Re: Losing hearing and considering a CI

[Guest guest]

Dear " bthkon "

You describe somewhat the situation I found myself in back in the

late 80's and early 90's. I was desperately hanging onto my job by a

very frayed thread. I was stressed beyond words, sometimes

experiencing panic attacks in the workplace over my hearing situation

and fear of screwing up. It took all my energy to survivie the work

day, and weekends I just crashed only to go back for more of the same

the next week. Life was awful.

I also struggled with the decision, mostly because back at that time,

the early implants provided improved hearing, but I was still

struggling with the concept of letting go of the hearing loss I

understood so well to go into uncharted waters of a Cochlear Implant -

a device no one could tell me exactly how much it would improve my

hearing. They only could tell me I would hear better.

I attended many Hearing Loss Association of America (HLAA) formerly

Self Help for Hard of Hearing People (SHHH) conventions meeting

people who had the CI and learning from them. Two special friends

from that time are on this list. I observed them in situations and

compared how well I functioned. I asked them questions and followed

the advancements made in the technology over the years. Finally at a

convention in Dallas I was with two dear CI friends - noticed they

were conversing with ease in a horrible listening environment that I

found myself struggling. That was my " aha " moment. Questions I

needed answered that were answered at that convention in workshops -

what was the failure rate (less than 1%), can you be reimplanted if

there is such a failure (yes) and lastly, data that demonstrated the

level of speech discrimination post surgery (some over 90%) put the

nail on the coffin of my Hearing Aid use.

What you are feeling is NORMAL - and you have come to a wonderful

place to get information and support. While I had far less hearing

at the time I received my implant, I am sure there are others on this

list who have a similar hearing history to you (having more residual

hearing at the time of surgery) All I can tell you is that I am

coming up on my 11 year anniversary. I am now retired, but one year

after my activation I was able to PROMOTE three levels at my job -

simply because I was able to take cold telephone calls, go out and

present to large groups and conduct training. None of this was

possible prior to my implant. My only regret is that I did not make

the leap of faith sooner! This miracle has given me my life back!

I just went to a movie Monday, and I heard most everything just

fine. It was a musical (Hairspray), so some lyrics were lost, but

not alot. I can hear MOST of what is said on TV, but sometimes

clapping or laughter might drown out what is said. I can listen to

ballgames on the radio, which is stupendous! At three months post

activation I tested 96% speech understanding on the phone, however

many people do not have this kind of a result so soon depending on

their hearing history and other factors. It takes lots of practice,

patience and perseverance. Everyone is different.

Feel free to write and share more questions. We are here to help!

I also found that when I hit that magical age of 50, things that I

did to cope with my hearing loss became harder and harder. I wonder

if anyone else had that happen to them. I always felt like my mind

was spinning like a computer RAM - pulling in pieces of info and

trying to piece it together as fast as possible. The older I got the

harder that mental process became, as well as tiring as all get out!

(smile)

Warmly, Carol in WI

>

> Hi. I'm 45, losing my hearing and considering a CI. My mother has

the

> same problem I do and is now completely deaf without hearing aids. I

> have lost a lot of high frequency sound and every year the lower

> frequencies are getting worse.

>

> Right now I struggle. At home with family it isn't too bad. Out in

the

> real word... ugh. Sometimes fine, sometimes I can't understand a

> person at all. Groups are hard. Work is hard. ( I work at home but

> when I go into the office, it is hard). Phone is hard.

>

> I am starting to think about getting a CI now, though in some ways

I'm

> not sure my hearing is bad enough yet. I was evaluated and told I am

> borderline. But I know it is going to get worse. And I already

> struggle, so I'm wondering why I should wait.

>

> Are there any others out there who had a similar situation? I would

> love to know what/how you decided. I would also love to hear from CI

> users to understand what I might expect. How easy/hard is it for you

> now? Can you hear TV? Movies? Phone? Theater? (The answer is no for

me

> :-)

>

> Any feedback I could get would be much appreciated!

>

[Guest guest]

Beth and and all others who are going to get your implants done soon:

Please remember that the real success of your implant rests not only with

the surgeon but with you. It is not like sticking on a hearing aid. YOU will

have to work with this and teach the brain to hear again. Keep expectations

low and determination high, most especially in the beginning. I don't mean

to draw any dark clouds overhead for you. I just want to make sure that you

are aware that this is altogether different hearing than you get from hearing

aides. In many cases, that lazy brain has to be awaken to understand it has

to go to work! Practice with children's books on tape is good at first. I

wish you all much success with every step of the way of this journey.

Evon

CI Left Side 07/03

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[Guest guest]

Hi bkthon:

I can describe my experience with the CI - and it sounds similar to your

experience. BUT - keep in mind everyone is different.

I have what is called severe to profound progressive hearing loss. I also could

not hear movies, could not hear words on the radio, difficulty with the

telephone, hard time hearing children, difficulty in the conference room, could

not hear someone behind me in the car, etc.

I have been activated only 3 months and have had great progress! I use my cell

phone with ease. I use telecoil (a switch on the Nucleus Freedom that enables

you to hear the phone better), but am getting better at using the phone without

telecoil). I have not yet been to a movie, but can hear in conference rooms

(even sitting in the back of the room), hear kids and all those other small

sounds I was missing.

My audi asked me to avoid using my HA in my right ear for 3 months (I am

implanted on my left side). I recently tried on the HA and was amazed at the

poor quality of sound of the HA compared to my CI. Now I am just using the CI

on my left side and love it!

Rhona

cause of hearing loss unknown

Cochlear Awareness Network Advocate

4/3/07 Surgery, left ear Nucleus Freedom

5/8/07 Activated

Univ of Miami

Dr. Balkany

[Guest guest]

Oh thank you, Rhona! Hearing stories like that gives me so much hope and makes

me so excited! I can't believe there is help out there! So glad for you too that

things are going so well!

- Beth

Rhona <rhonamf@...> wrote: Hi bkthon:

I can describe my experience with the CI - and it sounds similar to your

experience. BUT - keep in mind everyone is different.

I have what is called severe to profound progressive hearing loss. I also could

not hear movies, could not hear words on the radio, difficulty with the

telephone, hard time hearing children, difficulty in the conference room, could

not hear someone behind me in the car, etc.

I have been activated only 3 months and have had great progress! I use my cell

phone with ease. I use telecoil (a switch on the Nucleus Freedom that enables

you to hear the phone better), but am getting better at using the phone without

telecoil). I have not yet been to a movie, but can hear in conference rooms

(even sitting in the back of the room), hear kids and all those other small

sounds I was missing.

My audi asked me to avoid using my HA in my right ear for 3 months (I am

implanted on my left side). I recently tried on the HA and was amazed at the

poor quality of sound of the HA compared to my CI. Now I am just using the CI on

my left side and love it!

Rhona

cause of hearing loss unknown

Cochlear Awareness Network Advocate

4/3/07 Surgery, left ear Nucleus Freedom

5/8/07 Activated

Univ of Miami

Dr. Balkany

[Guest guest]

Actually, one more question, Rhona. When you say you can hear ... kids, in the

conference room, etc... do you mean you can understand what is being said? I

guess it is a dumb question, but I can " hear " the sounds with my hearing aids

but don't know what the heck they are saying! :-)

Is it easy to understand or still a struggle?

Thanks for clarifying for me.

Rhona <rhonamf@...> wrote: Hi bkthon:

I can describe my experience with the CI - and it sounds similar to your

experience. BUT - keep in mind everyone is different.

I have what is called severe to profound progressive hearing loss. I also could

not hear movies, could not hear words on the radio, difficulty with the

telephone, hard time hearing children, difficulty in the conference room, could

not hear someone behind me in the car, etc.

I have been activated only 3 months and have had great progress! I use my cell

phone with ease. I use telecoil (a switch on the Nucleus Freedom that enables

you to hear the phone better), but am getting better at using the phone without

telecoil). I have not yet been to a movie, but can hear in conference rooms

(even sitting in the back of the room), hear kids and all those other small

sounds I was missing.

My audi asked me to avoid using my HA in my right ear for 3 months (I am

implanted on my left side). I recently tried on the HA and was amazed at the

poor quality of sound of the HA compared to my CI. Now I am just using the CI on

my left side and love it!

Rhona

cause of hearing loss unknown

Cochlear Awareness Network Advocate

4/3/07 Surgery, left ear Nucleus Freedom

5/8/07 Activated

Univ of Miami

Dr. Balkany

[Guest guest]

So that is pretty universal, Evon? How long does it usually take to feel like

you can hear effectively with a CI? I guess it depends...

EBurk56622@... wrote: Beth and and

all others who are going to get your implants done soon:

Please remember that the real success of your implant rests not only with

the surgeon but with you. It is not like sticking on a hearing aid. YOU will

have to work with this and teach the brain to hear again. Keep expectations

low and determination high, most especially in the beginning. I don't mean

to draw any dark clouds overhead for you. I just want to make sure that you

are aware that this is altogether different hearing than you get from hearing

aides. In many cases, that lazy brain has to be awaken to understand it has

to go to work! Practice with children's books on tape is good at first. I

wish you all much success with every step of the way of this journey.

Evon

CI Left Side 07/03

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

> So that is pretty universal, Evon? How long does it usually take to

feel > like you can hear effectively with a CI? I guess it depends...

Yes, it depends upon the person, Beth, but I think also that no matter

how well you start off understanding it *does* improve with time. I'd

expected (not sure why) to reach a plateau at 6 months or at most a

year but my understanding is still improving, little by little, at 20

months. I find myself understanding more of what I hear on the tv or

radio and faring slightly better in groups.

I could understand quite a lot of what the audi said upon activation

if I could see his lips <g> and could understand less when he covered

his mouth with his hand. Now I understand what my wife says from

another room. I can't tell *what* room she's in but I can understand

what she says.

Many say that voices sound " normal " after a few days or weeks. They

have never sounded normal to me, even though they no longer sound like

Alvin the chipmunk. They sound hoarse or maybe like loud whispers and

a bit too high in pitch. Perhaps they sound normal if one considers

normal as the status quo. I'm accustomed to them but I can still

remember what they sounded like when I could hear them without the ci.

Virg

[Guest guest]

Yes Beth, it is somewhat different for each individual. You will be able to

hear/understand some things right away - but, with me, things I did hear

were through a buzz sound for a week or so. It wasn't disturbing - just

different. The audiologist told me it was a common thing at first and to not

be

alarmed. The buzz went away in a short while. It wasn't a constant buzzing.

When a noise or voice I was trying to hear was going on, so was the buzzing.

(Low Pitch) - also if I breathed deeply I'd hear this buzz.

Actually my first day of activation was horrible! I kept hearing a very

loud screeching high pitch that no-one could understand why or what it was.

Come to find out, (they discovered after I'd left), I was seated next to a

wall

that has the air conditioning pipes or vents or something coming through

there and downstairs they said someone had left the door open. I still don't

understand how that made a difference....but, the sound I was getting that

no-one else heard was a whine or whatever it was from the a/c. It was

torturous

and upset me a LOT! You can well imagine how very upset I was after looking

so forward to activation day for so long! They tried moving me to another

room to continue with the activation - but, by then my nerves were bouncing off

the walls! I was amazed when I left the building though. Things were SO

MUCH better! Even sounds in the large diesel pickup truck or traffic sounds

didn't bother me and I got home and heard all sorts of neat sounds....I was

sitting on my patio and had a paper towel in my hand and was tearing it. It

dawned on me that I heard it tear! I poured tea over ice and heard the ice

crackle! Now, keep in mind....I also heard that low pitch buzz along with

these

things. My husband and my best friend were there and both wanted to read to

me to see if I could understand/hear them. I'd pick up some of what was

said...not everything by a long shot...but, they were excited for me. So, just

wanted you to understand that the buzz for me was not disturbing my hearing

things very much. You're excited to hear and all - but, it will be tiring

after awhile. The next day (Day 2 of Activation), things went MUCH better!

They had discovered the culprit! I think I scared everyone with my reaction

on that first day! ha

Things really do go smoothly. Much depends on your audiologist and your

working with him/her to get good mappings (programs set in your processor).

Then a determination to hear. It takes practice for some things. It will be

exciting and once they let you wash your hair, you'll feel even human again!

ha ha

I think we women dread that shaving of a place on our heads more than the

surgery itself! The good news is...it grows back!

Your understanding of speech will be much better and as someone has posted,

you'll probably eventually be able to hear someone from another room of the

house! Isn't that amazing? When my husband & I tested this amazing

accomplishment, he started talking to me as I was walking away from him. I

heard him

until I got into an area that had a television turned on that drowned him

out.

I still need to work with the car radio and with music. Most usually, I

just shut it off because it just bugs me. Music definitely did not come

automatically back to me. It in fact still sounds odd most of the time. It's

difficult to describe what it means when I classify it as odd....but, I don't

know

how to describe it.

I do remember how music is supposed to sound though....and what I heard is

not right. BUT, I don't practice with it enough to expect it to get any

better.

Oh.......there will be so many, many things that will excite and amaze you!

Just be patient, be active in helping yourself do what your audiologist

advises and even keep a record of your current program and tell the audiologist

what you do or do not like at your next mapping. They can usually help with

an adjustment in your program.

Good Luck/God Bless

Evon

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[Guest guest]

Hi Beth,

If you are missing out on so much, then you should be implanted.

Children's voices are high pitched, and that is often the first frequency

that goes with age and hearing loss.

If you are struggling every day to communicate and understand, then

get implanted. Even if your test show you are " borderline " you do not

live in a sound booth. You live in a real world, and you're missing out

on things that you need to hear. The struggle to hear and understand is

physically draining.

I go to movies and understand probably 90 to 95% of the dialogue. I

listen to the radio, and understand the announcer. I understand the

announcement in grocery stores, WalMart, K Mart, etc. I don't have to

look at peoples faces to understand what they are saying, so I'm not

lipreading. I had an ear implanted that had no hearing, and no

stimulation for 20 years. But I've been raised orally, and don't sign.

Certainly you won't be worse off with an implant - get the worse ear

implanted and you can still wear the hearing aid in the other ear. The

Cochlear Freedom has a setting called " whisper " specifically used to hear

one person speaking who is far away - like in a meeting, or at a church.

There are other features to optimize your hearing.

But I have a feeling things are going to continue to get worse hearing

wise, and you will find yourself withdrawing from social situations

because it's too darned hard to understand what is going on around you.

So, let me know if you have any more questions.

Hi . Thanks so much for responding! I have been evaluated at NYU

and am waiting for the final report. The audiologist said I am

borderline, but did seem to say I might benefit from one. As I really

look at my life and how much I miss, I am realizing that it may be time.

What I am trying to get a feel for is... how good is it with a CI? I

already can't do movies, don't hear words on the radio, have a hard time

on the phone (depends on the person), have a very hard time hearing small

children, can't hear in a conference room even if one person is talking

(I do really badly with distances if the person is not speaking loudly

enough), and more and more adults are becoming hard for me to hear. And

this is WITH the $6000 hearing aids I just bought. So in reality, I am

not doing so well. But, at home, with my family, if they are relatively

close to me, I do pretty well.

So anything I can learn to understand what works and what doesn't work

with a CI (movies? hearing from a distance? etc...) will help me

understand if I'd be better off with one than I am now.

Thanks so much for your help.

[Guest guest]

Hi Beth:

I can understand them the words the kids are saying, the words in the meetings,

etc. Sometimes I miss a word, but so do " hearing " people. Also, most of my

work colleagues speak Spanish and some heavy accents when speaking English.

Understanding them with the CI is much, much better than with the HA.

Another thing is that I know I am happier overall since I don't have the daily

frustrations that come with not being able to hear. I am continuing to improve

with the CI and look forward to the new changes.

Keep in mind that everyone's experience is different. I did work at learning to

use the CI and learning to hear better, but I did understand speech right away.

Some people can understand speech immediately, some take months to understand

speech.

Take care,

Rhona

cause of hearing loss unknown

Cochlear Awareness Network Advocate

4/3/07 Surgery, left ear Nucleus Freedom

5/8/07 Activated

Univ of Miami

Dr. Balkany

1d.

Re: Losing hearing and considering a CI

Posted by: " Beth Kon " bthkon@... bthkon

Thu Aug 16, 2007 7:20 am (PST)

Actually, one more question, Rhona. When you say you can hear ... kids, in the

conference room, etc... do you mean you can understand what is being said? I

guess it is a dumb question, but I can " hear " the sounds with my hearing aids

but don't know what the heck they are saying! :-)

Is it easy to understand or still a struggle?

Thanks for clarifying for me.

[Guest guest]

hey leslie, long time! i know how well u do also, u got yours a few years

after me, but oh, those good times at the league in new york, huh? looks like

all us oldtimers are back, and what better way to show the newcomers that a

fantastic journey awaits them!!! yes, it does take practice, and yes,

evreyone gets different results but i also believe that listening to our

stories

has got to be an inspiration! i never imangined i would be where i am

today, i went 13 yrs without music or the phone when i lost my hearing at

30.....i

recently found some journal notes i had written before the surgery, and i

said, if i could get music back that would be great...the phone would be icing

on the cake, but i was not expecting it...lo and behold, i've got both...i

used to see people walking down the street in the city when cell phones first

came out, and i remember saying, " i am going to do that one day! " ....now it's

old hat! i can only imagine what the new technological advances will be in

the years to come!!!!!

cindy

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