Stressed out over CI

Kurenai

Kurenai

New Member
Joined
Aug 2, 2013
Messages
8
Reaction score
0
Hello everyone,

I had my CI surgery in late April, and since then I have been struggling with using my CI. At first, my audiologist was very keen to keep upping the volume each session every 2 weeks and it didn't give me enough time to adjust to the noises and sounds so I eventually stopped using it altogether. My audiologist is kind of... grumpy... I guess? She is not very sympathetic to my struggles and keeps insisting that I have to keep wearing it in order to get used to it. She makes a point that if I don't, I will have wasted that money for the CI surgery... and to top it off, whenever my mother reads an article about how a CI user is extremely happy with their implant, she starts telling me I should wear it because I will hear much better than before...

Even when I wear the CI, I still need subtitles to help make out the sounds of the words being spoken, the subtitles make it easier for me to understand what has been spoken. Music is different with the CI, I hear sounds (high-pitched) that I have never heard before.

My right side, I got given a new high-powered hearing aid and I can hear much better than before. Part of me wishes I had been given the chance to have the high-powered hearing aid on my left (CI) side before I had it implanted but it wasn't discussed as an option because my deafness in that ear would have been too severe for even a high-powered hearing aid to work.

I am depressed. I have read online that it takes 6 months to a year to adjust to the sounds of the cochlear implant.... I have been using hearing aids ever since I was 2 years old... could it be possible that it takes me longer than a year to adjust to the CI...? Using the CI is completely different from the hearing aid and it overwhelms me if I wear it for too long, the different new sounds I'm not used to become too much at once and I get grumpy really fast. And this is even with the CI settings being the same as a hearing aid.

I feel like I am a lost cause, that I should not have had the surgery and that someone else who would have CI would benefit from it much better than me. I'm sick of feeling guilty and being made guilty for struggling to adjust to the CI. My audiologist points out that I'm not progressing as fast enough in my ability to adjust to the CI as her other patients.

My mother says when I was 2, I wore my hearing aids from the moment I got out of bed to when I went to bed at night. She doesn't understand why I am having so much difficulty adjusting to a CI when it will give me better hearing. She thinks I should "suck it up" and wear it all the time. Maybe that's what I need to do. :(

Should I see a local support group for CI users? Will they be understanding?
 
I'm curious. Can you see the different audiologist who knows how to adjust your mapping? As long as your not in pain then mapping needs to be corrected. I'm not an ci user. My hub is s ci user. I hope having different audiologist who understands you better. I'm sorry
 
I only have a few appointments left with her (as far as I know). I'm hoping after tomorrow's appointment, there is a month gap until I see her again in January 15, a month will give me more time to use my CI more efficiently rather than fortnightly visits of limited usage.

I did have an appointment with a different audiologist when my current one was not available, that audiologist was very nice and understanding... it made me want to cry. When that audiologist tested me and if I didn't do too well, she didn't act disappointed or impatient (like my current one would), she seems to understand that each case is individual and everyone adjusts at their own pace. I may ask to see that nice audiologist again. The nerves and anxiety of seeing my current one is too much for me to handle.
 
Everybody is different! I think if you are not adjusting after two weeks you should mention it. By then, most people have already adjusted! Ask if you can have longer to get used to the new maps? May help, also wear your CI as much you can/want.

I am a CI user, have been for 14 years and I have never watched TV without subtitles, I never have and never will. Cannot understand. Have been deaf since a newborn.
 
And then again, there are those who can never get benefit from a CI. The government agency here in the USA oversees this but does not publish the failure rate......errr, I mean the success rate.
 
Tousi said:
And then again, there are those who can never get benefit from a CI. The government agency here in the USA oversees this but does not publish the failure rate......errr, I mean the success rate.
Click to expand...

I've got two friends (twins) who have never benefited from their CI (AB implant) and still heavily rely on Lipreading and Signing.

There last speech scores were 0% and 4% for both of them with just CI and no HA. There speech scores are actually better with just wearing their HA.

They are due to have a new implant (despite the tests showing their original implants are still fully working) in the new year but have been told not to expect any improvement.
 
perhaps she is increasing your volume up too often. Yes, you do need to wear your CI more to get used to it. In order for the CI to sound better, one needs to wear it as much as they can. If the CI comes off frequently during the day, then that's not very helpful. The brain needs to get used to the signals coming in from the CI, and making sense of the signals.

Have you tried any auditory rehab to see if you are making progress? If you have an iPod or iPad, there are auditory training apps that can be downloaded (Hear Coach, ABle). There are audio books, start off with easy children's books (and read the actual book as you listen). If you are up for it, find a therapist that can help you with the auditory rehab. You haven't had your CI for a year yet, there's still plenty of time for improvements. And it couldn't hurt to find another audiologist for the MAPpings as well, if you feel your current audiologist is trying to rush you along. The CI should NOT be uncomfortable. If the programs you have now are too confusing, too loud, etc., then the audie needs to take it down a notch until you get used to the volume/programming. When you get used to it and feel ready for more tweaks, then go in for adjustments, get used to that, repeat.
 
It does sound like your regular audiologist may just be too pushy for your own pace. On the other hand, with the information you have given you have indicated that your CI is working and that you are hearing with it. It is absolutely paramount you wear your CI as much as possible. You should be wearing it from the time you wake up to the time you go to bed.

You are overwhelmed because you have not put in the time needed wearing the processor. All of those overwhelming sounds calm down with time. When I was first activated, just sitting in a "quiet" room was anything but. Typing on my keyboard, the ticking of the clock, the sound of the refrigerator hum, the cricks and creaks of the old apartment, and my own breathing were all in-my-face. It can be tiring! Believe it or not, with time all of these sounds settle down and will no longer overwhelm. This only comes from regular wear of your processor.

I remember on activation day I was overwhelmed by everything. Being out in public was too much with all of the overlapping voices. I was irritated with my Dad on the way back from the clinic because when we got in the car and I was trying to just take in their voices, the running of the car, and the road noise he went and turned on the radio on top of it all. It's really like weight training. You don't want to take on too much right off. That may be one of the issues you have with your regular audiologist. You are being forced to lift too much too soon instead of building your strength and adding weight naturally.

You must realize your hearing aid, and any hearing aid you would have put in your now implanted ear, offer limited benefit. Your CI offers you the opportunity to hear more naturally compared to what your hearing aid could do. You mention hearing things in music you've never heard before. That is key. Those are things that are supposed to be there. That you can hear these things is a good thing that you should embrace and be excited for. In time, the overall sound of music should develop to where you hear what is familiar as well as what are brand new layers to you. There were many songs that I came to realize I had been hearing wrong for years as well as many songs I could not enjoy previously that I now could with my CI due to being able to hear it as intended.

I do hope you arrive at the point where instead of being depressed or sad that you get excited about your new abilities. I think part of it is that you are holding on to what you have perceived as the norm for you with your hearing aid hearing. You will need to accept that it was only offering you a very small window into what hearing is. By opening your mind up to the experience, you'll be able to embrace the new sounds. Just start smaller as you can and appreciate/comprehend the details of the sound you hear in a quiet room and gradually expose yourself to more.

Do a lot of rehab by either using headphones, direct connecting, or connecting wirelessly (depending on what device you have.) This lets you isolate yourself from being overwhelmed and gives you control of what you listen to. Music will have the greatest clarity this way. Listen to the songs you know and take in those new details that you couldn't hear before. Listen to audiobooks and just get acclimated to the speaker. Do this everyday as an enjoyable activity rather than a chore. Your brain will make more and more sense out of it all and your visits to the audiologist will result in refinement to your programming that improves the sound quality.

Remember the weight training comparison. Right now, lifting 50 lbs might feel strenuous and near impossible. Repeated reps on a daily basis make that 50 lbs feel light and you will find you can lift heavier and even heavier weight with ease.

One final thing; your Mom means well and she is correct. She can see you have everything lined up for you to truly benefit from this. She knows that the experiences she is reading about are the ones you will eventually have. You simply do not fall in to the same category as those who have real issues with their implant. You just need to get to where she wants you to at your own pace.

Get that audiologist changed. The relationship you have with your audiologist is crucial to success. Whether she is right or wrong, it isn't working for you and is psychologically hampering your progress.

Look forward to hearing about your progress!
 
Kurenai said:
Hello everyone,

I had my CI surgery in late April, and since then I have been struggling with using my CI. At first, my audiologist was very keen to keep upping the volume each session every 2 weeks and it didn't give me enough time to adjust to the noises and sounds so I eventually stopped using it altogether. My audiologist is kind of... grumpy... I guess? She is not very sympathetic to my struggles and keeps insisting that I have to keep wearing it in order to get used to it. She makes a point that if I don't, I will have wasted that money for the CI surgery... and to top it off, whenever my mother reads an article about how a CI user is extremely happy with their implant, she starts telling me I should wear it because I will hear much better than before...

Even when I wear the CI, I still need subtitles to help make out the sounds of the words being spoken, the subtitles make it easier for me to understand what has been spoken. Music is different with the CI, I hear sounds (high-pitched) that I have never heard before.

My right side, I got given a new high-powered hearing aid and I can hear much better than before. Part of me wishes I had been given the chance to have the high-powered hearing aid on my left (CI) side before I had it implanted but it wasn't discussed as an option because my deafness in that ear would have been too severe for even a high-powered hearing aid to work.

I am depressed. I have read online that it takes 6 months to a year to adjust to the sounds of the cochlear implant.... I have been using hearing aids ever since I was 2 years old... could it be possible that it takes me longer than a year to adjust to the CI...? Using the CI is completely different from the hearing aid and it overwhelms me if I wear it for too long, the different new sounds I'm not used to become too much at once and I get grumpy really fast. And this is even with the CI settings being the same as a hearing aid.

I feel like I am a lost cause, that I should not have had the surgery and that someone else who would have CI would benefit from it much better than me. I'm sick of feeling guilty and being made guilty for struggling to adjust to the CI. My audiologist points out that I'm not progressing as fast enough in my ability to adjust to the CI as her other patients.

My mother says when I was 2, I wore my hearing aids from the moment I got out of bed to when I went to bed at night. She doesn't understand why I am having so much difficulty adjusting to a CI when it will give me better hearing. She thinks I should "suck it up" and wear it all the time. Maybe that's what I need to do. :(

Should I see a local support group for CI users? Will they be understanding?
Click to expand...

You are not alone. Your support group is here. We understand. You are doing perf e ctly well with your progress and struggles. I understand. Your endeavor will get better. You will hear fantastically well some things and dismally others. Thus is our life. Callously... get used to it. Our lives exist at polar opposites in comparison to the old hearing world. Pag clear attention to ths beautiful sounds. Do it over and over. I use spotify to reinforce the beauty. It is futile to expect your audiologist to understand. We ars different. A better different. A different pace. To each our own. Create your own pace please. Ok?
 
I feel your pain, I'm going from a world of perfect hearing to a world of CI robotic hearing and I have similar emotional swings. For me I can't seem to get a good mapping balance. If I direct connect to just about anything I do very well. Listen to ESPN every morning, talk shows I get 80+% of what they are saying, can't understand the phone callers but I do very well. As soon as I go to the MIC on the processor, it's very difficult. Much like with my HA, I "hear" everything I don't want to hear (background chaos) and nothing I want to "hear" (speech). Go into a restaurant...game over.

Part of my problem is I still have some hearing in my other ear, and my brain wants to try as hard as it can to use the information from that ear regardless of if it is valuable information or not. I think this has prevented me from adapting sooner because both sounds are foreign and different it's all confused. I now wear an ear plug in my non CI ear to force my brain to focus on the input from the CI. This seems to help, but again trying to find that mapping balance has been a process. Because I came from the hearing world, I completely understand the types of sounds I am hearing through my CI. I completely understand the sounds I want to hear, versus the sounds I don't want to hear, but trying to translate that native human understanding of sound into feedback an audiologist can use to translate into proper mapping adjustments...that is very difficult. I really wish I could just be my own "DJ". I also completely understand the sounds that I am missing, won't ever hear again...while grateful for my CI, it's difficult accept this dramatic difference.

Hang in there, keep practicing, keep trying to move forward, and try to accept your situation. It's hard I know, but if the better you can control your acceptance the better you can control your emotional state. My emotional swings have been damped over time, but I still have my moments where I break down a bit.
 
I would love to know what these audiologists all mean by "get used to" or "Adjust to" a CI. most of these idiots think CI can still give normal hearing....
 
soutthpaw said:
I would love to know what these audiologists all mean by "get used to" or "Adjust to" a CI. most of these idiots think CI can still give normal hearing....
Click to expand...

They mean the brain learns to process the amount of sound as well as the stimulation. I explained this in my last post within this thread. The audie in question in this thread may be a bit too aggressive, but she is otherwise correct. Every CI user who has stuck with using their processor and rehabbing has experienced this change for themselves and that would be the majority.

It's exactly the same as being in a dark room for years that is suddenly flooded with light. Your eyes cannot handle the brightness or make sense of the details within the shapes and colors around you....not right away. They need to adjust. This is why Audie's start you out very conservatively and gradually increase your current level as you learn to tolerate it. This only happens with consistent use.

A CI provides more normal hearing over a HA and is the closest you can get to normal hearing today in the absence of normal hearing.
 
BleedingPurist said:
They mean the brain learns to process the amount of sound as well as the stimulation. I explained this in my last post within this thread. The audie in question in this thread may be a bit too aggressive, but she is otherwise correct. Every CI user who has stuck with using their processor and rehabbing has experienced this change for themselves and that would be the majority.

It's exactly the same as being in a dark room for years that is suddenly flooded with light. Your eyes cannot handle the brightness or make sense of the details within the shapes and colors around you....not right away. They need to adjust. This is why Audie's start you out very conservatively and gradually increase your current level as you learn to tolerate it. This only happens with consistent use.

A CI provides more normal hearing over a HA and is the closest you can get to normal hearing today in the absence of normal hearing.
Click to expand...
I absolutely disagree with your last statement. no device stimulating a couple dozen locations can replicate 20,000 hair cells that are at least somewhat functional.
 
soutthpaw said:
I absolutely disagree with your last statement. no device stimulating a couple dozen locations can replicate 20,000 hair cells that are at least somewhat functional.
Click to expand...

Except with a hearing aid, that is not what is happening. It is screaming at damaged hair cells, many that are barely functional and can't be compensated for by volume. By time you have a severe loss you've lost far too many hair cells for a hearing aid to offer up near normal sound. There are too many gaps.

Nearly every late or post-lingually deafened person I know feels that their CI is much closer to normal than a hearing aid ever was. Whether you have a few dozen points or 120 points of stimulation, it all comes together to provide much better hearing in terms of definition, detail, and range.
 
heavily rely on Lipreading and Signing
Click to expand...
OT, but why are people so obessed with thinking that lipreading is a "crutch"? Even HEARING people lipread!
 
soutthpaw said:
I would love to know what these audiologists all mean by "get used to" or "Adjust to" a CI. most of these idiots think CI can still give normal hearing....
Click to expand...
Quite honestly, if an audiologist told me that I'd sum up my options and walk out. I don't think they're idiots. They push an expensive product and want us to think it will get better in time. Sometimes it does, sometimes it doesn't. It just makes me a bit p.o.'d.

I hate the robotic noise and I don't know that I'll ever get used to it.
 
soutthpaw said:
I absolutely disagree with your last statement. no device stimulating a couple dozen locations can replicate 20,000 hair cells that are at least somewhat functional.
Click to expand...
Again, I agree with you. A CI sends sounds (sound processing not hearing) through your brain. A HA goes the ear hearing route. Sound processing is not close to normal hearing and I've had closer to normal for many years then late deafened.
 
NYNY said:
Quite honestly, if an audiologist told me that I'd sum up my options and walk out. I don't think they're idiots. They push an expensive product and want us to think it will get better in time. Sometimes it does, sometimes it doesn't. It just makes me a bit p.o.'d.

I hate the robotic noise and I don't know that I'll ever get used to it.
Click to expand...

How long have you been activated for? I noticed you had a physician who did not do a good job with your implant procedure.

Again, your audiologist doesn't tell you this because they want you to think it will get better, it's because they, and long time users, know it's a fact. Audiologists have observed it over and over for years and long time users have experienced it for themselves. It's not a hearing aid where what you hear when turning it on is what you're going to hear moving forward.

The average developmental period to reach peak potential is 2 years after activation, though for some it can be almost immediate.
 
Sometimes I wonder if people are afraid that their stock options will become less valuable if they refuse to paint a certain product in anything less then absolutely perfect terms. We get it....you like the CI... People will buy and get it, even if it's not pushed in terms that sound like they come from a PR release....The CI has varied results....Yes, there are folks who are "almost hearing" with CI....there are also people who don't get as much benefit and every and anything in between
 
BleedingPurist said:
How long have you been activated for? I noticed you had a physician who did not do a good job with your implant procedure.

Again, your audiologist doesn't tell you this because they want you to think it will get better, it's because they, and long time users, know it's a fact. Audiologists have observed it over and over for years and long time users have experienced it for themselves. It's not a hearing aid where what you hear when turning it on is what you're going to hear moving forward.

The average developmental period to reach peak potential is 2 years after activation, though for some it can be almost immediate.
Click to expand...
BleedingPurist: I'm at 1.5 years of activation and I've read it could take years longer to get used to it. I'm totally aware that this is a process (I instituted process control in various depts. when I worked and it was not instantaneous, so I better know this) and I know it's not an instant fix and takes work.

In the meantime, I have two issues that are driving me batty. One is the increase in the tinnitus and I know enough about this. The second is finding out what was done during surgery to see if it can be modified I'd like to be able to: a) wear the implant behind my ear b) wear my glasses at the same time.

I went to a known ENT at a good hospital. I interviewed cochlear implant groups in some recommended places. The ENT couldn't see what my head was like until he went in. I'm not blaming the end result on him. However, I am blaming the lack of response to my question on the ENT. I will escalate this and get the surgery report, so maybe I can deduce why he did what he did.

Your responses are very precise and logical. I appreciate your sharing your knowledge.
 
Back
Top