cochlear implant testimony

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bwright6

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Hi all,

I was implanted in my right ear about 3 years ago and in my left about two years ago. I thought I would post a little reflection/testimony to see what you guys thought of my experience and perhaps provide advice, because I feel conflicted at the moment.

I was raised orally with bilateral hearing aids-- I was a "success story" because I read well above grade level, was able to speak decently, and got good grades. I managed to do this with very little accommodation (pretty much just "sit wherever you want"). I found out about cochlear implants when I was about 20 and decided that it would be a good thing for me. The first implant went well, no complaints. I then decided it would be good to get double implanted. Surgery went fine, and I was ready to continue life.

Well, it doesn't always come out peachy-- I started getting splitting headaches and the smallest noises started to become too much for me. Water dripping, toilets flushing, dogs barking, the flicker for turns in cars, etc-- I went to my audiologist and she tried to reprogram me-- it's been about four or five times that I've been reprogrammed over and over again. Being able to hear certain sounds became a nightmare for me so I stopped wearing them. I lived by myself last year and went through life quietly-- it didn't have too many adverse effects, other than socially.

I started learning ASL about two or three years ago, and fell in love with it then. I am also in deaf education-- I've always known that I wanted to become a teacher, and deaf ed seemed to be the right fit for me. I finished a placement in a oral/TC program, and am just finishing a placement at the deaf school. I go back to the oral/TC program for student teaching in a few weeks. It's hard for me because all my friends that I have had through life are hearing, and I feel like I am losing them because I stopped wearing my CI's and they do not know ASL. My roommate is hearing and is putting up with it quite well, but she has told me life would be easier for her if I would just wear my implants. When I was at the oral/TC school I forced myself to wear them because they had classes with both oral and ASL students, and it would be unfair to the oral students if I couldn't hear them and had to use an interpreter. I felt quite at home at the deaf school because I didn't have to wear my CI's-- how amazing! But I go back to the oral/TC program in two weeks...

I feel conflicted because my CI's DO give me sound, but they bring about a lot of pain. My parents certainly aren't happy that I don't wear them much, and my hearing friends are supportive but feel isolated.. Oh, the tangled webs I weave!
 
First, sorry to hear of your troubles. Would it help if you wear just one and not two implants? Perhaps that could be a good compromise? That if I understand correctly, did you start getting those symptoms after you got your second one?
 
Hi Ben, I'm thinking along the same lines: if you liked your 1st CI enough to go for a 2nd, can you put aside the troublesome 2nd one for a bit and go back to just one to see how you do?

But seems too that your MAP is really terrible. Shouldn't be any discomfort. Each of my daughter's CIs were MAPped 3 times in 6 weeks initially and then again every 3 months for the first 2 years. Now we just adjust every 6 months. It can take a lot of refining the programming initially, but might be worth it to give them another shot if it's causing you so much misery to be without. Not that I think it's necessary, just bringing it up since it must have been important enough to you to get 2 done as an adult.

On the other hand, it looks like you've done great without CIs for your whole life until you got them a couple of years ago -- you know you would be just fine without, especially if you began pursuing ASL alongside getting your CIs -- great approach.

Have to say this: those are really terrible friends, too, after 20 years of your life, during which you do just fine socially, they suddenly feel it's something of a necessity and worth losing your friendship over? Their loss, not yours.
 
Wow, your story sounds exactly like mine with everything except for the CI part. I am a teacher for the deaf and I feel more comfortable in a BiBi program than in an oral/TC program too. Hope everything works out for you.
 
It will be interesting to see what happens to me as I get my second one turned on Tuesday and I've been doing quite well with just the one for the last month or so. Before that had HA and CI for a year or so. I guess time will tell. Good luck and I think the one that suggested you try just one was probably a very good comment and worth a try.
 
Hi all,

Actually, when I only wear one, it creates this balance issue-- it feels incredibly imbalanced and it's very strange sensation. I wore my hearing aid to balance out the left ear when I got my right eat implanted-- so I think it makes sense. I'm going to the ENT doctor this week after waiting for three months for an appointment-- we'll see how that goes. As for the mapping, I have full confidence in my audiologist-- she has been my audiologist for almost 20 years and knows what she's doing. She feels my pain, and is trying everything to fix it. I'm pretty content without the CI's, it's just inconvenient for some important people in my life.
 
has your audi ever gone thru the electrodes and maybe just turn off the ones that may be causing discomfort..I know another user on here has done that and she is MUCH happier with some of the electrodes turned off and is fine now and doesn't have discomfort anymore
 
bwright6 said:
Hi all,

I was implanted in my right ear about 3 years ago and in my left about two years ago. I thought I would post a little reflection/testimony to see what you guys thought of my experience and perhaps provide advice, because I feel conflicted at the moment.

I was raised orally with bilateral hearing aids-- I was a "success story" because I read well above grade level, was able to speak decently, and got good grades. I managed to do this with very little accommodation (pretty much just "sit wherever you want"). I found out about cochlear implants when I was about 20 and decided that it would be a good thing for me. The first implant went well, no complaints. I then decided it would be good to get double implanted. Surgery went fine, and I was ready to continue life.

Well, it doesn't always come out peachy-- I started getting splitting headaches and the smallest noises started to become too much for me. Water dripping, toilets flushing, dogs barking, the flicker for turns in cars, etc-- I went to my audiologist and she tried to reprogram me-- it's been about four or five times that I've been reprogrammed over and over again. Being able to hear certain sounds became a nightmare for me so I stopped wearing them. I lived by myself last year and went through life quietly-- it didn't have too many adverse effects, other than socially.

I started learning ASL about two or three years ago, and fell in love with it then. I am also in deaf education-- I've always known that I wanted to become a teacher, and deaf ed seemed to be the right fit for me. I finished a placement in a oral/TC program, and am just finishing a placement at the deaf school. I go back to the oral/TC program for student teaching in a few weeks. It's hard for me because all my friends that I have had through life are hearing, and I feel like I am losing them because I stopped wearing my CI's and they do not know ASL. My roommate is hearing and is putting up with it quite well, but she has told me life would be easier for her if I would just wear my implants. When I was at the oral/TC school I forced myself to wear them because they had classes with both oral and ASL students, and it would be unfair to the oral students if I couldn't hear them and had to use an interpreter. I felt quite at home at the deaf school because I didn't have to wear my CI's-- how amazing! But I go back to the oral/TC program in two weeks...

I feel conflicted because my CI's DO give me sound, but they bring about a lot of pain. My parents certainly aren't happy that I don't wear them much, and my hearing friends are supportive but feel isolated.. Oh, the tangled webs I weave!
Click to expand...
See the bolded part. A much simpler solution would be to learn the oral kids ASL? How hard can that be? It's crazy that kids in the same class can't communicate with each other.
 
I'm sorry for your troubles, when did you have your first implant and did you like them? is the problem with the 2nd implant or with both?
What brand did you have?, as there is some problem with a certain brand going on now, could it be this what is happening to you?
I'm not sure how did you wait 3 months to see your audi, is she/he booked??, then how come you say she/he is good, I would never wait 3 months just to check a problem, she/he must get some assistants to help them, change your audi, why get stuck with some incompetent one, how would you know she is good if you have not tried some different one, it seems to me that your problem with the audi, plain and simple, CHANGE HER/HIM
Good luck, please update us
 
It is my ENT that was booked for three months-- my audiologist has gone above and beyond for me on this issue. I'll ask her about the electrodes thing!

As for having the oral kids learn ASL, I'm afraid it isn't that simple-- either their parents don't want them to learn, or they don't want to learn.
 
I hope your pain when wearing CI will be solved soon. Sounds very uncomfortable. Like most others say, wear one if it comfortable until it sorted.

Good luck!
 
flip said:
See the bolded part. A much simpler solution would be to learn the oral kids ASL? How hard can that be? It's crazy that kids in the same class can't communicate with each other.
Click to expand...

I know...sad that many deaf children cant communicate with each other because of oralism.
 
As for having the oral kids learn ASL, I'm afraid it isn't that simple-- either their parents don't want them to learn, or they don't want to learn.
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Ah yes.....those parents. Sigh. However, what percentage of dhh kids don't want to learn? I mean it owevedoesn't surprise me, since there are hoh kids who don't want to learn ASL. On the other hand........they are prolly still young and they may think " Oh I can hear and speak. I don't need ASL"
I thought that when I was little. (I'm hoh) But as things got more advanced, ASL and Deaf culture might have helped me a lot. Maybe if there are at least four or five kids who don't want to learn ASL, you could do specialized intervention with them. Like, demonstrate "hey check this out. When your hearing aids/CI are off or you're in a noisy sitution, you can use ASL!" Little kids often don't realize stuff like that......and it might help them when they are older, when things get more difficult.
 
I was one of those kids who didn't want to learn sign when I was younger-- then again, I was not exposed to sign as these kids in the self contained classrooms are. They see it everyday, but they still don't want to sign-- actually, I'd say it's about half and half-- some want to learn but feel a lack of confidence, and the other half just don't want to be associated with "that crowd".

I have the Nucleus brand...
 
as these kids in the self contained classrooms are. They see it everyday, but they still don't want to sign-- actually, I'd say it's about half and half-- some want to learn but feel a lack of confidence, and the other half just don't want to be associated with "that crowd".
Click to expand...
Well, maybe a good idea would be to talk to your supervisor about doing a specialized program for those kids! Heck, YOU could talk to them about how you prolly weren't all that confident when you started to learn ASL. Is there a stigma about ASL? Maybe you could help to get rid of that. Is there a "ASL is just for kids who can't speak well" mentality? If so that is really sad. Kids can and do pick up on adult cues really well.
if there is a "ASL is only for kids who can't speak well" mentality, maybe try to develop a " Check it out.....you can be BILINGAL, and function both with and WITHOUT HA/CI type of program. Like a signacy program specificly for hoh kids....and I gotta say that I think if you did, some of the oral only parents would opt for ASL instruction. Some oral only parents chose oral only b/c they think that Sign using programs do not concentrate enough on speech. Did you know there are Deaf Schools with hoh kids? Maybe contact Kansas School for the Deaf (a VERY good program!) or Oregon School for the Deaf or Wisconsin School for the Deaf or Florida School for the Deaf and Blind for hints/tricks etc re: encouraging hoh kids in signancy. I do think the purpose of Deaf Ed should be to get dhh kids as bilingal as possible. Instead of being "oh you don't need ASL" (like the way bilingal ESL classes function, as "soon as you get enough English fluency, you drop the first language" the kids would have two languages to use. I do have to say that I think that is going to be the key to survival of Deaf Ed, making it hoh friendly, and check it out''''you can be bilingal in spoken English AND ASL"
 
bwright6 said:
It is my ENT that was booked for three months-- my audiologist has gone above and beyond for me on this issue. I'll ask her about the electrodes thing!

As for having the oral kids learn ASL, I'm afraid it isn't that simple-- either their parents don't want them to learn, or they don't want to learn.
Click to expand...
It's a bit ironic that your income right now are depedent on you ASL skills, yet you partipicate in a program that don't encourage deaf and hoh kids to learn ASL. Not to mention the mainstream programs where hearing kids are encouraged to learn ASL for the sake of one deaf kid, while in some very deaf schools, it does not happen.

Know it's not easy, with parents and weak superintends, keeping the job, etc. My point is not to put you in charge here.

Hope you figure out the issues with your CI.
 
shel90 said:
I know...sad that many deaf children cant communicate with each other because of oralism.
Click to expand...
Oralist are doing the same thing over and over again, and expecting different results. Wait.. isnt' that the definition of insanity?
 
bwright6,

Maybe another possibility is to sometime just take a break from wearing the CI's when you're home, particularly when you're by yourself and not communicating with anyone. And then wear them when you're communicating with someone or when you go out.

Perhaps, maybe there also other helpful solutions. For instance, maybe your CI's has a problem with the moisture and a dry n store would help. Or maybe could they could also use new microphone protectors and so forth. Just to mention a few.
 
I would rearrange who my close people in my life are. Its not easy, but if they're not accepting you as who you are while you are HAPPY - why should you waste time with them?
 
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