Hi & Some Questions for CI Users

[Grendel]

Hey everyone, this board is just what I was looking for. I am a 21 year old girl with severe to profound bilateral loss. I do wear a digital HA in my right ear only. This is the ear that has a little bit of residual hearing. I have had no hearing in my left ear since I was 6.

During a visit to my audiologist today we discussed the possibility of getting a CI in the future... it is not a "MUST" in my case as my HA works well. I can hear music, one on one conversations, most general noises. But I cannot talk on the phone unless it's someone I know well, I cannot hear group conversations or participate in lectures/meetings without notes.

Seems that if I implanted my left ear I would have nothing to lose. But I do have some questions:

1) Is CI worth it for someone who can still make good use of a HA?
2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.
3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?
4) Girls: do you have to wear your hair down all the time if you want to keep the processor discreetly hidden?
5) Does it make sense to wait about 5 years to see if technologies improve? Keep in mind that I am not in desperate need of an implant right now by any means.

Sorry that I seem so vain about the appearance of the implant... I just love how unobstrusive my little HA has been. Doesn't help that I have never seen anyone with a CI in my life!!!

 

[deafskeptic]

Welcome to Alldeaf! I hope you can find a lot of useful information here!

You'll need to go to a CI center to determine if you're a candidate.

My audiologist wanted me to implant my left ear. That was my better ear but she said I'm more likely to have success if I have the better ear implanted.

When I wore my hearing aid, I could not speak on the phone but I could hear music and a lot of environmental sounds. I also could carry on a conversation on a one to one basis. Although I was able to make good use of my hearing aid, I had problems with recruitment and a lot of sounds would make my ear ring.

It's better to wear the processer most of the time but I like having moments of silence as well.

I'm a woman and I keep my hair short. No one has asked me about my ci other than the time I went to the local Hearing Loss group. Even when I went to the silent dinner no one commented on my CI even though it was visible.

Personally, I think it's better to get implanted now. CIs are way better than hearing aids. Why wait forever for improved techology when you can hear better now?

As for you getting implanted, that's up to you. You don't have to get implanted if you don't want to as this is a personal matter for you.

I've asked my audiologist if i could adjust my hearing aid for my right ear. it was worn over my left ear and I've not worn anything over my right ear since I was 14. I'm forty now. My audi says she wants me to focus on my left ear so I'm not wearing anything over my right ear. You don't have to wear two devices.

 

[highlands]

I am in a smilar situation with Grendel... will read new posts sorry I can't contribute much :|

 

[Grendel]

Just did some research and it seems they usu. recommend implanting the ear with less hearing and using a hearing aid on the other side. Hmm... anyone tried this approach?

 

[cdmeggers]

We're both similar with the left ear being completely deaf and right ear still having some residual hearing that a hearing aid works. I have a digital hearing aid, but it's still not enough. I'm at the point that I really depend on visual support to understand what people are saying, and forget the phone. I even have a hard time understanding my mom on the phone these days. I'm going to be evaluated for a cochlear implant on the 17th of this month and I can't wait! Hopefully I am a candidate, but if not, that's ok too.. At least I would KNOW by then, and figure out what to do to hear better.

 

[ismi]

Just did some research and it seems they usu. recommend implanting the ear with less hearing and using a hearing aid on the other side. Hmm... anyone tried this approach?

I'm doing this now. I'm supposed to spend some time each day with just the implant, since it's fairly new (5 weeks post-activation). I wasn't sure how well it'd work at first, but as I'm starting to adjust to the implant, I'm finding that I like the way it balances with the hearing aid.

Some people end up deciding that the CI is so much better, there's no point in wearing a hearing aid anymore, even if they don't go bilateral. But a number of people wear a CI and a HA on opposite ears. (Actually, I think there was a recent thread on this here.)

As for your other questions:

1) Is CI worth it for someone who can still make good use of a HA?

See above.

2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.

You wouldn't need to; a lot of people don't. You'd probably want to wear it while you learn to hear with the CI, so you'd remain functional, and maybe you'd get used to having two devices, but then you could choose to take it off if you still wanted to.

3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?

You need to leave it on most of the day when you're learning to use the CI - otherwise, your brain just won't adjust. But eventually, yes, you can take it on and leave it off. That said, I usually take it off in the late evening, even though it's fairly new, and I haven't had any problems yet.

Your other two questions, I don't have an answer for.

 

[vallee]

Hey everyone, this board is just what I was looking for. I am a 21 year old girl with severe to profound bilateral loss. I do wear a digital HA in my right ear only. This is the ear that has a little bit of residual hearing. I have had no hearing in my left ear since I was 6.

During a visit to my audiologist today we discussed the possibility of getting a CI in the future... it is not a "MUST" in my case as my HA works well. I can hear music, one on one conversations, most general noises. But I cannot talk on the phone unless it's someone I know well, I cannot hear group conversations or participate in lectures/meetings without notes.

Seems that if I implanted my left ear I would have nothing to lose. But I do have some questions:

1) Is CI worth it for someone who can still make good use of a HA?
2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.
3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?
4) Girls: do you have to wear your hair down all the time if you want to keep the processor discreetly hidden?
5) Does it make sense to wait about 5 years to see if technologies improve? Keep in mind that I am not in desperate need of an implant right now by any means.

Sorry that I seem so vain about the appearance of the implant... I just love how unobstrusive my little HA has been. Doesn't help that I have never seen anyone with a CI in my life!!!

It is an option to look into. I started about 5 years before I was implanted. My right ear was in okay shape, but I implanted both. As a personal choice, I'm glad I did. the sound is so different that it helps with comprehension. Even my left ear has so much comprehension.

I have worn my hair both. I wear it and it covers it up. It does not matter to me. I do it because I am a teacher and want my students to focus on me not my processor. I find others can not handle it. I wear it in a ponytail on te weekends. I think my ha showed more than the CI. Good luck and research and more research.

 

[R2D2]

Just did some research and it seems they usu. recommend implanting the ear with less hearing and using a hearing aid on the other side. Hmm... anyone tried this approach?

I think you will find that most surgeons you consult will be in favour of doing this in your case. This is because with most implantations, the residual hearing is destroyed forever and there is no return to hearing aids.

You are in a similar position to how I was back in 2005. I did reasonably well with aids but like you the phone was very difficult, large group conversations were difficult. However, functioned very well on a face to face, small group level. So I didn't want to take the risk with a CI. I have to say, I also wasn't very well informed about it at that time either. I used to think it was brain surgery.

Anyway that all changed when I lost my residual hearing in my favoured ear suddenly in one day and in just a few seconds. Wearing a hearing aid became painful, made me feel dizzy and was impossible.

It took 9 months from the time I lost my hearing to the time I got implanted with my first CI. In the confusion, I wasted time waiting for appointments with useless local ENT specialists etc. I had also developed severe tinnitus resulting from the loss as well, so I had that to cope with as well.

Anyway the CI for me, has exceeded my expectations. I can now hear sounds that were beyond me before and I didn't think I had missed much with hearing aids. Now I can communicate much more easily on the phone, I can understand considerably more speech without need of visual cues and function better in group conversation, however I still find it difficult in very noisy conditions. So I feel I have basically shifted from profound level to moderate hard of hearing.
I've just had my second surgery on the other ear

It's great you are doing your research now. If you do lose your hearing in the future then you can act faster than me.

The other thing I noticed from my research is that CI companies is that they are good with providing upgrades and backward compatibility to people with previous models of CIs. You'll need to make sure you have adequate insurance coverage though.

 

[contradica]

Hey everyone, this board is just what I was looking for. I am a 21 year old girl with severe to profound bilateral loss. I do wear a digital HA in my right ear only. This is the ear that has a little bit of residual hearing. I have had no hearing in my left ear since I was 6.

During a visit to my audiologist today we discussed the possibility of getting a CI in the future... it is not a "MUST" in my case as my HA works well. I can hear music, one on one conversations, most general noises. But I cannot talk on the phone unless it's someone I know well, I cannot hear group conversations or participate in lectures/meetings without notes.

Seems that if I implanted my left ear I would have nothing to lose. But I do have some questions:

1) Is CI worth it for someone who can still make good use of a HA?
2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.
3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?
4) Girls: do you have to wear your hair down all the time if you want to keep the processor discreetly hidden?
5) Does it make sense to wait about 5 years to see if technologies improve? Keep in mind that I am not in desperate need of an implant right now by any means.

Sorry that I seem so vain about the appearance of the implant... I just love how unobstrusive my little HA has been. Doesn't help that I have never seen anyone with a CI in my life!!!

Hey Grendel,
I can relate you in more ways then one. I am not much older then you are, I am a ripe age of 27 I had severe to profound loss in both ears that was diagnosed at the age of 3. When I was 12, I lost all the residual hearing in my left ear. Hearing aids brought on this darth vadar voice and then it just went downhill from there. I currently wear a hearing aid in my right which was severe-profound is now profound. I use to be able to talk on the phone and fair well in a group conversations providing I could read everyone lips. Since my right ear went downhill, all that was taken away from me. I could still make music, providing it had bass to it. I can pick up sounds here and there but it was nothing like it us to be. I was not happy losing the little bits and pieces of my life that I took for granted. So I started researching other options. It was hard because because I didn't know anyone else that was deaf, let alone have a CI. My vanity played a big part in getting a CI. I was such a pain to my surgeon. I want to be able to hear. I need to talk on the phone, I had to take a risk and do this.

To answer your questions

1) Is CI worth it for someone who can still make good use of a HA?
In my opinion from what you described to me, I would not be happy with just hearing that little bit since I heard so much more in the past If you have tried different hearing aids to see how you like them and you are at a dead end, then maybe you should consider the possibility of researching the CI.

2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.
I just had the surgery and when I get activated, the audiologist wants me to leave my hearing aid out for 2 months to get my left ear use to hearing sounds. After that, I can put the aid back in. I am so use to wearing just one device as well

3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?
I would imagine it would be the same thing with a hearing aid. If I don't feel like hearing something or just dont want to wear it, off it comes

4) Girls: do you have to wear your hair down all the time if you want to keep the processor discreetly hidden?
Ask me this in a couple weeks My activation is on September 17th

5) Does it make sense to wait about 5 years to see if technologies improve? Keep in mind that I am not in desperate need of an implant right now by any means.
That is up to you. I could have easily said, I am going to wait for the stem cell and that is 10-15 years maybe down the line. I will be an old lady and I would have missed so much in life. The unknown is anyone game.

 

[R2D2]

I just realised I didn't answer your question about hair up or down. I wear my hair up because it's more comfortable that way. I do not notice any difference in reactions to wearing a CI versus a hearing aid. But then I'm not the type that consciously looks for a reaction anyway. They look pretty similar, although the behind the ear speech processor on the CI is currently a bit bigger but they are coming down in sizes. The Cochlear Freedom has the option of a mini speech processor, which is more similar in size to BTE hearing aid. You can also pick different colours to match your hair or your outfit e.g. black, brown, blue, silver or the dreaded beige.

To be honest and I hope you don't take this the wrong way, I do think it's less stressful not to feel embarrassed about your deafness and also if you demonstrate self confidence and happiness with self, then people are naturally attracted to you. I've found that people are really very good on the whole and the vast majority do not treat me any differently except in being conscious that they don't mumble etc.

 

[Grendel]

Wow, I got such a great response so fast . You guys are wonderful! It's really comforting that all of us have similar problems and we're all doing just fine, whether we choose to use hearing aids or CI's or even nothing at all. I don't know any HOH/deaf people, and it sometimes wears down on me.

I'm going to see a surgeon for a consultation type thing, and maybe will assess my candidacy. If I do decide to get the CI it will probably be another year at minimum before I actually get the surgery, but it is good to start researching now.

Oh, and GOOD LUCK Contradica with your hook-up. I hope the CI gives you all that you missed and more.

 

[rick48]

Grendel,

I have a 20 year old daughter who has a ci, so here goes:

1. She has had a ci for over 17 years with no HA but there are people here who can give you their experiences but at the end of the day, its your decision.

2. Same answer but there may be reasons why you may not be able to implant one ear as opposed to the other so that is soemthing you need to address with your implant center.

3. Don't have to wear it all the time. My daughter takes it off to go to sleep and usually puts it on after breakfast or after doing her hair and make-up.

4. She has shoulder length hair so it is not visible at all when her hair is down but she pulls her hair back and up when playing sports, going to the beach or if its really hot and humid. You don't seem vain at all and I understand where you are coming from.

5. Your decision but the technology is always improving and you can always upgrade the external parts. There is talk of a fully implanted device with no external parts but who knows when that will be available.

Good luck,
Rick

 

[sr171soars]

...
1) Is CI worth it for someone who can still make good use of a HA?

Sure but if you can still make good use of a HA, the begs the question whether or not they let you get one. I guess it depends on your actual hearing loss. Bottom line...if you qualify, that strictly depends on you.

2) If I got the left ear implanted would I still have to wear a HA in my right ear to keep the ear stimulated? I really don't care for the idea of having two devices on... I've always just worn one.

No, it is up to you.

3) Do you have to wear the processor all the time? Is it okay to take it off when you're just relaxing at home or whenever you simply don't feel like wearing it?

No, but the more you wear it the better off you will be. I take mine off about 9:30 at night and I usually go to bed around 11:00 or so. Obviously, I don't sleep with it on. I turn it on after I get to work (6:30) and that would be around 7:30. Otherwise, it is on all the time.

4) Girls: do you have to wear your hair down all the time if you want to keep the processor discreetly hidden?

I dunno...I'm not a girl. It depends on you.

5) Does it make sense to wait about 5 years to see if technologies improve? Keep in mind that I am not in desperate need of an implant right now by any means.

It depends on your situation. In your case, it might make a lot of sense. In my case, I had to do something as quickly as possible. I couldn't wait for whatever better came along. I'm very glad I did and I still have possibilities for my left side in the future. As you can tell, I'm in no rush to be bilateral yet.

Sorry that I seem so vain about the appearance of the implant... I just love how unobstrusive my little HA has been. Doesn't help that I have never seen anyone with a CI in my life!!!

I'm a guy with extremely short hair and I could care less if other people see it. It is more of matter how you handle it and interact with people that makes them at ease.

Hope that helps...

 

[deafdyke]

Hi Grendal!
I think I read somewhere that they are giving a little more wiggle room for implant canidacy, if the person has a "dead" ear. However that might be just for the really really good insurances. A lot of insurances will give you a lot of grief b/c you still have a lot of response with HA.
What's the percentage of words that you can hear with your HA?
That might be a good point to start the debate about CI or not.
CI is good...........but it might not be for you. Just saying. There does seem to be a bit of the "OMG latest technology" fever with some people (exactly like the digital craze from a few years ago) That said, bilateral hearing can be amazing. It also might mean the difference in sound between ITE aids and BTE aids for a more hoh person. I know that they are more open to implantation if there's a problem such as severe recruitment or tinituas.

But I cannot talk on the phone unless it's someone I know well, I cannot hear group conversations or participate in lectures/meetings without notes.

Then again, neither can a lot of other hoh folks. You're doing the right thing, sending out feelers. I for one think that CI giving bilateral hearing to those with "dead" ears, is awesome. However, get evaluated for canidacy first!

 

[contradica]

Wow, I got such a great response so fast . You guys are wonderful! It's really comforting that all of us have similar problems and we're all doing just fine, whether we choose to use hearing aids or CI's or even nothing at all. I don't know any HOH/deaf people, and it sometimes wears down on me.

I'm going to see a surgeon for a consultation type thing, and maybe will assess my candidacy. If I do decide to get the CI it will probably be another year at minimum before I actually get the surgery, but it is good to start researching now.

Oh, and GOOD LUCK Contradica with your hook-up. I hope the CI gives you all that you missed and more.

It is hard being the only one that you know of that has a hearing problem. It was not until I started researching cochlear implants until I realized there is tons of other people out there just like me!!! I wish I knew about this a long time ago. I grew up mainstreamed orally all through school. My knowledge of sign language is nil. It certainly helped me accept who I was.

 

[deafdyke]

Oh and don't fuss about how visable the CI is. Although I only have hearing aids, I remember how self conscious I was wearing them. Hearing devices are NOT as noticable as you may have been trained to think....I measn sheesh.....its not like they are ear horns or those giant body worn aids.
Oh, and I gotta say that I think the CI alone vs CI with hearing aids debate is really an indivdaul thing. Just as someone with one audiogram can respond well to hearing aids, while another doesn't, so as it is with the CI plus hearing aids debate.

 

[cdmeggers]

about how visible the CI might be.. I don't care if people notice my hearing aid or not, so I'm not going to care if people take notice of the CI if I get one... Ever since I was a little kid I was always wanting to show off... Especially in the 3rd grade when I got new purple hearing aids (I was the only one with colored hearing aids at the deaf school at the time, so I was a brat and bragged).... I used to put sticker earrings onto my hearing aid to decorate them and all.... And I'm sure I'll be doing the same with the CI. I even get bright colored molds now (for years I wore flesh colored molds cause the school district audiologist thought I had an allergy... but I don't).

I don't know why but I like it when people notice my hearing aid, earmold or whatever. My HA's not so noticeable as it's brown and blends in with my hair, and I wish I had gotten a different colored HA... but oh well.

And BTW, I'm also 21, turning 22 on the 19th.

 

[rick48]

about how visible the CI might be.. I don't care if people notice my hearing aid or not, so I'm not going to care if people take notice of the CI if I get one... Ever since I was a little kid I was always wanting to show off... Especially in the 3rd grade when I got new purple hearing aids (I was the only one with colored hearing aids at the deaf school at the time, so I was a brat and bragged).... I used to put sticker earrings onto my hearing aid to decorate them and all.... And I'm sure I'll be doing the same with the CI. I even get bright colored molds now (for years I wore flesh colored molds cause the school district audiologist thought I had an allergy... but I don't).

I don't know why but I like it when people notice my hearing aid, earmold or whatever. My HA's not so noticeable as it's brown and blends in with my hair, and I wish I had gotten a different colored HA... but oh well.

And BTW, I'm also 21, turning 22 on the 19th.

good luck with the evaluation and Happy b-day, its the same day as my youngest daughter's!
Rick

 

[R2D2]

about how visible the CI might be.. I don't care if people notice my hearing aid or not, so I'm not going to care if people take notice of the CI if I get one... Ever since I was a little kid I was always wanting to show off... Especially in the 3rd grade when I got new purple hearing aids (I was the only one with colored hearing aids at the deaf school at the time, so I was a brat and bragged).... I used to put sticker earrings onto my hearing aid to decorate them and all.... And I'm sure I'll be doing the same with the CI. I even get bright colored molds now (for years I wore flesh colored molds cause the school district audiologist thought I had an allergy... but I don't).

I don't know why but I like it when people notice my hearing aid, earmold or whatever. My HA's not so noticeable as it's brown and blends in with my hair, and I wish I had gotten a different colored HA... but oh well.

And BTW, I'm also 21, turning 22 on the 19th.

Purple hearing aids?? LOL! Did you ever take a photo of them? I'd love to see what they looked like

 

[cdmeggers]

Purple hearing aids?? LOL! Did you ever take a photo of them? I'd love to see what they looked like

YES purple! I'll have to take a picture later as I am currently at work. Purple hearing aids, bright green or orange earmolds... Yeah, I was quite the colorful kid. And you could see through the casing of the HAs too, I thought they were so awesome.

and thanks Rick. And that's cool about your daughter and the birthday we share.