Dislike my cochlear device after 3 years using it...??

Status
Not open for further replies.

Danb

New Member
Joined
Feb 28, 2011
Messages
167
Reaction score
0
I'm new to the forums and figured i'd just post right away.

Lately i've been thinking that I don't really like my cochlear device anymore. I've had it for 3 years. Its seems like the device is not really something that helps me but is something more to make other people feel better.

At first it was amazing. I could hear as soon as they turned it on, which they said doesn't happen very often. I can hear with it very well, almost %85 of my hearing has been restored in one ear. I'm deaf in both ears. I was deaf for only 4 years.

So i guess i'm posting because i don't really understand what the heck is going on with me. Why don't i like using it anymore? Does this happen?

Maybe your opinions can help me figure it out? :)
 
Probably because you feel you don't fit in either culture, deaf or hearing now.
 
I'm new to the forums and figured i'd just post right away.

Lately i've been thinking that I don't really like my cochlear device anymore. I've had it for 3 years. Its seems like the device is not really something that helps me but is something more to make other people feel better.

At first it was amazing. I could hear as soon as they turned it on, which they said doesn't happen very often. I can hear with it very well, almost %85 of my hearing has been restored in one ear. I'm deaf in both ears. I was deaf for only 4 years.

So i guess i'm posting because i don't really understand what the heck is going on with me. Why don't i like using it anymore? Does this happen?

Maybe your opinions can help me figure it out? :)

You pretty much answered your own question up there in bold.

The reason I say that is that you have been "accommodating the public" instead of being yourself. It gets weary after a while.

Have you learned any sign language? Met any deaf people? Where are you from?
 
Other than being a little perplexed that you had been deaf for only 4 years before getting your CI; other than what others here have been saying, I'd ask if you faithfully followed up on all your mappings, I'd say the decision is yours as to what you should do. Not much help, huh, lol....welcome to Alldeaf and maybe staying here, reading the different topics, you might be able to help yourself on this journey....
 
Hi Danb, I think your situation is pretty interesting. Is it a physical discomfort or a feeling of imbalance with just one, do people expect more of your hearing ability than you think your CI provides, or is it a feeling that the CI's extraneous and you can and prefer to communciate just fine without it?
 
Last edited:
Yeah i guess i did answer my question. Anyone else feel this way with their CI?

I'm from capecod MA. Two of my uncles have recently become hearing impaired, that's the extent of the deaf people i know. I don't know sign language but i think i want to learn.

I tried learning sign language in college but that was a nightmare. The teacher, myself and one other person, were the only hard of hearing people. There were 30 hearing students. At that time i could barely hear. Plus the teacher would make us stand up in front of the class to present. Pressuring someone to do that is not the best way to teach in my opinion. I dropped out of that class.

I want to start dating deaf women but dont' know where to start. I signed up to deafs.com but that is not going well. Any tips on good deaf dating websites appreciated too.

Does anyone know of a place in Massachusetts that teaches sign language one on one?
 
I only had 2 mappings and then the doctors said that the amount of hearing i get it is pretty much the max that anyone gets. So i didn't follow up with anymore mappings.

Hi Danb, I think your situation is pretty interesting. Is it a physical discomfort or a feeling of imbalance with just one, do people expect more of your hearing ability than you think your CI provides, or is it a feeling that the CI extraneous and you can and prefer to communciate just fine without it?

Yes it is uncomfortable. It kind of digs into my ear. I can only wear it for a few hours. I've tried using many different ear hooks but the CI is too big for my ear.

I don't have balance problems from the CI now, but did when i first got it. Though the imbalance was caused by swelling from the surgery and not the CI device.

Yes i think you could be right about people expecting too much from the implant. I explain to them that even though i have about %85 percent of my hearing back that it is still not like natural hearing. I still miss a lot of words and it is very difficult to keep track of a conversation. I can't seem to follow a conversation when there is more than 2 people, or if someone is talking too fast. If these things happen i get frustrated and start to panic. I actually will get panic attacks and need to leave the room. I won't even attempt being in a room with more than 10 people, and I avoid that at all costs.

If i had a choice i would rather communicate without it, but i am 100% deaf in both ears without the CI. I don't know how else I could communicate with the people i know because they would not be willing to learn sign language.

I'm kind of stuck, not sure what to do about it all. Its frustrating.
 
Wow, only two mappings!? I don't have a CI but I have generally followed the subject. But what your doctor said to you sounds awfully fishy to me. Hopefully, those who know much more than I do will chime in on THIS point.
 
I can imagine this would be frustrating. We do have a bunch of people on this board who are from Massachusetts. I bet they can point you in the right direction as to where to go for sign classes or deaf socials. My SO (significant other) is in ASL classes right now (I am deaf myself) and he has described to me the frustration some of the other students feel, and drop out. You're not alone in that regard!
 
Hi Danb, I think your situation is pretty interesting. Is it a physical discomfort or a feeling of imbalance with just one, do people expect more of your hearing ability than you think your CI provides, or is it a feeling that the CI's extraneous and you can and prefer to communciate just fine without it?

I noticed just now that you live in boston and in your signature says your 5 year old knows ASL? Do you know of a good place in MA that teaches ASL?
 
Yeah i guess i did answer my question. Anyone else feel this way with their CI?

I'm from capecod MA. Two of my uncles have recently become hearing impaired, that's the extent of the deaf people i know. I don't know sign language but i think i want to learn.

I tried learning sign language in college but that was a nightmare. The teacher, myself and one other person, were the only hard of hearing people. There were 30 hearing students. At that time i could barely hear. Plus the teacher would make us stand up in front of the class to present. Pressuring someone to do that is not the best way to teach in my opinion. I dropped out of that class.

I want to start dating deaf women but dont' know where to start. I signed up to deafs.com but that is not going well. Any tips on good deaf dating websites appreciated too.

Does anyone know of a place in Massachusetts that teaches sign language one on one?
I know a couple of people that feels that way with the CI. I was actually talking to one yesterday - he asked me about explanting.

Boston has a GREAT deaf community. Too bad I don't live there, I would guide you around.

A tip: google ABC sign cards - print one out. Practice every night before u go to sleep. Both using and reading ABC's. That will be a step in communicating with sign.
Hit up some socials - it will be a bit hard to find deaf people that will put up with a newbie... I feel real bad about this. But however if you express genuine interest - you will find someone to help.

On facebook there's the Boston Deaf Professional Happy Hour... https://www.facebook.com/group.php?gid=302377495281

Enjoy.
 
I only had 2 mappings and then the doctors said that the amount of hearing i get it is pretty much the max that anyone gets. So i didn't follow up with anymore mappings.

I know others will add some great local resources for learning ASL and finding a community of other deaf people. The MA comm for deaf and HOH can point you to or provide local ASL lessons -- they sent a teacher to our home on weekends -- and we were encouraged to invite family and friends. We have also taken classes at the Learning Center for the Deaf in the evenings -- deaf, native ASL using teachers teach ASL to the community, whether deaf, related to a deaf person, or you just want to learn. Sorenson will install a videophone for free in your home if you or a family member are deaf, and several organizations offer ASL instruction by remote (and then you also have a way to practice with others far away -- there are several people here who are extremely generous with their time and patience when it comes to new learners). You have already explored college-level instruction, but you may want to revisit that.

But I'd also recommend that you go back in for a few new mappings and push your CI clinic to help you get it to the point where you aren't missing words and frustrated in groups. I can describe intimately what a prelingually deaf baby encounters in the mapping process, but I've heard that it's not too far from what an adult recipient goes through, in terms of mappings: Typically you have 2-3 mappings during the first month you are activated, and then taper off from there to just 1X every 6 months to a year. So with 2 mappings in 4 years, you are probably only using the most primitive aspects of your CI (no specialized programming, no refinement of sensitivity and volume) -- just a flat unfiltered wall of sound from whatever direction you are looking at. My daughter could access and respond to sound right away, like you, and yet more than an hour after initial activation we were still with our audi, and her brain had adjusted: she could no longer hear what she had previously heard, the map already had to be adjusted. That's a good thing. They probably sent you home with a number of settings you can adjust yourself, right? Raising the volume higher and higher as your brain becomes accustommed to a new way of accessing sound. And you return the next day or week to add a new cycle and do it again. This continues until it stabilizes, sometimes over 3-4 mappings and then you move on to do the same with sensitivity, varying the amazing programs all of the brands have for groups, for one on one, for music, etc.

I know people who've had CIs for years and are still pleasantly surprised to discover new and better sounds after a different MAPping. I did notice that my daughther immediately went from removing her processor at about 4 each day (she was tired of hearing) to insisting that they remain on until she falls asleep once she had two -- I suspect it's somehow more comfortable and less tiring to be getting sound from both rather than just one.

She began wearing her Freedom BTEs at 3 without a problem -- but we found that the new N5s were much less likely to flop, they are so small, so we were very happy to upgrade -- do you have an older BTE? Some people get the long coil cords and attach their processors inside their shirt pockets when doing sports or rough work, so only the coil is on the head and nothing near the ears. We wrap my daughters' processors in her ponytail holder when she's doing gymnastics, soccer, or kung fu and flipping around a lot -- so they are nowhere near her ears. Headbands are another good thing -- you can get joybands for sports that tuck the processor into the band, not using the ear as a rest at all.
 
Hello, I just wanted to share my experiences, I was implanted 10 years ago at the age of ten and a half. After activation, I went back twice weekly for a month or so for mappings. Then it went to bi-monthly, then monthly. one month then bi-annually from two year onwards. I have been going every year since I do need a mapping by then. But now I'm in the adult programme, I only need to go when I need mappings. I do need a mapping right now but just need to wait for the right time due to work. If I had my way I'd go for mappings every few months!! It's just by the time I get home from a mapping I've already adjusted and crave more sound.

Even now, 10 years post implant, I am still improving.
 
I don't understand. Is it that the brain gets used to the sound and stops recognizing the sounds so new mappings are needed? If that's the case why do sounds change?

The first year i mapped three times; turned it on and mapped the same day because i could hear, then two more times 6 months apart.
 
I don't understand. Is it that the brain gets used to the sound and stops recognizing the sounds so new mappings are needed? If that's the case why do sounds change?

The first year i mapped three times; turned it on and mapped the same day because i could hear, then two more times 6 months apart.

No, you don't get mappings because you can't hear whatever. You get them to adjust sounds levels and to make the implant comfortable for you to use. Also I find with mappings that my hearing levels improve.
 
But I'd also recommend that you go back in for a few new mappings and push your CI clinic to help you get it to the point where you aren't missing words and frustrated in groups.

Some people get the long coil cords and attach their processors inside their shirt pockets when doing sports or rough work, so only the coil is on the head and nothing near the ears. We wrap my daughters' processors in her ponytail holder when she's doing gymnastics, soccer, or kung fu and flipping around a lot -- so they are nowhere near her ears. Headbands are another good thing -- you can get joybands for sports that tuck the processor into the band, not using the ear as a rest at all.

what I was going to post
 
Hi Danb: Like you I became deaf-Dec 20/06. I was operated on July 12.2007- fitted with Advanced Bionics-Harmony processor. I believe I had about 6 different mapping sessions over less than a year.They started in Aug/07.
.
Yeah weird music at the first singles dance- 3 days after activation- in Aug/07 brought me right back-adjusted immediately-the next day. Yeah appointment day it happened. Basically they were adjusting it so that I could "hear much better"-which in fact happened. All of this was done at Sunnybrook/Toronto-where I live.

It takes a few years for your brain to "kick over the new sound". It seems I helped myself-unknowningly-continuing "singles dances". Loud music to quiet people voices-at the same time. You must have the Cochlear Implant on all the time-how else can you get your brain to accept this new sound? Plus, of course, you will be picking much more sound that you missed before. Example-thought someone was following me-heard footsteps-looked around-MINE!Amusing-no doubt.Finally heard my own footsteps!

How much discussion did you have PRIOR to your operation about expectations from the audi? Think back-did you ask what is happening now?

Some random thoughts Danb on my experiences with Cochlear Implant

Implanted Advanced bionics- Harmony activated Aug/07
 
Last edited:
I know others will add some great local resources for learning ASL and finding a community of other deaf people. The MA comm for deaf and HOH can point you to or provide local ASL lessons -- they sent a teacher to our home on weekends -- and we were encouraged to invite family and friends. We have also taken classes at the Learning Center for the Deaf in the evenings -- deaf, native ASL using teachers teach ASL to the community, whether deaf, related to a deaf person, or you just want to learn. Sorenson will install a videophone for free in your home if you or a family member are deaf, and several organizations offer ASL instruction by remote (and then you also have a way to practice with others far away -- there are several people here who are extremely generous with their time and patience when it comes to new learners). You have already explored college-level instruction, but you may want to revisit that.

But I'd also recommend that you go back in for a few new mappings and push your CI clinic to help you get it to the point where you aren't missing words and frustrated in groups. I can describe intimately what a prelingually deaf baby encounters in the mapping process, but I've heard that it's not too far from what an adult recipient goes through, in terms of mappings: Typically you have 2-3 mappings during the first month you are activated, and then taper off from there to just 1X every 6 months to a year. So with 2 mappings in 4 years, you are probably only using the most primitive aspects of your CI (no specialized programming, no refinement of sensitivity and volume) -- just a flat unfiltered wall of sound from whatever direction you are looking at. My daughter could access and respond to sound right away, like you, and yet more than an hour after initial activation we were still with our audi, and her brain had adjusted: she could no longer hear what she had previously heard, the map already had to be adjusted. That's a good thing. They probably sent you home with a number of settings you can adjust yourself, right? Raising the volume higher and higher as your brain becomes accustommed to a new way of accessing sound. And you return the next day or week to add a new cycle and do it again. This continues until it stabilizes, sometimes over 3-4 mappings and then you move on to do the same with sensitivity, varying the amazing programs all of the brands have for groups, for one on one, for music, etc.

I know people who've had CIs for years and are still pleasantly surprised to discover new and better sounds after a different MAPping. I did notice that my daughther immediately went from removing her processor at about 4 each day (she was tired of hearing) to insisting that they remain on until she falls asleep once she had two -- I suspect it's somehow more comfortable and less tiring to be getting sound from both rather than just one.

She began wearing her Freedom BTEs at 3 without a problem -- but we found that the new N5s were much less likely to flop, they are so small, so we were very happy to upgrade -- do you have an older BTE? Some people get the long coil cords and attach their processors inside their shirt pockets when doing sports or rough work, so only the coil is on the head and nothing near the ears. We wrap my daughters' processors in her ponytail holder when she's doing gymnastics, soccer, or kung fu and flipping around a lot -- so they are nowhere near her ears. Headbands are another good thing -- you can get joybands for sports that tuck the processor into the band, not using the ear as a rest at all.

Thank you for all this information. I will definitely look into the MA commission for the deaf.

I have a Cochlear Nucleus BTE. I don't know what version the nucleus is. I think i might be eligible for an upgrade now. I see the newest ones seem to be much smaller.

The strange thing is that lately i actually have to turn all my settings down. I can hear better with lower settings. Things don't seem to rush in all at once when i lower it. I'm going to make an appointment for the mapping, upgrade and to get a long cord.
 
want to start dating deaf women but dont' know where to start. I signed up to deafs.com but that is not going well. Any tips on good deaf dating websites appreciated too.

Does anyone know of a place in Massachusetts that teaches sign language one on one?
Where on the Cape are you from? I believe Cape Cod Community college offers ASL classes, but if you want to go a bit further to Fall River there's an active and vibrant Deaf studies program at BCC. You can also contact DEAF INC http://www.deafinconline.org/about_us/index.htm.... I think they are offering ASL classes in April.
 
Wanting to date a "deaf woman". Does she have a "Cochlear Implant" like you? Does she use ASL-do you? Presumably one must interact where "deaf/Deaf" people meet for the possibility to actualize? Close to you?
Good luck in your new journey.

Implanted Advanced Bionics-Harmony activated Aug/07
 
Status
Not open for further replies.
Back
Top