Cochlear implants, do they help?

stephaniep

Active Member
While I can still hear sound, my understanding of speech seems to be totally gone. My Audiologist gave me the loudest hearing Aid possible, and it doesn't help. I can still hear the sound and turn up the instrument till they are loud, but can't make out what anyone is saying to me? So she has referred me to the Cochlear Clinic, appt is at the end of Nov . If not understanding speech, yet hearing sound, how will cochlear implants even help me, can someone advise if it will help a young senior? I got an information sheet in the mail, and it's a lot of appts that are a distance away, of what testing I need before I get the news if I am even a candidate? I am a little worried, hope there isn't more going on, as to why I have this problem and can't hear anymore?
 

LoveBlue

Well-Known Member
I had progressive hearing loss for about 20 years. When it reached the point that a hearing aid was no longer useful in my worse ear, I got a CI in that ear and went from about 4% speech discrimination to 80+% speech discrimination. About a year later my other ear progressed to where it also needed a CI and that ear had the same great results. I believe my success was based on two things - late deafened and had worn hearing aids up to the time I got the CI, therefore continued stimulation of the hearing nerve even if the hearing wasn't that great.

CIs "replace" the hair cells, which are what alllow us to understand speech. If your hearing nerves are still healthy, which they probably are, then a CI will allow you to understand speech again, though it will sound funny at first because the sound is electronically generated.

Our brains are amazing things and will adjust to make things sound "normal" again. When I got my first one, the water running out of the faucet sounded like buzzing. I told my brain that it was water running and instantly that's what I heard.

It will take a lot of aural rehab to "relearn" to understand words, but it's well worth it. I started off, in addition to specific aural rehab apps/websites, with reading a book while listening to it via a audiobook.

BTW, I'm a young senior. I was 61 when I got my first one.
 

stephaniep

Active Member
Thank you, counting down the days till the 26th when I have my first appointment. I realise that I will have to get some testing prior to see if I am even a candidate? I have been wearing hearing Aids for a few years now, one ear is totally gone it seems,, and the other is poor as well,but I can hear some sound out of the one , but I cannot understand when someone is talking to me. Update: The Audiologist has recently adjusted my hearing aids, and I can pick up sound a little better in the one ear, and there is the odd person I can actually make out some words, not all,, but a few? Funny how my hearing loss progresses, when I go into these spells of losing hearing, it's not overnight, but it seems over a few short months, it gets worse and worse and I realise hey, I can't hear this or that anymore? I use to have trouble with female voices, Thought they were all mumbling, but I could hear male base voices, but now it's the male voices as well, and fast speech, most people talk too fast. . I don't know if this is a fact or if I perceive them as talking too fast, possibly because I miss the conversation?
 

LoveBlue

Well-Known Member
You will be tested with words and sentences. Do NOT guess at either. If you don't understand any word(s), let the audiologist know, don't guess. It's easy for us to try to guess at words when doing the sentence test since we have some context if we heard some of the words. What I do is say "The quick brown something something fence" rather than "The quick brown ?fox? ran under the fence"

I've read where others have had balance tests done. I did not have that.

If you pass (meaning you failed to understand) the tests then you'll get instructions either before seeing the surgeon or after seeing him/her. Usually they want to do a CT Scan. Some may want an MRI.
 

Limited02

Member
IIRC, I went from 32% speech recognition with HA's to 97% speech recognition a cochlear and HA. Similar to you, just getting a louder HA didn't help because I could still "hear" I just couldn't "understand." Now, I not only can understand far more clearly, but I also hear many sounds I've never heard before.
 

stephaniep

Active Member
Tomorrow is the big day and I'm so nervous. Say a little prayer. So far, I've been reading some info they sent me. I did find out that the implants are more successful when a person can still hear a little on their own, so it is recommended that a person not wait until they are totally deaf. The last ENT I seen a year ago, told me not to come back until I couldn't hear anything anymore with my HA's. She was wrong!
Without Hearing Aids I am deaf, I cannot even hear the sound of my own voice when speaking. While I do pick up the odd words here and there, with HA's., I'm at the point that most of it is non understandable sounds in R ear with my HA's but my left ear is almost totally shot and HA doesn't help it.. The waiting List here at present is 12 months after tests are done and approved to go ahead,, so where will I be in that time? Quite concerned about that? If I can get the one, it will be the most wonderful thing to hear more than I can hear now.
 

stephaniep

Active Member
Thank you LoveBlue and Limited2. From my understanding I will be having a balance test later if I pass all the first tests with the Audiologist which are to be done with hearing Aids and without to see if I am even eligible for the implants..
I will try to be as exact as I can be when they ask me questions. I have a bad habit pretending I can hear, sometimes even answering a person with what I thought I heard, in hopes that my answer was right. This never works for long, because if they keep talking, I trip up right after.

Limited2, thank you for sharing, that is a large increase in speech recognition to 97% That is so hopeful.
 

LoveBlue

Well-Known Member
Thank you LoveBlue and Limited2. From my understanding I will be having a balance test later if I pass all the first tests with the Audiologist which are to be done with hearing Aids and without to see if I am even eligible for the implants..
I will try to be as exact as I can be when they ask me questions. I have a bad habit pretending I can hear, sometimes even answering a person with what I thought I heard, in hopes that my answer was right. This never works for long, because if they keep talking, I trip up right after.

Limited2, thank you for sharing, that is a large increase in speech recognition to 97% That is so hopeful.
Bolded - we all do that. I still do that with my CIs sometimes, like in noisy places.

Good luck with your testing - hope you fail the hearing tests (which means you qualify) :)
 

stephaniep

Active Member
Thank you. Well, I did fail the speech tests miserably so badly that it surprised even me. I knew it was bad, but not quite as bad as the tests showed? She's telling me both my ears are pretty much the same (both have dropped significantly.. She said my R one is even a little worse and I was kind of stating my case, that my R one is better but when I got home and tested my ears individually with one hearing Aid in and the other one out, she was right. My R ear took a dive but I didn't even know when it happened? I cannot understand when anyone is talking, it's all fast garble to me.
I got an appt slip in the mail today for my CT scan, in mid Jan. and I hope and pray that my hearing loss isn't connected to a serious issue. I'm so nervous, so hope you don't mind if I come here more often when I need to alleviate my fears? Thanks and virtual hugs.
 

stephaniep

Active Member
Thank you, I don't know what to think, I don't know if I can do this anymore, I find the appointments frustrating. My husband comes along to help me communicate but I can't make out sound, and they don't seem to make an effort to communicate with me, and here I'm sitting in the middle of the room , while all backs are turned speaking with my husband about what they want to do, and I feel like a non person, a number, an object they are speaking about. You would think the Clinic of otolaryngology would be able to communicate with a deaf person better, but I felt they treated me like they've never had anyone as deaf as me. No one at the desk lifted a pen to write what they wanted from me, not a one . Finally I was led to a room and a nurse wrote on the Erase board asking if I could contact my husband to come in. Seems like they don't have the time to see just how much I can communicate?
I had my head CT scan today, but I didn't know if I was to hold my breath or not, but it's over and done with now. When I arrived alone as they requested, and were asking me questions, well, sorry I can't hear enough to understand you, so they lean in to my ear and yell louder and louder, I still can't make out what they are saying, then they took my Hearing Aids away before they did the test, and then I could
hear nothing but silence. I have a vestibular test booked for beginning of Feb and have another follow up with the O Clinic. Almost got my vaccinations up to date. and have yet to go for pre-op but at this point, they still don't know what is causing the hearing loss, so if surgery will take place, it remains to be seen? Thank you for listening to my vent.
 
Thank you, I don't know what to think, I don't know if I can do this anymore, I find the appointments frustrating. My husband comes along to help me communicate but I can't make out sound, and they don't seem to make an effort to communicate with me, and here I'm sitting in the middle of the room , while all backs are turned speaking with my husband about what they want to do, and I feel like a non person, a number, an object they are speaking about. You would think the Clinic of otolaryngology would be able to communicate with a deaf person better, but I felt they treated me like they've never had anyone as deaf as me. No one at the desk lifted a pen to write what they wanted from me, not a one . Finally I was led to a room and a nurse wrote on the Erase board asking if I could contact my husband to come in. Seems like they don't have the time to see just how much I can communicate?
I had my head CT scan today, but I didn't know if I was to hold my breath or not, but it's over and done with now. When I arrived alone as they requested, and were asking me questions, well, sorry I can't hear enough to understand you, so they lean in to my ear and yell louder and louder, I still can't make out what they are saying, then they took my Hearing Aids away before they did the test, and then I could
hear nothing but silence. I have a vestibular test booked for beginning of Feb and have another follow up with the O Clinic. Almost got my vaccinations up to date. and have yet to go for pre-op but at this point, they still don't know what is causing the hearing loss, so if surgery will take place, it remains to be seen? Thank you for listening to my vent.
Iam going through the exact same thing with the doctors not willing to communicate with me , and the worst part is that my mother doesn't even speak enough English to understand medical terms , so Iam in the dark here with absolutely no information about my hearing loss after all these appointments , been a year or so , Iam so sorry about that ,I totally understand how bad it feels
I hope your CT scan goes well , I was terrified too when they did it thinking I have a brain tumors or somthing , very bad days when I remember , I couldn't even sleep because I was that worried

nevertheless Iam happy for you that you would get a CI , it's an absolute dream for me , keep us updated and vent as much as you want
 

zephren

Well-Known Member
Thank you, I don't know what to think, I don't know if I can do this anymore, I find the appointments frustrating. My husband comes along to help me communicate but I can't make out sound, and they don't seem to make an effort to communicate with me, and here I'm sitting in the middle of the room , while all backs are turned speaking with my husband about what they want to do, and I feel like a non person, a number, an object they are speaking about. You would think the Clinic of otolaryngology would be able to communicate with a deaf person better, but I felt they treated me like they've never had anyone as deaf as me. No one at the desk lifted a pen to write what they wanted from me, not a one . Finally I was led to a room and a nurse wrote on the Erase board asking if I could contact my husband to come in. Seems like they don't have the time to see just how much I can communicate?
I had my head CT scan today, but I didn't know if I was to hold my breath or not, but it's over and done with now. When I arrived alone as they requested, and were asking me questions, well, sorry I can't hear enough to understand you, so they lean in to my ear and yell louder and louder, I still can't make out what they are saying, then they took my Hearing Aids away before they did the test, and then I could
hear nothing but silence. I have a vestibular test booked for beginning of Feb and have another follow up with the O Clinic. Almost got my vaccinations up to date. and have yet to go for pre-op but at this point, they still don't know what is causing the hearing loss, so if surgery will take place, it remains to be seen? Thank you for listening to my vent.
Unfortunately many of us have experienced the non-person situation. It continue to be surprised by the number of medical professionals that work with deaf/hh people yet seem to have no tolerance for people who cannot speak or hear.
 

stephaniep

Active Member
Thank you all for understanding. When I read your posts, I felt so bad for you too because I know exactly how it feels, and it doesn't feel good to feel like that non person or object they are talking about? I hope everything works out for you as well.
 

Behappy

Member
Late to the party... I am the same as posted above, one CI (so far).
My hearing was getting so bad I was about to loose my career.
My "hearing aid" professional(s) played games with needing stronger hearing aids, even when I asked about CI's.
After the last set they could not help me and suggested CI's....
Best decision I ever made! Environmental sounds crystal clear and normal conversations are understandable.
This is a work in progress and I am about to pull the trigger one ear number 2.
If you HA's are not working and you qualify DO NOT hesitate! My 2 cents...


P.S. Do not receive notices from this board??
 
This experience is told often and it's a shame on those doctors. Not from a place of pity but I am sorry this is a reality for so many of you. Please know you have allies that try; myself among them. I try in my line of work to give as much of your "voice" to those doctors. I do NOT tolerate them talking to me. I make them talk to my client and facilitate understanding. No one is more of an expert about themselves; I'm merely a tool in the room. Best to you all.
 

stephaniep

Active Member
Thank you again. Well today, is another one of these days? The doctor called regarding my CT scan and it was a virtual appointment because of Covid, so they spoke with my husband on the phone which said " DR. said that the CT looked okay but a little bit of the brain is in the way but he's pretty sure he can do it?" Hmm.. what does that mean, so my husband called the office again, and one nurse said it's nothing to worry about, and that she was going to ask another nurse what was written down? If I am going to go for this surgery I want to be reassured that it's safe to do so? Can anyone advise? Is this common?
I have another question, these people are dealing with the deaf community :deaf:who have little to no means of communication, nor knowledge of signing or lip reading? A lot of us can't answer phones and hear what is being said, so WHY DONT THEY HAVE AN EMAIL ADDRESS so patients can ask their questions through text or email and and get some direct answers. That would be very helpful. I am blessed to have a husband to stand in the gap for me and be my ears, but what about all those who have nobody, what do they do? Don't get me wrong, I am so grateful for this blessing of hearing to take place, it's just so frustrating being deaf and going for oodles of appointments, without fully knowing what is going on? My next test is next week for vestibular testing.
 
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