :-D It's exactly what I needed.
First audie I saw, did not spend any time explaining to me about what a CI is, what to expect etc. She says that I am a candidate solely based on the fact that I could speak well (wtf?). So I went to another for 2nd opinion. So..learn from my experience, find an Audiologist that you feel comfortable with, that's willing to spend a lot of time with you (I spent 3 hours with mine going over everything), that will understand your needs and more.

Good luck with everything!
Oh...and check out my blog. LOL!
 
J22 said:
Hello all...

I have been thinking about getting a cochlear implant for a while and also reading a lot of forums/blogs from the implant users. Before meeting doctors and audiologists, I'd like to find a few implant users who have the similar background as mine. I'm very curious how they do with CI. I'll start with my background with a few questions. I'm 39 years old and I was born deaf with Waardenburg Syndrome. I went to an oral school (St. Joseph's in St. Louis) but now, using ASL since 15 years old. I discontinued using hearing aids at about 25 years old. Without hearing aids for 14 years, I hope my auditory nerve can still function using the implant. I would say 60-70% of the time, hearing strangers could understand my speech. I'm aware - if I decide to go for it, I will need A LOT of therapy for audio and speech. That would be my commitment to do. Now, here are my questions... Will I be able to improve that percentage to at least 90% and also, will it improve the effectiveness to comprehend people in social situations?

Hope to get some posts from you. Thanks in advance.

Jon.
Click to expand...


Welcome. I wore ha since I was 10 until bilateral CIs at age 38. I have to say I love them. I do good in social settings. It depends on the room layout and the amount of people. My discrimation is up to 96% my hint sentences at 3 months.

I did my own therapy. I am a teacher so use the Speech teacher's resources. Right now I found my "th" sound. For the first time I am finding myself unable to pronounce a work like month. So she will work one on one so I can figure out how to make the sound.

If you have good auditory memory, the cis sound comes earlier. Good luck
 
Hi J22,

Just wanted to give you a welcome! I have Waardenburg's syndrome as well and have been really pleased with my 2 CIs.

Obviously as you haven't worn hearing aids for a while it will take you some time to get used to sounds again, as your brain is used to quiet. However, I think your earlier oral background will probably help you a lot. It doesn't sound like people will have any trouble understanding you either if they already get 60-70% of what you say. If you already use ASL much of the time then that may help with any earlier frustration you may feel.

I don't think anyone here can give you any guarantees about percentages and such the like. Everyone is different. People who get lower than 90% with no visual cues have been for example really happy with their CIs whereas some higher performers are unhappy because it's not quite like natural hearing. It depends on your expectations and the more realistic you are the happier you will be!

Good luck with it all.
 
To me Cochlear Implant is
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However, I think your earlier oral background will probably help you a lot.
Click to expand...
Well I wouldn't quite say that. If he got some speech with hearing aids, yeah, b/c he would already have that listening experiance....but I think if he got essentially nothing with HAs, he's gonna have a very tough time.
 
It depends on the individual.

I've seen people with CI who go 10 years without improving much and those who improve a lot in 2 years.
 
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