Adults who have (or had) a CI

[dreama]

I'm interested in the personal experiences of those with a CI and what affects they have on your chosen lifestyle. Please take part in Poll and also answer in more detail if you feel up to it.

What is the best thing about wearing a CI?
What is the worst thing about wearing a CI?
Is there anything that you think people should know about CI before they decide to get one for themselves or their children?

(Although I have been very anti CI in the past some people do seem happy with their CI so I've decided to keep an open mind about these devices even though I'd never get one for myself)

Also this poll is for those who HAVE or HAD a CI surgery. Not for people who feel strongly about CI or for those with CI children. I've seperate poll for them and also thinking of another poll for friends/colleagues/teachers of CI users to air views.

 

[vallee]

What is the best thing about wearing a CI?When I wore hearing aids, I had terrible migraines and it was painful. Since I have been wearing CIs I have not had any migraines or painful hearing. The sound sounds very natural and complete. It gives a full range of sound. I am not missing the high frequencies or middle ranges. I hear it all.
What is the worst thing about wearing a CI?The batteries going out. I hate to change them. That is about it. I love them.
Is there anything that you think people should know about CI before they decide to get one for themselves or their children? That my progress is different from others, no two people have the same outcome. I also want them to know that the choice is personal and don't base your choice on mine. Most importantly it is a lot of hard work, but worth it.



.

I respect your open-mind about cochlear implants.

 

[sara1981]

im not using CI when im grew-up but my parents cant afford for CI

 

[overthepond]

When I was wearing HA's, it was too quiet and muffled. Now with CI the sounds is flourishing! and clearer than i ever heard before, ALSO i can crank it up to the levels i can bear with. Tinnitus also disappeared.

Worst thing is when the batteries died on me without warning and i was in the middle of doing something. And the silence!!!

It was my own choice to chose CI approach, I have worn it non stop since i was switched on 2 months ago apart from sleeping and showering. I was implanted at the age of 30. I still rely on lipreading as it's still early days. I was brought up as oral only approach, it was me who didn't want to sign when i was small child, My hearing parents still signs to me nowdays (not that bothered really)

I am glad i had mine done, It had given more sounds to my ear/life.

 

[Hear Again]

I'm interested in the personal experiences of those with a CI and what affects they have on your chosen lifestyle. Please take part in Poll and also answer in more detail if you feel up to it.

What is the best thing about wearing a CI?

In my case, there are two things I love about having a CI: increased personal safety and having the ability to communicate with others. Prior to receiving my CIs, I used alternative communication techniques for the deafblind. Some of these techniques were slow and time consuming. As a totally deafblind person, I also feared for my own personal safety at times while traveling outdoors. Thanks to my CIs, I'm now able to travel independently with confidence and without fear of anything bad happening to me.

What is the worst thing about wearing a CI?

One of the things I don't like about my CIs is when the batteries die. They always seem to die at the most inconvenient moments.

Is there anything that you think people should know about CI before they decide to get one for themselves or their children?

They should understand two things: A CI is not a cure for deafness and a person will not hear/understand everything when the CI is activated. Just because a child or adult has a CI does not mean they are hearing. They are still deaf. After the CI is activated, it takes patience, persistence and hard work to learn how to hear with a CI. Some CI users will progress more rapidly than others, but it still takes a good deal of practice for one to be comfortable hearing with their CI.

NOTE: dreama, in your survey, I would change one option from "I wear my CI almost all the time" to "I wear my CI all the time."

i

 

[Hear Again]

im not using CI when im grew-up but my parents cant afford for CI

Off-topic...

Sara,

Many insurance plans cover CI surgery, so your parents wouldn't have to pay for the cost themselves (except perhaps for a small co-pay depending on their insurance carrier).

 

[dreama]

Thanks for all your responses.

Hear again: I don't know how to change options. But what I meant by almost all the time is All the time while awake but surely nobody sleeps with their CI switched on? If a moderater could change it from 'almost all' to 'all or almost all' that would help. Otherwise you can take it that's what I meant.

 

[Hear Again]

Thanks for your response.

Hear again: I don't know how to change options. But what I meant by almost all the time is All the time while awake but surely nobody sleeps with their CI switched on? If a moderater could change it from amost all to all or almost all that would help. Otherwise you can take it that's what I meant.

dreama,

Thanks for the explanation. When I read that option, I was thinking you meant during the daytime.

By the way, I sleep with my CI on if I have an important appointment that I can't miss. When I use my vibrating alarm clock, sometimes I have a tendency to oversleep because the vibration isn't strong enough to wake me up.

 

[ClearSky]

HearAgain, I thought that the Nucleus BTE had the capability to turn on a sound signal that only you can hear that the battery needs to be replaced.

I understand what you mean.

 

[Hear Again]

HearAgain, I thought that the Nucleus BTE had the capability to turn on a sound signal that only you can hear that the battery needs to be replaced.

I understand what you mean.

ClearSky,

Yes, the Freedom BTE emits several beep tones 5 minutes before the batteries need replacement.

 

[Endy]

You all are excellent resources. I am thinking about receiving CIs in the future. I'd love to listen what you said, share your experiences with us, and so on.

Yeah, I was almighty against CIs because I am damned Deaf, went to Deaf school, Fluent ASL, Deaf Culture, etc. Now, things changed because of where I am right now, ideas of CIs just came up. Thought it'd make things easier for me. I don't say that it's a cure. I am saying that I wish to improve myself and receive better benefits.

I am looking forward to hear more from all of you in this thread.

 

[LadySekhmet]

What is the best thing about wearing a CI?
What is the worst thing about wearing a CI?
Is there anything that you think people should know about CI before they decide to get one for themselves or their children?

Best thing: having the clarity and discrimination in speech that I could never have with my HAs and hearing crickets!

Worst thing: Probably waiting for my damn hair to grow back! I have waist length hair, and it's sticking out right now.

What I think people should know - all the risks, that they're still deaf, and CI work best for those who are willing to go through the training and have auditory memory. I would not recommend it to someone who never wore hearing aids or really spoke...they would be in a HUGE shock, and probably would hate it.

 

[Endy]

Many insurance plans cover CI surgery, so your parents wouldn't have to pay for the cost themselves (except perhaps for a small co-pay depending on their insurance carrier).

Hmm, what about Medicare/Medicaid? And, I was looking for the insurance plans through insurance carriers, My online research really sucked, could not find good insurances to cover CIs. Can you name few insurances via PM, or if you feel comfortable to name one here. Thank you.

What I think people should know - all the risks, that they're still deaf, and CI work best for those who are willing to go through the training and have auditory memory. I would not recommend it to someone who never wore hearing aids or really spoke...they would be in a HUGE shock, and probably would hate it.

Interesting... if it really huge shock, would it include counseling to adjust the shock? Anyone you know who went through the shock for those people who never spoke. I am one of them. However, I can assure you that I have a lot of hearing people are eager to help me getting through. Yeah, I made announcement that I am seriously thinking about it. They are here to support me. I really appreciate them so much. I'd like to hear your expereinces on shock adjustment.

 

[Endy]

Can you explain why you people mentioned the name's CI technology, implanted and activated with dates along?

I did not notice until now... you all stated your CI's, dates of implanted, and dates of activation. Is it necessary or is it important? You all remembered the specified dates so well. That's what intriguing me mostly at this moment. Seems like it is a biggest turning point in your life that you never forgot?

I'd love to hear this.
(OMG, I am so intriguing. As I said, I used to say terrible things about CIs in the past, and things changed because of where I am right now... I am considering the possibility.)

 

[Hear Again]

Can you explain why you people mentioned the name's CI technology, implanted and activated with dates along?

I did not notice until now... you all stated your CI's, dates of implanted, and dates of activation. Is it necessary or is it important? You all remembered the specified dates so well. That's what intriguing me mostly at this moment. Seems like it is a biggest turning point in your life that you never forgot?

I'd love to hear this.
(OMG, I am so intriguing. As I said, I used to say terrible things about CIs in the past, and things changed because of where I am right now... I am considering the possibility.)

I participate on several CI-related e-mail lists and the use of signatures indicating CI brand, date of implantation and activation are common. Why? For one, it helps others know what CI brand a person has. When I started participating on e-mail lists, I didn't include any information about my CI brand, surgery or activation dates. As a result, I had alot of people ask me what kind of CI I had. Another reason CI users do this is so others know when they were activated. This helps experienced CI users give better advice because they know exactly where a person is in terms of their progress. (Instead of having to constantly ask a new CI user when they were activated, it's much easier to look at their signature for this information.)

Getting a CI is something one does not forget. For many people, the CI represents a life changing experience -- a time when they are able to hear speech (or music) for the first time ever or in years.

I consider my CI surgeries and activations to be the biggest turning points in my life. Thanks to my CIs, I no longer worry about my own personal safety as a totally deafblind person, nor do I struggle with alternative communication techniques that were time consuming. Because of my CIs, I'm able to talk on the phone, converse easily with others and enjoy music again. In many ways, I feel as if I've gotten my life back. Don't get me wrong...I'm not saying deafblindness (or deafness) is the end of the world. It's not. However, when I look back on how much I worried about my own personal safety and how slow some communication methods were for me to use, I'm happy my CIs have made my life easier in so many ways.

I don't think you can really understand that until you have a CI yourself. Once you hear sounds for the first time (or in a long time), you'll be filled with a sense of excitement about all of the new hearing opportunities that await you.

 

[LadySekhmet]

Hmm, what about Medicare/Medicaid? And, I was looking for the insurance plans through insurance carriers, My online research really sucked, could not find good insurances to cover CIs. Can you name few insurances via PM, or if you feel comfortable to name one here. Thank you.

Aetna Medicare paid for it fully. I only had to pay $100 for $94k surgery (for both).

Most generic Medicare and Medicaid will pay for CIs in full. You just need to find the right hospital or doctor. There are a few that do not take them because they have to "write" it off, and they won't get as much money if it was through other insurance.

Interesting... if it really huge shock, would it include counseling to adjust the shock? Anyone you know who went through the shock for those people who never spoke. I am one of them. However, I can assure you that I have a lot of hearing people are eager to help me getting through. Yeah, I made announcement that I am seriously thinking about it. They are here to support me. I really appreciate them so much. I'd like to hear your expereinces on shock adjustment.

Kind of - for someone who never ever wore hearing aids would be, I think, extremely overwhelmed with all the sounds in the world. EVERYTHING makes a sound. Even when people are walking and the jeans are rubbing against each other, sneakers squeaks, forks hitting the teeth, etc. Even *I* was slightly shocked, but I knew that it would get better over time, and many of the sounds that I was already familiar with, so it wasn't that much of a big deal when I heard it through my CI's. All I was missing was the high frequencies and the clarity that I never had in the first place. So...for example, imagine if someone was blind for 30 years of her life, and all of sudden can see again...she would be in a shock with all the visuals out there. While someone who was partially blind, or used to be able to see but then suddenly went blind....then he was cured again, and able to see...the world wouldn't be that much of a shock. Does that make sense?

The one thing that I do emphasize on is if someone has NEVER ever heard, he/she will be in a shock, but he/she must ACCEPT that it was going to happen...and don't complain about it, and decide not to use the CI anymore because it was just too much or too overwhelming. It takes TIME.

I am not against having someone who is completely deaf and never wore hearing aids or had any auditory input to get a CI, I'm just a bit wary about those people.

Obviously, you seem that you want to work really hard on it, so that's wonderful to hear.

 

[LadySekhmet]

I participate on several CI-related e-mail lists and the use of signatures indicating CI brand, date of implantation and activation are common. Why? For one, it helps others know what CI brand a person has. When I started participating on e-mail lists, I didn't include any information about my CI brand, surgery or activation dates. As a result, I had alot of people ask me what kind of CI I had. Another reason CI users do this is so others know when they were activated. This helps experienced CI users give better advice because they know exactly where a person is in terms of their progress. (Instead of having to constantly ask a new CI user when they were activated, it's much easier to look at their signature for this information.)

Getting a CI is something one does not forget. For many people, the CI represents a life changing experience -- a time when they are able to hear speech (or music) for the first time ever or in years.

I consider my CI surgeries and activations to be the biggest turning points in my life. Thanks to my CIs, I no longer worry about my own personal safety as a totally deafblind person, nor do I struggle with alternative communication techniques that were time consuming. Because of my CIs, I'm able to talk on the phone, converse easily with others and enjoy music again. In many ways, I feel as if I've gotten my life back. Don't get me wrong...I'm not saying deafblindness (or deafness) is the end of the world. It's not. However, when I look back on how much I worried about my own personal safety and how slow some communication methods were for me to use, I'm happy my CIs have made my life easier in so many ways.

I don't think you can really understand that until you have a CI yourself. Once you hear sounds for the first time (or in a long time), you'll be filled with a sense of excitement about all of the new hearing opportunities that await you.

GREAT Post! Well Said!

That's exactly how I feel....plus it helps to see who has what, Cochlear/AB/Med El. I was actually very surprised to see a lot of bilaterals here! So that's awesome...Rare club indeed.

 

[Endy]

I don't think you can really understand that until you have a CI yourself. Once you hear sounds for the first time (or in a long time), you'll be filled with a sense of excitement about all of the new hearing opportunities that await you.

Absolutely! I would not really understand that until I receive one myself.

I wish that I'd know there are people with CIs in my area, even within my 50 miles range... to meet in person and get the information, etc, etc. Many hearing friends of mine are not comfortable discussing CIs because they don't know what exactly my needs are. Rather seeing a doctor for better medical opinions. Let me clarify that I rather meet Deaf people who grew up in the world of Deaf and received CIs. It's hard for me to relate people who are hearing, that lost their hearing and did not know signs or the culture. You know what I am saying?

For Deaf people in the world of Deaf, what convinced them (for who already received CIs) to get one in despite of controversial issues and arguments. Is it due to loneliness in the hearing community or lack of deaf community or deaf support, etc? Is it due to the employment requiring hearing ability? Something "did" strike them to consider. Right now, at this moment, I am interested into people's thoughts on "starting" to think about it right before your announcement consider getting one, the consulting with people and medical people. For now, I'd like to break down into some discussion between the point to another point regarding time line.

 

[Hear Again]

Endy,

Yes, I can understand where you're coming from.

If you're interested in meeting other Deaf CI users, you might want to contact Cochlear (one manufacturer of CI). They have a volunteer advocate program which pairs experienced CI users with CI candidates in your area. In fact, I can give you the name of an excellent contact at Cochlear. If I remember correctly, she's Deaf herself. If you're interested in knowing her name, I'll be happy to send it to you under your profile. Just let me know.

 

[Endy]

I'll be happy to send it to you under your profile. Just let me know.

Excellent, please do!! Thanks!!