Re: What should I do??

May 22, 2003

Hi Elsie,

I had a similar experience. Lost all the hearing in my left ear. Ten years

later had sudden hearing loss in my right ear. Prednisone helped for a while

but after fluctuating for a year I was suddenly totally deaf. The CI is

wonderful. If you are a candidate, the hearing aids won't do enough for you.

You

must see an appropriate otologist. Sounds like your doctor may be but your

audiologist does not really know about CI's. We were all scared before surgery

but most of us had relatively uneventful surgery and are thrilled with our

results.

Steinerman

N24 Contour 5/00

May 22, 2003

Elsie:

Menieres did about the same to me at 52. I'm a teacher and the loss of

hearing was so devastating to be psychologically that I jumped at the the chance

to

get the CI. I can talk with my friends, family and do my job now. My

biggest fear was that it wouldn't work--but it has for me.

Hal

May 22, 2003

Elsie,

I would use the most expereimced audi you can for mapping if you have the

implant.

my hearing certainly is not perfect but it is quite acceptable for me. After

3 years, it still gets better with each mapping. My audi said that in her

experience people with my type of hearing loss (probably autoimmune, or an

atypical autoimmune Meniere's) do not have the same stability with their maps as

some other types of hearing loss and do need more frequent adjustments to the

map. The telephone is still difficult for me.

Steinerman

N24 Contour 5/00

May 22, 2003

Elsie,

Welcome to CI Hear. I'm sorry that you are dealing

with all this and know how hard it is.

If you are interested in a CI, you need to be seen at

a CI Center because most regular audiologists are not

qualified to tell you whether you are a candidate for

a cochlear implant. It does sound like you just might

be.

E mail me privately with your location if you are

interested in finding a center near you.

It really is a miracle and we love sharing it. We'll

help you any way we can.

Alice

N24 11/99

N24C 04/03

Bilateral

--- Elsa Nunez <ec_nunez@...> wrote:

> I am 48 years old, female. 7 years ago I had sudden

> hearing loss (overnight) in my right ear. Can hear

> noises but speech is almost impossible to hear or

> rather to understand.Loss in left ear was moderate.

> Tremendous tinnitus. Thought I was going to lose my

> mind. Had to quit work for 3 months. Flew to Dallas

> and got help with Tinnitus Retraining therapy. It

> helped. FAst forward to 3/2003. Lose hearing left

> ear. (Overnight). Augie does not recommend CI.

> Recommends hearing aids. They help some. Dr. overode

> her recommendation and wants to do CI. I would love

> CI but am terrified. I " ve lost so much so fast. Any

> imput is so much apprecaited as at this time I am at

> a crossroad.

> Thank you. Elsie

May 22, 2003

You're not going to believe this but they work together at the same Medical

center. After I gave the recommendation to the Dr. he called her and they had

" words' over the recommendation. She does mapping and everything but she tried

every way to discourage me from an implant. You have too much hearing left, I

know I can improve your hearing with aids, an implant won't improve your hearing

if you have trouble discriminating words, many times they do not work, one man's

hearing came back and now he hates his CI . My husband said she must get a big

commission on the aids!! I have 35% in both ears but I can hear better with my

left. I can not hear without the aids unless it's my 2 daughters because they

look at me when they talk and the talk loud. Bless them.

sjsteino@... wrote:Hi Elsie,

I had a similar experience. Lost all the hearing in my left ear. Ten years

later had sudden hearing loss in my right ear. Prednisone helped for a while

but after fluctuating for a year I was suddenly totally deaf. The CI is

wonderful. If you are a candidate, the hearing aids won't do enough for you.

You

must see an appropriate otologist. Sounds like your doctor may be but your

audiologist does not really know about CI's. We were all scared before surgery

but most of us had relatively uneventful surgery and are thrilled with our

results.

Steinerman

N24 Contour 5/00

May 22, 2003

Elsie,

It's your hearing so you will need to be your own

advocate. It does sound as if the doctor is in

agreement with you.

Is this the only audiologist you can see?

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> You're not going to believe this but they work

> together at the same Medical center.

May 22, 2003

No she is not the only one and I will certainly replace her if I get an CI.

Alice <justagram@...> wrote:Elsie,

It's your hearing so you will need to be your own

advocate. It does sound as if the doctor is in

agreement with you.

Is this the only audiologist you can see?

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> You're not going to believe this but they work

> together at the same Medical center.

May 22, 2003

Could you go to someone else for your CI evaluation?

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> No she is not the only one and I will certainly

> replace her if I get an CI.

>

> Alice <justagram@...> wrote:Elsie,

>

> It's your hearing so you will need to be your own

> advocate. It does sound as if the doctor is in

> agreement with you.

>

> Is this the only audiologist you can see?

>

> Alice

>

> --- Elsa Nunez <ec_nunez@...> wrote:

> > You're not going to believe this but they work

> > together at the same Medical center.

May 22, 2003

do you mean like a second opinion from a doctor and audiologist??

Alice <justagram@...> wrote:Could you go to someone else for your

CI evaluation?

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> No she is not the only one and I will certainly

> replace her if I get an CI.

>

> Alice <justagram@...> wrote:Elsie,

>

> It's your hearing so you will need to be your own

> advocate. It does sound as if the doctor is in

> agreement with you.

>

> Is this the only audiologist you can see?

>

> Alice

>

> --- Elsa Nunez <ec_nunez@...> wrote:

> > You're not going to believe this but they work

> > together at the same Medical center.

May 22, 2003

No...what I'm wondering is whether your center has

more than one audiologist who can evaluate you for the

cochlear implant. It seems like the one you are

seeing now is not in favor of it. Of course, she

might feel totally different if she did the required

evaluation on you.

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> do you mean like a second opinion from a doctor and

> audiologist??

>

> Alice <justagram@...> wrote:Could you

> go to someone else for your CI evaluation?

>

> Alice

> --- Elsa Nunez <ec_nunez@...> wrote:

> > No she is not the only one and I will certainly

> > replace her if I get an CI.

> >

> > Alice <justagram@...> wrote:Elsie,

> >

> > It's your hearing so you will need to be your own

> > advocate. It does sound as if the doctor is in

> > agreement with you.

> >

> > Is this the only audiologist you can see?

> >

> > Alice

> >

> > --- Elsa Nunez <ec_nunez@...> wrote:

> > > You're not going to believe this but they work

> > > together at the same Medical center.

>

May 22, 2003

Elsa,

welcome to the forum.

It looks as if you've received a lot of good advice from several

folks here, and I agree with all of them. All I can say is if you

want an implant and you're not happy with your audiologist, You have

every right to get a different audiologist if one is available to

you; one who will do a fair ci evaluation for you and let you know

whether now is the time for you to get a ci or not.

Granted if one can do better with hearing aids than with a ci, it is

better, but if your hearing aids aren't doig you much good then you

may well qualify for a ci.

Please continue to ask questions and we'll do our best to answer them

or to find someone who can.

Feel free to email privately at any time as well.

I look forward to hearing more from you.

Take Care,

Silly in MI

May 24, 2003

Elsa, It is not a bad option to let the audiologist see if she can fit you

with better hearing aids for a trial period. That way you would know, and

she would know, if the aids would provide adequate accommodation for your

hearing loss. My understanding is that you have a 30 day trial period for

hearing aids before you have to purchase. That way you could work with

rather than against the audie. Also you might want to discuss with her the

option of implanting the worse ear and aiding the better ear. There are a

number of people with a CI in one ear and a hearing aid in the other. Once

the implant is done, there is no option of switching back to hearing aid in

the implanted ear as generally the remaining hearing in the implanted ear is

destroyed. That may be why your audie is trying to be conservative.

Actually the audies have more experience with the aftermath of the CI than

the doctors do. I think I would tend to trust the audie over the doctor. In

my center we don't even see the implant doctor until after the audie

determines us to be a candidate. I have had the cochlear implant for 16

years, and hear very well with it. I also had many years of successful

hearing aid use before my hearing bottomed out. You will have a long term

relationship with the audiologist and center where you get a CI. It is best

that it not start out strained. I suspect that even going to a different

audie in the same center will result in strained relationship as you will

still run across the conservative audie. I have had tinnitus all of my

life, and still have it with the CI. Having never been without it I am use

to it and it is like background noise to me. It is loud enough for me to

hear even in the noisiest environment that I have been in. Nothing totally

masks it. Hang in there, Cheers, Ruth

Re: What should I do??

You're not going to believe this but they work together at the same Medical

center. After I gave the recommendation to the Dr. he called her and they

had " words' over the recommendation. She does mapping and everything but she

tried every way to discourage me from an implant. You have too much hearing

left, I know I can improve your hearing with aids, an implant won't improve

your hearing if you have trouble discriminating words, many times they do

not work, one man's hearing came back and now he hates his CI . My husband

said she must get a big commission on the aids!! I have 35% in both ears but

I can hear better with my left. I can not hear without the aids unless it's

my 2 daughters because they look at me when they talk and the talk loud.

Bless them.

sjsteino@... wrote:Hi Elsie,

I had a similar experience. Lost all the hearing in my left ear. Ten years

later had sudden hearing loss in my right ear. Prednisone helped for a

while

but after fluctuating for a year I was suddenly totally deaf. The CI is

wonderful. If you are a candidate, the hearing aids won't do enough for

you. You

must see an appropriate otologist. Sounds like your doctor may be but your

audiologist does not really know about CI's. We were all scared before

surgery

but most of us had relatively uneventful surgery and are thrilled with our

results.

Steinerman

N24 Contour 5/00

May 24, 2003

Elsa,

Ruth has sent you a very wise message. The CI is a wonderful device

but should only be a last resort when all else has failed. Perhaps

the audiologist just wants you to try every possible means for you to

hear with your natural hearing and if that is true, it's a good

thing. Having a CI requires surgery which no matter how minor can be

risky.

After reading Ruth's post, I tend to agree with her. If you are

comfortable with your audiologist, give her the chance to help you

the way she feels she should. Trying the hearing aid for 30 days is

a good option. It's only a month which is a relatively short period

of time. If this doesn't seem to be the answer, it's probably time

to convince her to see if you are a CI candidate.

Good post Ruth. You presented a different viewpoint and it makes a

great deal of sense. Thanks!

Alice

N24 11/99

N24C 04/03

Bilateral

< Elsa, It is not a bad option to let the audiologist see if she can

fit you with better hearing aids for a trial period. That way you

would know, and she would know, if the aids would provide adequate

accommodation for your hearing loss. My understanding is that you

have a 30 day trial period for hearing aids before you have to

purchase. That way you could work with rather than against the

audie. >

May 25, 2003

Elsa,

As a cochlear implant user and an advocate who advises many about

many cochlear implants, I agree with Ruth as well. When I talk to

someone and they tell me their audie has recommended a trial period

with different hearing aids, I advise them to try it.. Most trials

are about a month and You (and your audie) should know by that time

if the aids are going to benefit you; in fact, in cases where people

have fair residual hearing, it's often required to go with the

hearing aid trial first.

If it was me, and I had a chance to hear better without the ci, I'd

take a shot at it; what's a month or so compared to making a decision

that will affect the rest of your life?

For me, it was a no brainer.. I had just 5% residual hearing when I

was implanted and totally missed everything except for maybe 1 or 2

words in testing at my evaluation.

Am I happy with my ci? You bet I am.. Best choice I ever made in

my life, but it was a last choice when all my other options had run

out

I hope everything works out for you whatever happens, and I'd say

that soon enough you'll be getting a ci, whether or not you need to

test the stronger aids.

Good luck and please keep us posted.

Cheers,

Silly

May 25, 2003

I agree Silly.

It was a no brainer for me, too. I got 0% on the words, I couldn't hear him say

" ready " before the words either. I knew a sound was there though. So a HA was

not going to help me in either ear. I had to go through one test and I didn't

hear anything. I ask my audi if it was working and she said yes and the test

were required so I had to sit there and listen to nothing.

I also love my bilateral CIs. It was my last shot to be able to hear so I took

it and it was the right decision.

Sharon Myers

sillygirl49677 <silly1@...> wrote:

If it was me, and I had a chance to hear better without the ci, I'd

take a shot at it; what's a month or so compared to making a decision

that will affect the rest of your life?

For me, it was a no brainer.. I had just 5% residual hearing when I

was implanted and totally missed everything except for maybe 1 or 2

words in testing at my evaluation.

Am I happy with my ci? You bet I am.. Best choice I ever made in

my life, but it was a last choice when all my other options had run

out

May 25, 2003

It was not your last shot. The next step would have been ABI (Audio Brainstem

Implant). ABI has come a long way in the last couple years. At first you just

heard noises like doorbells, smoke alarms, microwave buzzers etc, but now some

are even understanding words, listening to music, talking on the phone. The

next step they are working on is the PABI (penetrating ABI ) in which the

electrodes actually penetrate into the brainstem and give better sound. The

Houses Ear Institute has been working with this for awhile and many of my NF2

friends have the ABI. I was lucky, the doctors were able to save what little

hearing I had left when my acoustic neuromas were removed so I am able to have a

cochlear implant. Now I am anxiously awaiting for it to be turned on May 30th.

I wasn't to excited before but after listening to y'all talking how great it has

been, I have been getting really excited. I have the Med-El that is made in

Austria since that one will allow me to do my yearly MRI's in an open MRI

without removing a magnet.

For those of you out there that have problems with phone conversation, Ultratec

has developed the CapTel phone which is in trial usage in many states right now.

This is truly different than any relay phone call you have ever done. The relay

person does not participate in your phone call except to listen then repeat it

into a voice recognition program and it then it show up on a 5 line captioning

screen on the phone. The relay is trained to do this as you speak so there is

only about a 2 second delay so you can listen and read at the same time. The

phone is great especially for those who have some hearing but cannot understand

all the words. Check out www.ultratec.com and look under new technology or

http://www.ultratec.com/info/CapTel.html

Life is getting better for the HoH and the deaf

Mike

Re: Re: What should I do??

I agree Silly.

It was a no brainer for me, too. I got 0% on the words, I couldn't hear him

say " ready " before the words either. I knew a sound was there though. So a HA

was not going to help me in either ear. I had to go through one test and I

didn't hear anything. I ask my audi if it was working and she said yes and the

test were required so I had to sit there and listen to nothing.

I also love my bilateral CIs. It was my last shot to be able to hear so I took

it and it was the right decision.

Sharon Myers

sillygirl49677 <silly1@...> wrote:

If it was me, and I had a chance to hear better without the ci, I'd

take a shot at it; what's a month or so compared to making a decision

that will affect the rest of your life?

For me, it was a no brainer.. I had just 5% residual hearing when I

was implanted and totally missed everything except for maybe 1 or 2

words in testing at my evaluation.

Am I happy with my ci? You bet I am.. Best choice I ever made in

my life, but it was a last choice when all my other options had run

out

May 25, 2003

i will agree get a second opinion before buying the aids and as far

as " this is as good as it gets " .... well maybe it's as good as it gets using

aids but not with a CI i was told it would take a year or more to

understand speech and then maybe another year to use the phone but it was

more like 2 months before i began to pick out words i understood and this past

december was my first time on the phone in 25 years at first i could

guess what was said ... but now i can hold a conversation i don't think

your

aids will help much more for phone usage but from my own experience i know

my CI works wonders

that's a lot of money to put out for aids with limited use i would get

at least another opinion

susan

May 25, 2003

Elsa,

Can you find out your speech comprehension scores with these aids? Either

you fall into the specifications or you don't.

N24C

2000

May 25, 2003

I have had the new aids for a month and they do help. I hear birds, cars, and do

quite well if only one person is talking to me. If the convesation is more than

one I'm lost. At restaurants I turn it off. TOO noisy! The audie also let me

try boots for my aids and a microphone. I " ve tried it once in a restaurant, but

I kept picking up peoples cell phones. I still could not hear my family with the

static I was picking up. I still do not know how the microphone is suppose to

work on my phone. My phone has an audio ouput but when I hook up the microphone

and pick up the headset, there is no dail tone.There is a way that the voice is

suppose to go straight to the microphone and then to the boot on my aids. I " ll

have to ask her about that. Aids help alittle on the phone with people I know.

My job requires i use the phone so I'm getting nervous about returning to work.

If it is a voice that I do not know and they talk fast, forget it, all I hear

is garble and that's with the new state of the art aids. I'm on sick leave right

now due to a hysterectomy that I had 4/29. I work at a school so I do not need

to return until the middle of August.

sillygirl49677 <silly1@...> wrote:Elsa,

As a cochlear implant user and an advocate who advises many about

many cochlear implants, I agree with Ruth as well. When I talk to

someone and they tell me their audie has recommended a trial period

with different hearing aids, I advise them to try it.. Most trials

are about a month and You (and your audie) should know by that time

if the aids are going to benefit you; in fact, in cases where people

have fair residual hearing, it's often required to go with the

hearing aid trial first.

If it was me, and I had a chance to hear better without the ci, I'd

take a shot at it; what's a month or so compared to making a decision

that will affect the rest of your life?

For me, it was a no brainer.. I had just 5% residual hearing when I

was implanted and totally missed everything except for maybe 1 or 2

words in testing at my evaluation.

Am I happy with my ci? You bet I am.. Best choice I ever made in

my life, but it was a last choice when all my other options had run

out

I hope everything works out for you whatever happens, and I'd say

that soon enough you'll be getting a ci, whether or not you need to

test the stronger aids.

Good luck and please keep us posted.

Cheers,

Silly

May 25, 2003

Elsa,

Did you explain all this to the audiologist because it

really sounds as if you've given the aids a try.

Alice

--- Elsa Nunez <ec_nunez@...> wrote:

> I have had the new aids for a month and they do

> help. I hear birds, cars, and do quite well if only

> one person is talking to me. If the convesation is

> more than one I'm lost. At restaurants I turn it

> off. TOO noisy! The audie also let me try boots for

> my aids and a microphone. I " ve tried it once in a

> restaurant, but I kept picking up peoples cell

> phones. I still could not hear my family with the

> static I was picking up. I still do not know how the

> microphone is suppose to work on my phone. My phone

> has an audio ouput but when I hook up the microphone

> and pick up the headset, there is no dail tone.There

> is a way that the voice is suppose to go straight to

> the microphone and then to the boot on my aids. I " ll

> have to ask her about that. Aids help alittle on the

> phone with people I know. My job requires i use the

> phone so I'm getting nervous about returning to

> work. If it is a voice that I do not know and they

> talk fast, forget it, all I hear is garble and

> that's with the new state of the art aids. I'm on

> sick leave right now due to a hysterectomy that I

> had 4/29. I work at a school so I do not need to

> return until the middle of August.

>

> sillygirl49677 <silly1@...> wrote:Elsa,

> As a cochlear implant user and an advocate who

> advises many about

> many cochlear implants, I agree with Ruth as well.

> When I talk to

> someone and they tell me their audie has recommended

> a trial period

> with different hearing aids, I advise them to try

> it.. Most trials

> are about a month and You (and your audie) should

> know by that time

> if the aids are going to benefit you; in fact, in

> cases where people

> have fair residual hearing, it's often required to

> go with the hearing aid trial first.

May 25, 2003

That is the dicision that I will have to make soon. I have tried the aids on for

30 days. I think I will be seeing the audie this week or next to purchase the

aids, boots and microphone for about 7,400.00. Maybe she is right and the dr.

is wrong and this is as good as it gets. Maybe I should be more realistic. I

still worry about the future since I will probably be out of a job.

Ruth Ilean Fox <rifox@...> wrote:Elsa, It is not a bad option to let the

audiologist see if she can fit you