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Hello Everyone,
I joined yesterday and enjoyed reading all of your experience
with CI.
Until two months ago, I've been told that I am top candiate for
CI. Of course I was in shock and denial. Twenty odd years ago,
in Miami Beach I was told that CI is for the profound to "hear some
loud sounds" and it's not suitable for me. Now Im finding out
technology has changed over the years and I was in the dark.
Two months ago I went to E,N,T in Birmingham, AL for the
screaming in my left ear to the point where I can not sleep. This
doctor told me that I need to hear more in order to drown out
the screaming. I kind of knew that as I've heard before to turn on
a radio. Over the years my hearing has gradually decrease and
I am now labelled profound. I do speak, read lips and sign. I have
never been accepted at any deaf schools which hurt me but was
enabling me to do better. Being a candiate for CI, I am full of many
questions. One thing that really concerns me is there is no reverse.
Having said this, my questions are; for what reason would the
CI fail? Why would I need to go back to wearing bte aid?
I really appreciate all of you who take the time to share with me.
Suzi
 
I cant answer any questions about CIs cuz I dont have one but I do have one question. Why werent u accepted at the deaf schools? That's new to me.

BTW...:welcome: to AD!
 
Why werent u accepted at the deaf schools?

Well, back then in the 60's, the doctors and school principals
thought I would do better in a hearing envirnoment. I speak very
well for hard of hearing person. They and my mom felt putting me
in a deaf school would set me behind and not continue to thrive.
I really wasn't happy about it and yes I had lots of differculties in
the classroom. Teachers were ignorance and uneducation about
the deaf. Later in high school I met a wonderful deaf friend and she
taught me sign language.
 
SuziMaria said:
Why werent u accepted at the deaf schools?

Well, back then in the 60's, the doctors and school principals
thought I would do better in a hearing envirnoment. I speak very
well for hard of hearing person. They and my mom felt putting me
in a deaf school would set me behind and not continue to thrive.
I really wasn't happy about it and yes I had lots of differculties in
the classroom. Teachers were ignorance and uneducation about
the deaf. Later in high school I met a wonderful deaf friend and she
taught me sign language.
Click to expand...

I thought u meant that the deaf schools didnt accept u. I was like huh? Now, I got it.

I was in the exact same shoes as u. Was put in the hearing environment and I wasnt really happy about it either. Finally, at age 28, I learned ASL and now it is my life. That's great about about meeting a deaf friend in high school. ARe u still friends with that person?
 
Right, there was one deaf school on Long Island and they
did refuse me for these reasons.
Sadly No, we lose touch over the years.
 
Welcome Suzimaria! :welcome:

Yes the technology for CIs has improved considerably compared to when they first came out. At one time no deaf adults were given implants but now it's good enough for people like us to benefit.

Yes it is true that the surgery will in all likelihood destroy the cochlea hairs that are necessary to hear with a hearing aid and that is something you will have to weigh up. How well do you hear with hearing aids currently?

In my case my CI paid off for me but then I had very little to lose by that stage. My hearing had decreased dramatically and I had the worst tinnitus and recruitment that made wearing hearing aids very uncomfortable. The CI bypassed this problem and has improved my tinnitus by 60%. I am also able to hear better with my CI and hear some amazing quiet sounds that I never heard with my hearing aid such as the sound of a birds wings flapping when it takes off and the sound of my daughter breathing when asleep.

Speech recognition has also been good for me, although in the first few days/weeks it does sound high pitched! Now 7 months on I can use a cell phone reasonably well, which was not possible for me before.

So yes there are pros and cons to CIs. There is risk in surgery (as with any surgery) of getting an infection. Also for a small number of people they don't get much benefit from CIs. However usually if you have grown up being able to recognise speech then the chances of success increase as your brain will be faster in using the information from the CI and converting it to meaningful sounds.

Best wishes - have you already gone through the testing stage?
 
Also for a small number of people they don't get much benefit from CIs.
Click to expand...
Just to clarify, it's VERY rare that there's absolutly NO benifit from CI. That said, the hearing can vary significently............from just enviromental sounds to being functionally hoh. Just like the end result of hearing aids. (the hearing from those vary too) It's hard to tell what the end result from implantation will be. There's just a lot of variables.


Over the years my hearing has gradually decrease
Click to expand...
That is an excellent sign. People with progressive losses, have tended to do really well with the CI, b/c they remember what sound, sounds like. (whether they heard normally at one time, or b/c they went from hoh to deaf)

Having said this, my questions are; for what reason would the
CI fail? Why would I need to go back to wearing bte aid?
Click to expand...
Well the BTE aid would be useless in the implanted ear. But if you have one of those losses where one of your ears is "deaf" and the other gets some benifit from a hearing aid, you can continue wearing an aid in that ear.
 
Thank you all for the warm welcomes.

I have not done any tests yet aside from hearing test
and E,N,T appointments.

I can barely hear with the BTE aid anymore. The ringing
is so extreme that it's all I can hear. This coming week I will
be with a digital BTE represtative / demostrator. I have
never used digital before. If I do not benefit from the digital,
then CI is my next option. After reading all of your posts
here regarding CI, I have been dreaming of hearing once again!
Never in my wildest thoughts have I ever really believed
the deaf will be able to hear! Im really happy for all of you
who have the CI and regained your hearing. It really makes me
feel good! :)
 
SuziMaria,

I'll try to give you some of my experience.

I have had a farily fast hearing loss from roughly 40db a year ago to now 85db-95db loss with very little speech understanding in my good ear. My good ear still has a lot of tinnitus. My bad ear (Left) lost all hearing suddenly 15 years ago (100db non responsive).

I started wearing a ITE digital hearing aid when my hearing was from 40-55db loss then had to change to a BTE Digital for more power. The digital aid allowed fine tuning to maximize my failing cochlea in my right ear. During the exchange from a ITE to BTE digital aids, I wore an analog BTE aid. Although it was powerful, it caused a lot of problems as it was amplifying frequencies that I did not need amplified. As my hearing changed quickly, I was able to reprogram the digitals for my ongoing change in hearing.

You may find that a BTE digital aid might allow you to hear better than you have been able to hear with an analog aid. It provides a clean amplification but it can also be tuned very specifically to your loss. It also has a max limit where it will not amplify if sounds are to loud. Depending on your loss, the digital may not offer enough improvement to get you by which is where a CI comes into play.

Yes, a CI is non reversable. When the CI electrode aray is implanted, they cut open the cochlea and some of the fluid is drained out. This along with the implant electrode aray rubbing up against some of the very delacate hair fibers in a cochlea that is already not working very well is why there is almost no natural hearing left in it. This is probably one of the many reasons they go after the worse of the two ears.

For me, if both my ears were the same (loss), I'd probably go after the one that has more tinnitus to see if I could knock that out. Your Dr. may have other reasons but might be worth asking.

As far as a CI failing, there are few cases where this happens is my understanding but check with your Dr. as to their success. Direct hard impact is one way I'm sure it can fail. My Audiologist mentioned at one visit if it would fail from impact, you most likely would have more severe problems like a cracked skull and the implant would be a lesser worry at least for a while. Yes, there are other failures out there but todays technology is pretty good. I personally was and am not that worried about the internal processor being inside my head. I guess I look at it as I put a lot worse things in my body when I eat breakfast, lunch and dinner.

Anyway, I wish you luck in your search for information.
Steve
 
I'm the one they are talking about when they say "can't live without my hearing aid batteries for one day." My question is after having the CI and recouperating for 6-8 weeks, how do you feel during this period without your hearing aid? I'm so worried because of the terrible screaming in my left ear and having to go without anything for two months. My appointment to meet with the CI surgeon is on June 14th at UF Gainesville, FL. I was told if I'm approved by this surgeon, then my CI will take place within a month or less. How do you feel without hearing anything for two months? Thanks for taking the time to help me. Hugs, Suzi
 
Hi, welcome to AD!

I just wanna tell you a lil about me. I've been deaf since birth, due to Rubella. I had worn hearing aids all my life & was always able to hear environmential sounds along with myself/people talking. I speak really well & used to use the phone. But while I was pregnant with my oldest, my L hearing aid needed to be replaced so my insurance paid for a new one. Then soon after I discovered my R hearing aid wasn't working well so I took it to my hearing aid dealer, and they said that it had to be sent to get it fixed. Turns out it was badly damaged and since my insurance will only buy one HA at a time, I had to wait a few months to save up for another hearing aid becuase I was very pregnant & almost about to have my daughter [whose now 6!] so- few months later, we had the $ to pay 1/2 & got me a new hearing aid for my R ear. To my surprise, I couldn't use it anymore. Every time I tried, I'd feel weird, walk leaning to my left, and just couldn't really hear, cause Tinnitus would start every time I put my hearing aid on, even at the lowest volume setting. I didn't understand what was going on & couldn't deal with it. So after many months of trying, I gave up & just went 6 yrs wearing only my L hearing aid doing just as well but all along I've always missed hearing out of both ears, but I've never thought about getting CI on my R ear as I thought I was against it for myself not for others. I realize now that it was stupid of me to wait this long! Last summer, I noticed that I'd start getting hit with horribile Tinnitus almost 24/7 on my L ear, the ear I wear my hearing aid. My R hear has Tinnitus too but not this extreme! So, after years of my husbands pleads for me to see the ENT & ask for help- all the ENT did was say "I don't know why you're having these problems, how about I send you to [name of place] to get you evaluated for Cochlear Implants?" I was speechless. I told him that while I was growing up, my parents were told I was not eligable for it, plus my parents preferred that I choose. So after a few appts being cancelled for my CI evaluations due to Insurance being stupid & picky! I finally went in March 21st for my CI evaluation & I was told that I was indeed a great candidate for CI. A week later, I met with the surgeon who'd be doing my CI surgery on May 17th. He agreed that since my R ear is my worst ear, that we'd implant that side & hope the Tinnitus on my L ear would improve... as he realizes that at this point, I have nothing to lose by getting the CI implant on m R ear, since I'm not able to wear my hearing aid on that ear anyways. If he were to do CI on my L ear & CI didn't work, then I'm completely Deaf for the rest of my life, with no more aids, I can't take that risk! The surgeon said that if I'm pleased with my CI & everything went well, I can go ahead & start fighting the Insurance Co., to let me get my 2nd CI in my L ear as I believe that if Tinnitus doesn't go away in my L ear, I will probably simply just discard the hearing aid and only use CI on my R ear, that is if CI works the way I'm hoping it will.
I'm told it'll work good for me, because I've already heard for many years, I know what things sounds like, altho, yes I know things will sound strange/different with the CI but as time goes on, I will get used to it & start understanding sounds. At this point, the most I'm hoping to achieve with my CI is to hear the way I did with my HA & be able to communicate with my hearing family like I've always been able to. My Audi said that her goal for me is that the CI will help me be able to hear speech/lipread but of course she's hoping I get more than that. I will keep everyone updated on my CI journey as I go thru the surgery, the activation, and how I'm hearing things & what I hear w/ CI that I haven't ever been able to w/ HA's , and so on. So be on the look out for my posts. :]

Sorry this was long, it's normally not. lol. :]
 
SuziMaria said:
I'm the one they are talking about when they say "can't live without my hearing aid batteries for one day." My question is after having the CI and recouperating for 6-8 weeks, how do you feel during this period without your hearing aid? I'm so

I am going to be lucky, after my CI being implanted on my R ear, I'll still be able to hear with my L hearing aid during my 3-4 wks wait for the activation day. Altho, with this Tinnitus bullshit I've been having, there's times/days even that I can barely hear shit due to the Tinnitus masking out everthing, especially speech, which is super hard on me, having two small hearing children, ages 6 and 4. :/ Blah! But, they're having a blast practicing ASL & learning more signs than ever. I regret not forcing my whole household to learn signs, espeically my children since they were babies. It's just I was raised in a hearing family being the only one deaf, and my parents took full advantage of the fact that I could hear & speak so well that we just never really signed at home, they didn't want me to. So I've always just signed when I'm around Deafies and just use voice/my own hearing/lipreading around family. I'm changing all that now after I saw how interested my 4 yr old is in signing now, especially fingerspelling!!! :]
Click to expand...
 
deafmama78 said:
Hi, welcome to AD!

Thank you for sharing your story with me.

If he were to do CI on my L ear & CI didn't work, then I'm completely Deaf for the rest of my life, with no more aids, I can't take that risk!

I'm scared of the very same outcome! This is why I'm on the 3rd E,N,T specialist. The first E,N,T in Birmingham, AL told me that I'm a canditate for CI, I was totally shocked. I didn't believe him. I went back to my local E,N,T for him to look over my chart and Birmingham notes. He said he is all for it - 100%. This next appointment in Gainesville will give me more insight. Scary!
Click to expand...
 
I raised my son with ASL as a second language. Now he needs a second language for college requirements. The college does not recognize ASL without certificates. He has to sign up for sign classes or learn Spanish.

Honestly, I love hearing everyone's story. You all add to enlighten me in some way or another. Thank you for sharing your world with me. Hugs, Suzi
Sorry this was long, it's normally not. lol. :][/QUOTE]
 
giving up natural hearing

I'm one of those people taking the risk and giving up my remaining natural hearing. I can still talk on the telephone, though with difficulty, and I still enjoy music. Just a few days ago, for the first time in my life, I realized that I could stick in the earphone of an iPod into my left ear and turn it all the way up and actually hear the music more clearly than without a hearing aid... which was quite a revelation. (Someone could shout into my ear and I wouldn't hear anything.) I would rather get my right ear implanted but I'm told there's a risk of vestibular problems because my left ear, though my good hearing ear, has impaired vestibular function. I can't hear out of my right ear but I have good vestibular function in that ear.
It's only necessary to have one good ear for normal vestibular function, but if they're both messed up, it becomes a huge problem.

My insurance has officially come through and I'm having my surgery at Johns Hopkins on May 7th. Due to some scheduling conflicts I have, they've agreed to turn it on after two weeks, which is amazing.

I'm still a little bit on the fence about which ear to get it in... but at this point 95% sure I'll get it in the left ear. If anybody has advice, I'd love to hear it.
If I get the implant in my left ear I destroy all my hearing but my vestibular function remains intact.
If I get an implant in the right ear, I keep what little hearing I have in the left ear, and I have a 10% chance of seriously messing up my vestibular system (and a 90% chance of being just fine). But that 10% includes the possibility of not being able to walk in a straight line anymore.
There's also the fact that it's only a matter of time before I lose the rest of my hearing in my left ear.

Suzimaria, that's something to consider. If your hearing loss is progressive, it's only a matter of time. I could have waited longer, but I've chosen to be proactive rather than reactive.

I have a 95-110 decibel loss in both ears at all ranges. I have severe recruitment in my right ear and a hearing aid doesn't help at all. And yet with a hearing aid in my left ear I can still tune my guitar, listen to music and even hear the sparrows in spring. I know, it makes no sense.

Here's a piece of interesting info I just learned from one of my Hopkins classmates. The auditory cortex is more developed on the left side than the right side. He is deaf, just like me, and both of us hear better out of the left ear. A coincidence? Or something more?
 
SuziMaria said:
Hello Everyone,
I joined yesterday and enjoyed reading all of your experience
with CI.
Until two months ago, I've been told that I am top candiate for
CI. Of course I was in shock and denial. Twenty odd years ago,
in Miami Beach I was told that CI is for the profound to "hear some
loud sounds" and it's not suitable for me. Now Im finding out
technology has changed over the years and I was in the dark.
Two months ago I went to E,N,T in Birmingham, AL for the
screaming in my left ear to the point where I can not sleep. This
doctor told me that I need to hear more in order to drown out
the screaming. I kind of knew that as I've heard before to turn on
a radio. Over the years my hearing has gradually decrease and
I am now labelled profound. I do speak, read lips and sign. I have
never been accepted at any deaf schools which hurt me but was
enabling me to do better. Being a candiate for CI, I am full of many
questions. One thing that really concerns me is there is no reverse.
Having said this, my questions are; for what reason would the
CI fail? Why would I need to go back to wearing bte aid?
I really appreciate all of you who take the time to share with me.
Suzi
Click to expand...

so much of positives and negatives about CI..... it is your own Choice to make...make many researches on it... before you can decide...
 
deafdyke said:
Just to clarify, it's VERY rare that there's absolutly NO benifit from CI. That said, the hearing can vary significently............from just enviromental sounds to being functionally hoh. Just like the end result of hearing aids. (the hearing from those vary too) It's hard to tell what the end result from implantation will be. There's just a lot of variables.

That is an excellent sign. People with progressive losses, have tended to do really well with the CI, b/c they remember what sound, sounds like. (whether they heard normally at one time, or b/c they went from hoh to deaf)


Well the BTE aid would be useless in the implanted ear. But if you have one of those losses where one of your ears is "deaf" and the other gets some benifit from a hearing aid, you can continue wearing an aid in that ear.
Click to expand...

No Benefits....... MIss know it all.... i know three friends of mine who had implanted with CI.. one FAILED.... two had three implants.. get no benfits.. at all... most of other friends does get benefits...
 
SxyPorkie said:
No Benefits....... MIss know it all.... i know three friends of mine who had implanted with CI.. one FAILED.... two had three implants.. get no benfits.. at all... most of other friends does get benefits...
Click to expand...

DD,

Sometimes no matter what you write, you just can't please everyone :)

Got your point though.
Rick
 
Welcome to the ALLDEAF :) I am sure you will enjoy here.

Well, I have a CI for a year now, and doesn't really wear it that often. I thought the CI could help me to learn to talk, but it don't. I can't learn because my CI don't give me the hear that good. I only wear it when I go to movie theater, etc. Also CI give me headaches when over wearing it or even I start put on CI, it give me watery eyes in pain. I was not really happy with my CI. Also my family kept begging me to wear the CI while are kinda annoying to me. Being honestly I wish I never get a CI myself..

But some CI worked for some deaf people, I have lot of friends who wear CI and talks. They are lucky.
 
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