I have question for you CIers

SkullChick

SkullChick

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I have question for you people with CI, I want to get fact straight if you don't mind answering my question it will help me so much. Thanks
1) do you experience any kind of sensation of CI being on? (Turned on for first time and/or in normal day) like pain, pulsating feeling, headache, dizzy from hearing low pitch noise like man's voice? Do your brain vibrate or makes eyes move or weird feeling?
Because my audiologist told me if I can't handle hearing aid I can't handle ci at all cuz its 10 times worse than what I'm experiencing with hearing aid (pain in ear drum and inside ear if I go any louder than number 2 volume, dizzy everytime I hear man voice or any low pitch noise. if more than one noise is happening I feel off like unbalanced and the speech sound get super garbled like woman voice sound like morse code and man voice sound like evironment sound I can't makes sense of ANYTHING
Is it true that ci is 10 times worse? Cuz I'm getting worried that I'm having rough time with hearing aid right now. I want to hear without pain or if hear loud low pitch noise come of nowhere and knock me off balance and almost fall from dizziness
:-(
 
SkullChick said:
I have question for you people with CI, I want to get fact straight if you don't mind answering my question it will help me so much. Thanks
1) do you experience any kind of sensation of CI being on? (Turned on for first time and/or in normal day) like pain, pulsating feeling, headache, dizzy from hearing low pitch noise like man's voice? Do your brain vibrate or makes eyes move or weird feeling?
Because my audiologist told me if I can't handle hearing aid I can't handle ci at all cuz its 10 times worse than what I'm experiencing with hearing aid (pain in ear drum and inside ear if I go any louder than number 2 volume, dizzy everytime I hear man voice or any low pitch noise. if more than one noise is happening I feel off like unbalanced and the speech sound get super garbled like woman voice sound like morse code and man voice sound like evironment sound I can't makes sense of ANYTHING
Is it true that ci is 10 times worse? Cuz I'm getting worried that I'm having rough time with hearing aid right now. I want to hear without pain or if hear loud low pitch noise come of nowhere and knock me off balance and almost fall from dizziness
:-(
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CI is 100 better!

There was no pain when they turned me on. At first I did not hear anything, then slowly a beep and I told her when I could handle it. Finally when all 4 sets of 4 tones were set, then she turned me on. Sound sounded natural, crisp, clear, and painless. It did sound like robotic sounds for the first week or so.

I had a lot of problems with HA, I had migraines and pain. Everyday it was painful. Everyday it hurt.

I would ask another audie for assistance. You have said a lot about this audie with the ear molds and other. It might be time to ask for a second opinion.

I hope you find your answers.
 
authentic said:
Be proud to be deaf.
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Please don't disrespect my choice for wanting to hear. I respect you people for not wanting CI and proud to be deaf and live in complete silence so please respect my choice as I do for your's.
 
Skullchick,

If you have questions, talk to another Audi that works with CI's. I think this Audi is steering you wrong. You should have 0 zero vibrations with a CI. It does not use a speaker to amplify sound. As you have probably read, it uses electrical signals directly to the nerve.

Yes, I had dizziness with my last hearing aid just because it was so darn loud and the speaker vibrations were causing the problems. I also had tremendous difficulty in hearing anything clear enough to understand.

I can say that I LOVE my CI. It was the best decision I have ever made. Although I was hearing before loosing my hearing and getting the ability to hear back with the CI, I can say what I hear is almost identical to what I could hear before.

Some have very good response to a CI like myself and others don't get as much benefit from one like a few on this board.

Please do your homework. Be 110% comfortable with your decision. As I was told, have low expectations and high hopes but always remember, it may not be as good as some say and it does take a lot of work to make it work as well as it can.

My initial response to your posting is that the audi you are talking to may not fully understand how a CI works or maybe they are not explaining it well enough.

Good luck in your search.
Steve
 
live in complete silence
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I am 110% deaf, but I don't feel that way.
Sure, I do respect your opinion, but my comment is based on my opinion.
 
My audiologist has told me that when the CI is turned on for the first time, you're going to hear a LOT of noise all around you that is going to drive you crazy. She warned me against turning off my hearing aids when I'm exposed to noise that bothers me, because if the noise bothers me now with the hearing aid, then it'll be worse with the CI. Since that appointment, I've been forcing myself to leave my hearing aid alone, and deal with the noise I hear at work and such, learning how to deal with it.

I don't know it's like this for EVERYONE, but that was what I was told. And she's been a CI audiologist for YEARS and YEARS so I trust her judgment on this. She's had patients that have gotten CIs but haven't been able to get comfortable with them because of all the "noise" they hear and cannot deal with, same noise they couldn't deal with before with hearing aids.
 
SkullChick said:
I have question for you people with CI, I want to get fact straight if you don't mind answering my question it will help me so much. Thanks
1) do you experience any kind of sensation of CI being on? (Turned on for first time and/or in normal day) like pain, pulsating feeling, headache, dizzy from hearing low pitch noise like man's voice? Do your brain vibrate or makes eyes move or weird feeling?
Because my audiologist told me if I can't handle hearing aid I can't handle ci at all cuz its 10 times worse than what I'm experiencing with hearing aid (pain in ear drum and inside ear if I go any louder than number 2 volume, dizzy everytime I hear man voice or any low pitch noise. if more than one noise is happening I feel off like unbalanced and the speech sound get super garbled like woman voice sound like morse code and man voice sound like evironment sound I can't makes sense of ANYTHING
Is it true that ci is 10 times worse? Cuz I'm getting worried that I'm having rough time with hearing aid right now. I want to hear without pain or if hear loud low pitch noise come of nowhere and knock me off balance and almost fall from dizziness
:-(
Click to expand...

I think it depends on why the pain and discomfort with hearing aids is occurring.

I experienced pain and discomfort with hearing aids after having a sudden loss but that was due to the damaged ear nerves which could not cope. However, if you have grown up not being used to sound input and then started wearing hearing aids later in life, then the pain and discomfort may be happening because your brain cannot adjust to sound. The key to looking at this is to ask yourself if you have always experienced pain with hearing aids. If no, then there is a good chance the CI will help. If yes, then your audiologist's concerns might be something to think about.

It would help if you could give us some more information about your history - was there ever a point where you did well with aids or were you a later wearer who has not done that well with them?
 
Good questions, Skullchick. I am interested also.

From Northwestern University: Frequently asked questions

What does a patient hear when the microphone is first turned on?
Results vary from hearing buzzing noises to hearing and understanding speech. Most people report that speech is not clear on the first day; speech can sound robotic or like Daffy Duck. These perceptions change very quickly as the brain becomes accustomed to its new input source. How quickly sound becomes “natural” through an implant varies greatly from person-to-person. The brain learns to match these new auditory sensations with auditory memories and combines that with visual cues. Patience, persistence and practice are necessary and will provide great rewards!

---

From ListenUp: People's experiences with CI (seems maybe pro-CI to me)

---

From HearingLossWeb: Cochlear Implant Stories and Experiences

I haven't read all but I think I don't find many balanced and useful discussions. If I do I will post.
 
I remember when I heard things for the first time with my CI. There was no pain and no ringing in my ear like there was with my HA. I did have some dizziness and pain but i think that was from the surgery itself and not the implant.

I heard my dad coughing and it came out very beepy. Voices sounded mechanical to me. I wasn't sure if they sounded robotic to me like my audi asked. You see, I've never heard robots so I can't answer that question. I remember hearing music for the first time and it came out sounding like static. That depressed me as I had missed listening to music but I couldn't cuz recruiment was so bad. Voices and environmental sounds started to sound normal within a day or two.
 
SkullChick said:
I have question for you people with CI, I want to get fact straight if you don't mind answering my question it will help me so much. Thanks
1) do you experience any kind of sensation of CI being on? (Turned on for first time and/or in normal day) like pain, pulsating feeling, headache, dizzy from hearing low pitch noise like man's voice? Do your brain vibrate or makes eyes move or weird feeling?
Because my audiologist told me if I can't handle hearing aid I can't handle ci at all cuz its 10 times worse than what I'm experiencing with hearing aid (pain in ear drum and inside ear if I go any louder than number 2 volume, dizzy everytime I hear man voice or any low pitch noise. if more than one noise is happening I feel off like unbalanced and the speech sound get super garbled like woman voice sound like morse code and man voice sound like evironment sound I can't makes sense of ANYTHING
Is it true that ci is 10 times worse? Cuz I'm getting worried that I'm having rough time with hearing aid right now. I want to hear without pain or if hear loud low pitch noise come of nowhere and knock me off balance and almost fall from dizziness
:-(
Click to expand...

When I had my HA I actually had a hard time turning them up enough. I percieved them as to loud and turned them down because they really bothered me. I should have done much better with them, even according to my CI audiologist. (some people are like me and have difficulty using the HA for some reason...even tho the testing shows i should have benefited greatly from HA's )

Anyway if you havn't been tested and talked to a CI audiologist I would say make an appointment and do so. THe audiologist who I bought my HA's from also was the person who I had do my testing for those HA's. I was sent back to his office by the implant team to have the HA's adjusted before testing again. When I said I was looking into it he gave me a lecture on how the implant was different and blah blah blah. He did adjust the HA's and they didn't work much better for me in the next round of testing so now I have a CI and it is much improvment and my ear drum is no longer assualted by all that loud noise. :)

Good luck.
 
cdmeggers said:
My audiologist has told me that when the CI is turned on for the first time, you're going to hear a LOT of noise all around you that is going to drive you crazy. She warned me against turning off my hearing aids when I'm exposed to noise that bothers me, because if the noise bothers me now with the hearing aid, then it'll be worse with the CI. Since that appointment, I've been forcing myself to leave my hearing aid alone, and deal with the noise I hear at work and such, learning how to deal with it.

I don't know it's like this for EVERYONE, but that was what I was told. And she's been a CI audiologist for YEARS and YEARS so I trust her judgment on this. She's had patients that have gotten CIs but haven't been able to get comfortable with them because of all the "noise" they hear and cannot deal with, same noise they couldn't deal with before with hearing aids.
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One reason I got the CI is the HA's were so darn noisy. Noise in and of itself is not good. (for me :) ) It's probably one reason I did so poorly with the HA's. Louder was not better.

I can honestly say that even at it's noisiest the CI has not bothered me in the same way as the HA's did. Plus with the Freedom I can bump down the sens. and still hear better then I ever did with a HA.

My audi is actually willing to work with me as an individual, I like that. She is also willing to set things in the program to meet my needs, not what the experts in the field say things should be like. And I'm happy with that. My goal was to understand speech more easilly. I achieved that from the start. I don't need to hear every little noise, I had the last two electrodes turned off just because I couldn't tolerate the sound, but the sounds I did hear at first never got to the overwhelming point because I had the smart sounds, until my brain began to do so itself. The brain is amazing and the results can be amazing. but really in my case overloading my brain with excess noise wasn't necessary and thankfully I didn't have to be overloaded. :)

Good luck with your journey whatever it may be, every individual has different needs when getting a CI and imo need audiologists who are willing to work with them to meet those needs without being overwhelmed.
 
R2D2 said:
I think it depends on why the pain and discomfort with hearing aids is occurring.

I experienced pain and discomfort with hearing aids after having a sudden loss but that was due to the damaged ear nerves which could not cope. However, if you have grown up not being used to sound input and then started wearing hearing aids later in life, then the pain and discomfort may be happening because your brain cannot adjust to sound. The key to looking at this is to ask yourself if you have always experienced pain with hearing aids. If no, then there is a good chance the CI will help. If yes, then your audiologist's concerns might be something to think about.

It would help if you could give us some more information about your history - was there ever a point where you did well with aids or were you a later wearer who has not done that well with them?
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I born hard of hearing with 50 db loss in one ear and other ear severe loss of 90 and I wore hearing aid since I was baby and stopped around 16-17 years old because I can't hear anything with my hearing aid (sudden loss to 100 decibel for both ear) I did very well with hearing aid understood people speech behind my back no problem only couldn't understand what radio or phone said though but speech I was totally relied on listening that why I can't read lips at all till I started to learn how to lip read soon after sudden loss so I got fitting for hearing aid last week and I experience those which I've NEVER experienced any of those problem before so it might be same what you have (damaged nerves) I know my audiologist seem all off but she's only one that my surgeon work with and she work with ci and other one is 2 hours away and I'll have to meet other surgeon so I decided to stick with her till she say no or if she actually say yes (I'll be shocked) then if she didn't do good job on mapping then I'll seek other audiologist that work with ci.
 
When I first got it turned on they made sure it was not too loud for me, like start low til i felt its too loud then they will stop there and set it in 3 programs so I can adjust over time when i got use to them. Also when it first turned on i could hear beep then my parents saying can you hear me. Although the first week of my mom voice sounded like daffy duck but it went away after awhile. But it doesn't hurt and cause vibration since it is being heard from the cochlear itself not by the object like the hearing aids. hmm there is some weird electrical feelings when i kinda move the headpiece over the implant but that is probably something to do with the magnets and shortly goes away when i put it on. hmm Also i used to get really bad headaches from it so i took off one magnetic pieces (they put like 1.5 of it on my headpiece because it wouldn't stay on my head with 1. (I have really thick hair lol)) but i took off the one piece and only have like 1 or something like that (not sure if its 1.5 or whatever) and it helped alot and I haven't had alot of headaches related to the ci.

Hopes that helps.
good luck
 
SkullChick said:
I born hard of hearing with 50 db loss in one ear and other ear severe loss of 90 and I wore hearing aid since I was baby and stopped around 16-17 years old because I can't hear anything with my hearing aid (sudden loss to 100 decibel for both ear) I did very well with hearing aid understood people speech behind my back no problem only couldn't understand what radio or phone said though but speech I was totally relied on listening that why I can't read lips at all till I started to learn how to lip read soon after sudden loss so I got fitting for hearing aid last week and I experience those which I've NEVER experienced any of those problem before so it might be same what you have (damaged nerves) I know my audiologist seem all off but she's only one that my surgeon work with and she work with ci and other one is 2 hours away and I'll have to meet other surgeon so I decided to stick with her till she say no or if she actually say yes (I'll be shocked) then if she didn't do good job on mapping then I'll seek other audiologist that work with ci.
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It does sound like it could be recruitment, which is a common by product of sudden loss. If it is the case, then you'll be pleased to know that the CI bypasses that problem.

Yeah, just from all the other stuff that you've told us about this audie it sounds like she isn't particularly good or organised. It's a shame you're stuck with her as 2 hours is a long way to travel to see another one.

It's good on the other hand that you have a support board here to sound off to and question what she says to you. Just play the game and wait for her to say "yes".
 
I have CI and when I first got it turn on it sound so funny for a while then it became so much clearer with the CI and I starting to hear so much of so many different sounds. Very Clear because I was born hoh still consider as deaf. So I was losing my hearing in my right hear so I went ahead to get CI, it was worth it for me. I get to hear music again and hear my daughter being born when she cried, and no regret. :)
 
The only thing that I experienced was headaches and tinnitus. When a hearing aid was put in my left ear it sounded awful and it hurt. Nothing else was affected that way. I get a twitch in my eye with my CI when the volume is turned up but that took a couple mappings for the twitch to happen. At the time of activation, it was just noises.
 
Contradica,

I have also experienced the twitch but it was a neck muscle. I told my Audi and she turned the volume down so I was not getting hit with so much current. This high current also makes the batteries last a much shorter amount of time. The speed at which the CI hits the nerves also plays a major part in how long the batteries last.

I also twitch a little when I touch the electrical plug in the wall. A CI is no different. It sends electrical current to the nerve. If the amperage is to high (very high volume), you may feel it in the way of a twitch. If I can remember correctly, mine centered around electrode 19 and 17. We turned down the max output on those two electrode but also lowered 21, 20, 18, 16 and 15 so the sounds still sounded right. After the C and T levels were programmed, the Audi turned down the max output again.

Noises sound normal to me and I like it. I currently run 1800/sec but have a 3500/sec if I want to use it or per say re-train myself to hear. When I was learning to use the CI, I used 3500/sec most of the time as I found it easier to learn how to hear again.

Steve
 
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