Sooo confused about whether or not to get a CI

[kimpossible]

I'll start by saying i've lost my hearing gradually over the years. Here's a sort of history of my hearing loss and how it was initiated if you need to refer to it but if not just skip to the next paragraph

- diagnosed with brain tumour at 4, surgically removed at 5, underwent radiation treatment which initiated hearing loss
- first clear signs of hearing loss occurred around 3rd grade:
- - - * right ear had a Severe-Profound loss instantly
- - - * had an FM system for the left ear (mild hearing loss at the time)
- hearing in left ear deteriorated because of sensorineural AND conductive hearing loss (middle ear infections)
- obtained a BTE in grade 5 (probably about 50 dBs at this point)
- no problems hearing/conversing with BTE until 8th grade
- received BAHA surgery (Bone Anchored Hearing Aid) in grade 10 because the BTE ear mold wasn't letting enough air into my ear and worsened the infections
- hearing loss deteriorated to the point where I had to wear both the BAHA and BTE at the same time (on the same ear; google BAHA if you don't know what i'm talking about! =P)
- had a tympanomastoidectomy (operation to remove cyst in my ear that was causing infections/eating away at my ear!) in grade 11; hearing loss had been deteriorating because of the cyst already, but the operation alone brought me down to about 90 dB
- received right ear BTE shortly afterwards (minimal help, & poor speech discrimination in that ear, but good for a volume boost)
- cochlear implant assessment in November 2006 - determined that i'd be a borderline CI candidate for one in my right ear (not the left since my speech discrimination was "very good" for sentences without lipreading, but only at several dBs higher than normal conversation level) and also my loss is somewhere like, 85ish dB - right ear, 110 dB - left ear



Phew. so anyway, here's the thing: I had a CI assessment a year ago to determine whether I'd be a good candidate for a CI. I decided maybe I'd want to go ahead with it as I'd heard good things about speech clarity and such. My main problem is that even Phonak's strongest hearing aid that's on the market currently (although I know there's this new sort of awesome technology coming out apparently) I don't get the desired amount of amplification, and even though my speech discrimination is a LOT better than many people who use BTEs, it's still not as good as I wish it were. (but let me stop myself there and just clarify that I understand that CI doesn't give perfect hearing..!)

when I first had the assessment I didn't know much about CIs, like how some people had said they heard "Donald Duck speech" and the like. My mom read something about not being able to hear music. I have a friend with a CI and she says she listens to some rock, so I don't know, what's the deal on this? I know it's generally different to describe what hearing with a CI is like but I'd still appreciate some input

I was supposed to have an appointment about 2 months ago with a CI specialist.. person... but when I found out about how allegedly weird the sounds were when a person gets a CI, I told her to cancel, screw it, i'll stick with the BTE.

when I came here and read some more clear descriptions of people's experiences with the CI, i started to change my mind and may want to reschedule that appointment (or possibly another assessment since it's been a year!). but i'm really unsure about this whole thing. Everything I've read about candidacy says that a good CI candidate is someone who doesn't get enough help from hearing aids, blah blah blah. But I think I get a fairly decent amount of help; I can talk on the phone and such, my biggest issue is with amplification but I can't seem to get any more powerful hearing aids...


1. is there anyone here who has experienced wearing a BTE and a CI at the same time (or does that even work for some people?)

2. are there any people who have gotten a cochlear implant after having lost their hearing gradually (ie. you were hearing or HoH at one point, then deaf, then you got a CI!) and have experienced use of a hearing aid prior, that can tell me their story?

3. essentially how good is a CI when it comes to conversing over lots of background noise?

4. how well do you follow a 3-person conversation (3 as in, including yourself) without lipreading?? how well can you discriminate speech without lipreading?

 

[highlands]

well, if you can talk over a standart phone without any significant difficulty then you are not a candidate for a CI.. I have bilateral loss at 92 decibels and cannot keep a succesful phone conversation..

of course, there are many other factors but telephone use may be a leading one

 

[R2D2]

Hi Kim,

It's good that you are researching this. If you have a progressive loss then even though you do not qualify for a CI right now it does sound like it could be a good possibility for you in the future. I agree with Highlands that if you are able to use the phone well at the moment and do well with speech testing without lipreading, then you are doing pretty well for someone with a hearing loss.

Yes - I've had both a BTE and the CI and the CI for me wins hands down in terms of clarity and amplification (not that a CI amplifies but you know what I mean). Sounds are more rich and distinct, particularly high frequency sounds. I now hear sounds that I could not with my BTE such as a bird's wings flapping in take off.

The Donald Duck speech is common in the first few days or weeks after activation but in the majority of cases it disappears and sounds are quite natural within a few weeks/ months. The reason it happens is because you start off with a crude map (program) and as your sound tolerance is built up over time, your dynamic range and therefore the quality of the sounds you hear can be improved. If there are constraints though that prevent the ability to increase the dynamic range e.g. intolerance of sounds then the quality will not improve. This is why to some degree there is variability with results.

With a lot of background noise I have programs on my CI to help me focus on the speaker and cut out the background noise. However, I think a group conversation in lots of background noise (say a train station) would still be quite hard. I don't seem to be quite as tired anymore though from noisy situations, like I used to with hearing aids. I used to go home a lot and turn them off whereas I don't do that any more with CIs.

Music - a lot of us here love music with our CIs, so it's by no means across the board that CI users cannot appreciate music. It's a hard question to answer because something that pleases me may not please you. It seems to me that the manufacturers are currently putting a lot of emphasis into program development that enhance music appreciation, which is great.

My ability to follow speech without lipreading has improved dramatically to the point that I can use the phone despite being a lifelong non user before that. I've never had a 3 way conversation without lipreading though as in a natural situation, two people would be present and you'd be looking at them. Are you talking about as with a speakerphone?
Some people with CIs still do use lipreading because that helps them a lot and they are still happy with their results. I guess it depends on where you are coming from.

So I can't really recommend a CI for you because no one here is qualified to do that but from what you do say, it sounds like that at some point you, particularly if you lose further hearing, you will probably benefit very well from it. Previous auditory experience is a significant factor in how well one does with a CI. However, you'd have to go through a proper evaluation to see if a specialist would agree.

 

[jag]

1. is there anyone here who has experienced wearing a BTE and a CI at the same time (or does that even work for some people?)

2. are there any people who have gotten a cochlear implant after having lost their hearing gradually (ie. you were hearing or HoH at one point, then deaf, then you got a CI!) and have experienced use of a hearing aid prior, that can tell me their story?

3. essentially how good is a CI when it comes to conversing over lots of background noise?

4. how well do you follow a 3-person conversation (3 as in, including yourself) without lipreading?? how well can you discriminate speech without lipreading?

1. I used both when first activated. Left ear CI , right HA. My expericence I felt that the HA helped me adjust to CI. and the CI clarified what was coming trhough the HA. But this is probably an individual thing.

2. I lost my hearing gradually. It had gotten to the point where I felt the HA wasn't givingwhat I wanted. I did not qualify outright for a CI. I did get an exception based on poor hearing when noise was introduced. I had private insurance and was told no gov. insurance program would have granted such an exception (at that time, I doubt it's changed but you never know)

3. The background noise thing is better then a HA but it will depend on how far along you are in using the CI for speech. Some learn to hear speech right away (me) some take time (varies per individual) to hear and understand it. (the norm I believe) You of course would have your own personal journey which would be different from any one elses. But hearing in background noise does improve over time.

4. I do quite well in most sitations with more then 2 people but it depends on how noisy the room or area is and where the person is situated. 3 person conversations aren't a hugh problem in most situations.

 

[Cheri]

kimpossible--

Whatever you decided is your own personal choice, don't let anyone decide for you, the decision is yours and wish you the best of luck with your decision.

 

[Liebling:-)))]

Interesting post... Mainly important is follow your heart what you really want... and listen the pros/cons from the doctor/professor.

Best of good luck...

Those one, I want to quote and would like to share what I know from a guy, I met at 5 weeks spa resort clinic last year.

- diagnosed with brain tumour at 4, surgically removed at 5, underwent radiation treatment which initiated hearing loss

He lost his hearing to brain tumor when he was 20 years old. He is HA user for years and learn sign language... He decided for want to have CI at few years ago but his application is being reject because it's risk. (He was told that he is an incurable illness when he was 20 years old but he is 48 years old now ). He is very positive his life and do if he is healthy. He don't give up and want to have CI but his application is still being reject. I am total surprised after read your post here. I will remember your post if I meet someone like I met guy one day.

 

[SCBassist]

You have a pretty complicated situation that an ENT specialist must look into further for you. You mention a history of ear infections, and that can play a significant role in determining if a CI is appropriate for you. Those who do qualify have NO audible perception from HAs regardless of DB loss, and a healthy cochlea with functional neaural structures within your inner ear.

As for the CI experience, as you have read from our posts, it's an exciting time you won't forget, although, brutally honest, getting accustomed to a CI in the first few weeks will be great and frustrating at times, but there will be obstacles you will learn from (such as equipment performance, humidity, etc) and new sounds your mind will eventually start interpreting it correctly. It differs with everyone, but they eventually reach similar hearing or processor performance thresholds at varying time intervals. So much to cover, but HAs and CIs both have their own advantages. Although CIs will generally enable you to hear clearly, HAs (from my experience) still have the edge when it comes to background noise. This is because your natural hearing is still involved, with a CI, the sounds are artificially processed. The CI can be programmed in various ways to come around this, it will depend on what will work best from the way you perceive sound (Like it loud? Prefer less sensitivity to distant sounds? etc).

I play bass, and it sounds as natural as it possibly can be, but everything has a beginning. It didn't sound pleasant at first, but our minds do adapt, eventually perceiving the sound correctly. That process is quick for some, and slow for others, and for those with unfortunate limitations, may not perceive certain frequencies or sound dynamics at a certain point. You can have your candidacy determined by an ENT specialist, make sure they specialize in CI implantation, many don't do this. Hope this info helped you.

 

[sr171soars]

...

3. essentially how good is a CI when it comes to conversing over lots of background noise?

4. how well do you follow a 3-person conversation (3 as in, including yourself) without lipreading?? how well can you discriminate speech without lipreading?

To answer your last two questions...

For #3, That depends on the person and how well they are able to perceive speech with a CI. The better they are able to hear under normal circumstances...the better they can hear over background noise. I don't have too much trouble with it but it depends on the type of background noise.

For #4, I basically have given up lipreading and prefer to focus on listening and therefore handle a 3 or more way conversation pretty well. Of course, the faster and more furious the byplay/conversation the harder it is to keep up! Even for that, I catch so much more than I ever could with a HA.

 

[deafskeptic]

To answer your last two questions...

For #3, That depends on the person and how well they are able to perceive speech with a CI. The better they are able to hear under normal circumstances...the better they can hear over background noise. I don't have too much trouble with it but it depends on the type of background noise.

For most people that's prolly true. I have ADD so it's more difficult for me to deal with distractions and background noises but my implant has a wonderful feature to deal with such a situation and I use it for such situations.

[/quote]
For #4, I basically have given up lipreading and prefer to focus on listening and therefore handle a 3 or more way conversation pretty well. Of course, the faster and more furious the byplay/conversation the harder it is to keep up! Even for that, I catch so much more than I ever could with a HA.[/QUOTE]

Nods. I find I don't I don't lipread as often as I used to in the past. It's much less exhausting that way. My face doesn't ache like it used to in the past after a day of lipreading. When we had the family reunion, I was amazed that I could keep up with 4 people at once.

 

[ismi]

1. is there anyone here who has experienced wearing a BTE and a CI at the same time (or does that even work for some people?)

This is what I'm doing now - a Harmony CI on the right, and a Phonak Savia on the left. It helps a lot - the Savia helps my brain make sense of what it's hearing, but the CI supplies a lot more information to play with, if that makes sense to you. The audiologists I've spoken to say that some people - about half - continue to use a hearing aid indefinitely, while others abandon it eventually (because it interferes with the sound from the implant, or it's just not enough sound to be worthwhile, or whatever). I'm about 6 weeks post-activation, so it remains to be seen how that'll go for me.

2. are there any people who have gotten a cochlear implant after having lost their hearing gradually (ie. you were hearing or HoH at one point, then deaf, then you got a CI!) and have experienced use of a hearing aid prior, that can tell me their story?

I was born hearing, and became hard of hearing a few years later due to a genetic disorder. Looking back, my parents say they were noticing that they had to speak loudly to me (and I had to be looking at them) when I was about 3 years old, but we didn't recognize the significance of this, AFAIK, and I had enough hearing to learn German at the age of 4 without hearing aids. I got hearing aids when I was 5, and my hearing continued to drop until by middle school, I was sort of 'riding the curve' - losing hearing at a rate that just kept up with the most powerful aids on the market. About 2 years ago (I'm 20 now), I got a bad ear infection that turned into mastoiditis, and lasted for about 5 months. Between that and the mastoidectomy that eventually cured the surgery, the hearing in both ears (but especially the right one) took a major hit, and I started looking at CIs about a year later. I had the surgery about six months after I started being evaluated. If you want more details, feel free to PM me. BTW, being able to use a telephone, especially with your better year, doesn't mean you're not qualified - I did, and I still failed the hearing tests by a decent margin.

3. essentially how good is a CI when it comes to conversing over lots of background noise?

I can't do it yet with just the CI, but this sort of situation is much easier with my hearing aid and CI together than it was even a few years ago (i.e., before the mastoiditis). I'm told that most people like us - that is, with progressive losses - do pretty well with that once they've gotten used to the implant (which can take anywhere from a few weeks to a few years - I'm operating on the assumption that it'll be about a year before I really see how good it'll get).

4. how well do you follow a 3-person conversation (3 as in, including yourself) without lipreading?? how well can you discriminate speech without lipreading?

Better than before, just like above. In a quiet environment, I can do this with no more effort than it took with my hearing aids, and sometimes less. In a noisy environment, I still have trouble, and I do read lips whenever I can. But I'm hearing better than I was before; the therapist I was working with recently said that I now have to learn to filter out background noise more, but once that happens, things should be much easier. That said, I've surprised myself recently by overhearing a 3-way conversation in another room and being able to follow it pretty easily *despite* background noise.

People do sound a bit weird right now, although I don't know if "donald duck" is quite how I'd put it. It has been getting better with impressive speed, though, so I think that'll change. Music is another thing you asked about - at the moment, listening to music through my implant just annoys me. I tend to just use my hearing aid to listen to music (with a DAI cable or my FM), but using both at the same time is also pretty good. Right now, I can get the rhythm and lyrics to music, but pitch and melody is only there if I know the song already - which is interesting, given that I've done some psychoacoustic testing that says I do very well at distinguishing pitch with the CI (even compared with a hearing person, probably the result of musical and vocal training I've had in the past). I'm going to sound like a broken record but ... that's also improving, and I suspect it'll be pretty dang good in a few months to a year.

Like I said above, feel free to PM me if you want more details on any of this.

 

[kimpossible]

Ok this answers my questions pretty well! I'm not entirely sure about some posts since I think part of my post was overlooked -- my candidacy has already been determined by my ENT; the thing I didn't do is meet up & discuss more about CIs with a CI specialist, and what I'm doing now is what they further recommend: talking to CI users about their experiences. But I very much appreciate everything that's been said so far. My reason for posting is that even after my ENT recommended that I get a CI for my right ear (ie. the one with bad speech discrimination) I still have reason to believe that I'm not really a candidate based on what I've read about CIs; docs can only know so much about how you experience things and I don't think anyone should put 100% of their trust in their hands.

And thanks especially, jag and ismi!! (and ismi your case sounds a lot like mine, I think by what you said it sounds like we both had a mastoidectomy around the same time. your experience surrounding the situation sounds a lot like mine, as well. I was 16 when I had it and I'm 18 now - the CI assessment took place about a year after the surgery but it's also been a year since the CI assessment)

PS talking on the phone is never a breeze, just to clarify! and my speech discrimination is at about 65-70%, but in just one ear, with sentences only (one-word is probably 20-30% ish) and that's as good as it gets. I'm not talking about a CI for that ear though but for the right ear, for which the speech discrimination is like, 0-10%. which is why I was specifically asking people who have used a BTE and a CI at the same time

 

[Audiofuzzy]

Ok this answers my questions pretty well! I'm not entirely sure about some posts since I think part of my post was overlooked -- my candidacy has already been determined by my ENT; the thing I didn't do is meet up & discuss more about CIs with a CI specialist, and what I'm doing now is what they further recommend: talking to CI users about their experiences. But I very much appreciate everything that's been said so far. My reason for posting is that even after my ENT recommended that I get a CI for my right ear (ie. the one with bad speech discrimination) I still have reason to believe that I'm not really a candidate based on what I've read about CIs; docs can only know so much about how you experience things and I don't think anyone should put 100% of their trust in their hands.

And thanks especially, jag and ismi!! (and ismi your case sounds a lot like mine, I think by what you said it sounds like we both had a mastoidectomy around the same time. your experience surrounding the situation sounds a lot like mine, as well. I was 16 when I had it and I'm 18 now - the CI assessment took place about a year after the surgery but it's also been a year since the CI assessment)

PS talking on the phone is never a breeze, just to clarify! and my speech discrimination is at about 65-70%, but in just one ear, with sentences only (one-word is probably 20-30% ish) and that's as good as it gets. I'm not talking about a CI for that ear though but for the right ear, for which the speech discrimination is like, 0-10%. which is why I was specifically asking people who have used a BTE and a CI at the same time

I think it eventually comes down to this- how much/ bad you want to hear?

Fuzzy

 

[SkullChick]

hmm well what about getting ci on other ear and use bte on ear that you're doing well on/ that way you're not losing anything? and have back up if you didnt like the result. i used to be mild-moderate hoh too and progressed to 95 db loss and im gonna keep that ear for bte and other ear wih 105 db loss to get implanted so i dont have anything to lose

 

[contradica]

1. is there anyone here who has experienced wearing a BTE and a CI at the same time (or does that even work for some people?)

I currently wear a CI in my left ear which has been useless to me for 15 years and a BTE in my right ear. According to my latest tests results, my CI has surpassed my right ear which was my good ear. It works for me but I have heard of some cases of where the CI's clarity interferes with the amplification of the hearing aid.

2. are there any people who have gotten a cochlear implant after having lost their hearing gradually (ie. you were hearing or HoH at one point, then deaf, then you got a CI!) and have experienced use of a hearing aid prior, that can tell me their story?

I was diagnosed with moderate/severe hearing loss when I was four years old. I was a sickly child, they are not sure why I lost my hearing. I was fitted with hearing aids. When I was 12, I lost the remaining hearing in my left ear and was no longer able to use a hearing aid. I've continued to this day wear a hearing aid in my right but my hearing is progressively getting worst. I was able to use the phone every and do this and that. However in the past couple of years I've suffered from severe episodes of tinnitus which would muffle everything to the point where I couldn't comprehend anything. The final straw for was when I had surgery to fix a deviated septum and I woke up completely and utterly deaf. My hearing in my right came back but I lost ten decibels which puts me in the profound category and I can no longer talk on the phone. That was a major part of my life and I wasn't going to give it up so easily. So I got implanted I have been activated since 9-17-07 and it has been great.

3. essentially how good is a CI when it comes to conversing over lots of background noise?

With my noise program, I went out to dinner in a busy restaurant and I had no problem conversing with people at my table and I was still able to pick up environmental sounds. I will be attending a party this weekend with all sorts of music and people and strange Halloween sounds. I will let you know how I make out there

4. how well do you follow a 3-person conversation (3 as in, including yourself) without lipreading?? how well can you discriminate speech without lipreading?

I still have to lip read but I can tell who is talking. I can pick up some words here and there but I have only been activated 5 weeks and I have already surpassed the tests results on my "good" right ear. I can see me going bilateral in the future to be honest.

As far as the donald duck sounds, to me they sounded like munchkins doing illegal drugs but anyway, they lasted only a couple weeks for me and with each mapping disappeared into thin air. So far it sounds great. My CI brings clarity to the words while my HA brings balance with what little hearing is left in there.

If you are unsure, then continue researching forums and blogs, contact the companies and ask for information regarding their devices. It is a big decision. Each individual experience will be different.

 

[Audiofuzzy]

With my noise program, I went out to dinner in a busy restaurant and I had no problem conversing with people at my table and I was still able to pick up environmental sounds. I will be attending a party this weekend with all sorts of music and people and strange Halloween sounds. I will let you know how I make out there

that sounds great... I have huge problem with background noise..

Fuzzy

 

[lovezebras]

i did a project and 2/3 ci companies will send an info packet i think cochlear america-nucleus and makers of the harmony i think..i havent gotten one of them but the cochlear america one had great info and a dvd!

 

[kimpossible]

basically Audiofuzzy, I want to be able to hear things without having to ask for 3+ repeats. I don't lipread - I do need to look at a person's face, but I always make eye contact. at one point my BTE was like, a godsend and I picked up everything but just for a couple of years.

also I have a MAJOR issue with feedback - I can never get an earmold to fit, or at least, my current audiologist can't seem to make me one because whenever she puts the little cotton thingies in it hurts like hell (my ear's pretty messed) and the earmolds never fit properly or they make my ear sore and it gets even more infected. So not only can I not get a proper fitting earmold but I also can't turn up my hearing aid all the way because of the feedback that this generates.

hmm well what about getting ci on other ear and use bte on ear that you're doing well on/ that way you're not losing anything?

yeah that's kind of why I'm asking BTE/CI users =P but anyway, thanks for your suggestion =)

contradica, I LOL'd at the munchkins thing. THANK YOU so much for answering my questions, too! =)

so now, I guess the thing is I'm not really desperate but I would like some improvement; and getting a CI does establish that at least eventually I won't have as much to worry about in terms of losing my hearing. Because nowadays all I'm doing is switching from BTE to BTE every few months jumping around whatever's on the market that's the most powerful and it gets annoying to experience so many changes and differences in my hearing.

 

[R2D2]

also I have a MAJOR issue with feedback - I can never get an earmold to fit, or at least, my current audiologist can't seem to make me one because whenever she puts the little cotton thingies in it hurts like hell (my ear's pretty messed) and the earmolds never fit properly or they make my ear sore and it gets even more infected. So not only can I not get a proper fitting earmold but I also can't turn up my hearing aid all the way because of the feedback that this generates.

Yeah - it's probably not the earmold in your case but the fact that you have a powerful hearing aid. The more powerful the hearing aid, the more feedback you have to expect with that. That was one of things that prompted me to get the second implant. The HA in that ear gave bad feedback and then I'd have to turn it down to get rid of it but then I wouldn't hear anything. Even at the max volume I wasn't happy with the volume. Experiments with other brands didn't get rid of the feedback even though some of them had some anti feedback programs.

That's one thing I don't miss with my CI. It's great not having people tap you on the shoulder and saying "excuse me, your hearing aid is buzzing."

 

[kimpossible]

Yeah - it's probably not the earmold in your case but the fact that you have a powerful hearing aid. The more powerful the hearing aid, the more feedback you have to expect with that. That was one of things that prompted me to get the second implant. The HA in that ear gave bad feedback and then I'd have to turn it down to get rid of it but then I wouldn't hear anything. Even at the max volume I wasn't happy with the volume. Experiments with other brands didn't get rid of the feedback even though some of them had some anti feedback programs.

That's one thing I don't miss with my CI. It's great not having people tap you on the shoulder and saying "excuse me, your hearing aid is buzzing."

uggh yeah, my audiologist keeps trying to convince me that it's the earmold that's the problem; but my earmold at least SEEMS to have a perfect fit. Although I have to admit, the area of the earmold that prevents feedback the most, is the one that consistently causes soreness/scars my skin. but I'm kind of agreeing with you, you can only have so much amplification without feedback.

 

[highlands]

If you are not sure what to expect from a CI... then the rest remains blurry.
A CI decision requires accepting pros and cons.. there are cons and they may be serious for some.. and one has to be realistic hopes on a CI