Re: Bi. Lateral approval

[Guest guest]

,

Get a second opinion, and a third, if necessary.

M.

[Guest guest]

If your child very young, he should save one ear for future technology,

Try to repair the implanted one.

clforest87 <cforest4@...> wrote:

Hi everyone,

Its been a long time since I posted anything here. Somehow I turned

into a lurker. My son Peyton had surgery 12/04 was turned on 1/05.

Initially he was doing great. Then past 6 months or so things started

acting funny. He was saying what all the time (even after a map),he

became very sound sensitive at times. For example he couldn't stand

loud noises or yelling at all. Then even softer sounds would bother

him. For example last night our dog came in from outide. He shook all

over and his tags rattled. Peyton covered his ears and yelled at the

dog to be quiet. Thats not a noise I would call loud.

He has had 4 procesors replaced , went through 2 differnt brands

of FM's (brand new) at school. They both were sent back for repair 3

times because he said he couldnt hear anything after a week or so. He

also has many times throughout the day that his voice gets louder. I

always ask can you hear me he says yes but with loud voice. Then as

quickly as it starts it can stop.

We just had a CT-Scan that said implant was in position and

looked fine. Then had an integrity test done. The Reps. had audi turn

off 4 electrodes that were working but they were getting " funny "

readings from. They then advised for him to get 2nd ear implanted,

then after 2 months get first one done again. Now why if his CI is

working? Any thought on this?

We also had been thinking about 2nd implant for him. He had been

doing so well ( till above issues showed up). I assumed our ins. co

would deny it. I had all my research papers ready for the appeals.

Well to my complete shock it was approved in 2 days. I'm sure we are

going to go ahead with the 2nd surgery even with problems with the

first one. I'm so afraid for him to be without hearing. Our plan is

to have 2nd one done asap then to further address problems with first

one. I know in my heart something is wrong. Another Dr. I spoke with

said it sounds like implant failure to him or that it never was

properly inserted to begin with. If anyone remembers our initial

mapping was horrible. The audi wasn't able to get any sound to him at

all. It was a complete nightmare. Two days later (new audi) we had

mapping that went perfect. Our current audi said the first one never

adjusted his pulse width. I guess they are very wide. The bad thing

is the first audi is the one that checked it during surgery and said

it was working fine. Then why didn't it at first map? I don't regret

have CI done for one minute. Peyton is able to hear so much more then

he ever could with HA's. I'm hoping the adjustment period for the 2nd

one will be fast so we can have him hearing while we figure out whats

up with the first one. I'm almost scared to do alot of testing on the

first one because I'm thinking my ins. co will change their minds on

the 2nd if they believe the first one isn't working.

Any thoughts from anyone would be appreciated. BTW I live in Michigan

and have HAP for medical in case anyone thinking of going bi-lat.

__________________________________________________

[Guest guest]

> If your child very young, he should save one ear for future technology,

> Try to repair the implanted one.

>

>

,

That is one way of looking at it.

My perspective is a different one. IF a child is a good candidate for a

second implant, I would not hesitate to go ahead with bilateral

implantation. The little ones need to learn language NOW, they need to be

successful at school NOW, not in 10, 20, 30 or more years when maybe

completely new technology will be available (like restoring hair cells

etc.).

My son was implanted bilaterally at the age of 10 months and he functions as

a kid with " normal hearing " in ALL situations. Background noise does not

bother him at all and he has never used an FM system.

Sabine in Cologne, Germany with

(12/98),

Christian (4/00, great hearing with 2 CIs since 4/01 after meningitis),

Florian (6/02) and

Tobias (8/04) -

all growing up bilingually German/English

[Guest guest]

I agree that there is nothing wrong with going bilateral now as opposed to

waiting for future technology. But that is what my opinion is for me. On the

forum, we need to be careful to distinguish telling someone what to do and

letting them know what we would do for ourselves. We are here to share and

describe, not to prescribe.

In a message dated 6/17/2006 4:44:24 AM Eastern Standard Time,

CLEO@... writes:

> If your child very young, he should save one ear for future technology,

> Try to repair the implanted one.

>

>

,

That is one way of looking at it.

My perspective is a different one. IF a child is a good candidate for a

second implant, I would not hesitate to go ahead with bilateral

implantation.

[Guest guest]

> Hi everyone,

> Its been a long time since I posted anything here. Somehow I turned

> into a lurker. My son Peyton had surgery 12/04 was turned on 1/05.

> Initially he was doing great. Then past 6 months or so things

started

> acting funny. He was saying what all the time (even after a map),he

> became very sound sensitive at times. For example he couldn't stand

> loud noises or yelling at all. Then even softer sounds would bother

> him. For example last night our dog came in from outide. He shook

all

> over and his tags rattled. Peyton covered his ears and yelled at

the

> dog to be quiet. Thats not a noise I would call loud.

> He has had 4 procesors replaced , went through 2 differnt brands

> of FM's (brand new) at school. They both were sent back for repair

3

> times because he said he couldnt hear anything after a week or so.

He

> also has many times throughout the day that his voice gets louder.

I

> always ask can you hear me he says yes but with loud voice. Then as

> quickly as it starts it can stop.

> We just had a CT-Scan that said implant was in position and

> looked fine. Then had an integrity test done. The Reps. had audi

turn

> off 4 electrodes that were working but they were getting " funny "

> readings from. They then advised for him to get 2nd ear implanted,

> then after 2 months get first one done again. Now why if his CI is

> working? Any thought on this?

> We also had been thinking about 2nd implant for him. He had been

> doing so well ( till above issues showed up). I assumed our ins. co

> would deny it. I had all my research papers ready for the appeals.

> Well to my complete shock it was approved in 2 days. I'm sure we

are

> going to go ahead with the 2nd surgery even with problems with the

> first one. I'm so afraid for him to be without hearing. Our plan is

> to have 2nd one done asap then to further address problems with

first

> one. I know in my heart something is wrong. Another Dr. I spoke

with

> said it sounds like implant failure to him or that it never was

> properly inserted to begin with. If anyone remembers our initial

> mapping was horrible. The audi wasn't able to get any sound to him

at

> all. It was a complete nightmare. Two days later (new audi) we had

> mapping that went perfect. Our current audi said the first one

never

> adjusted his pulse width. I guess they are very wide. The bad thing

> is the first audi is the one that checked it during surgery and

said

> it was working fine. Then why didn't it at first map? I don't

regret

> have CI done for one minute. Peyton is able to hear so much more

then

> he ever could with HA's. I'm hoping the adjustment period for the

2nd

> one will be fast so we can have him hearing while we figure out

whats

> up with the first one. I'm almost scared to do alot of testing on

the

> first one because I'm thinking my ins. co will change their minds

on

> the 2nd if they believe the first one isn't working.

> Any thoughts from anyone would be appreciated. BTW I live in

Michigan

> and have HAP for medical in case anyone thinking of going bi-lat.

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

I'm so sorry that Peyton is having difficulties and hope they are

resolved quickly.

I have to agree with you that it's good to take advantage of the

available technology now while Peyton is young, especially due to

the ossification he has in the cochleas.

My opinion s that if we wait for newer technology, we'll always be

waiting because all the ci companies are constantly working on

something new and improved.

If Peyton isn't having implant failure, it's possible that he could

have recruitment which is when a person perceives volume increases

much faster than the actual volume increase. This results in sounds

being too loud to tolerate.

I know of at least one person on this forum who suffered from

recruitment and was explanted several years ago and implanted in the

opposite ear where there has been no problem that I'm aware of.

This is just a thought from me and I've no clue if this could be

Peytons problem... was just something that came to mind especially

when you were told that his implant was functioning properly.

Here's wishing you all the very best as you go into Peyton's second

implant.. I hope it goes well.

Please keep us posted.

Hugs,

Silly MI

In , " clforest87 " <cforest4@...> wrote:

>

>:

> >

> I've thought of that myself for the past year and a half. In my

> opinion if and when better technology is available, Peyton will be

a

> grown man. I also feel we need to take advantage of the technology

> that is available today. Also he has ossification in both

cochleas.

> The Dr. was able to get thru it with the first surgery but I'm

afraid

> if we wait to long the second ear won't be usable.

>

> -Mother to Peyton future catcher for the Detrot Tigers

>

>

>

>

> >

> >

> >

[Guest guest]

Wouldn't you think with today's technology of unilateral or bilateral

implantation that future technology would be taking this into consideration

so all may benefit in the years to come?

[Guest guest]

Hi, ,

I'm sorry Peyton is experiencing trouble with his CI. But I have to add

my voice to the group that says to go for the second implant now. You can

then go back and see what to do about the first one, even going to another

center for a second opinion. As long as you trust the surgeon and insurance is

on

your side now, don't hesitate. You see the obvious opportunity to the CI,

it's just a matter of fine tuning the first one. Even if it is found that it

has

to be replaced, reimplantation is much less traumatic because the area is

already prepared to accept the implant, no additional drilling necessary. Try

to

take one step at a time, not thinking so far ahead. continue to write in and

we will help you along the way. Good luck!

) Jackie

Implanted - right ear - Oct.2002 - Nucleus 24/3G

Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G

Implanted - left ear - Sept.2005 - Nucleus-Freedom

[Guest guest]

I lose hearing 75% at age 20 due to antibiotics, after 2 years of

using my CI I wasn't able to understand much. If the kid is

young and profound deaf, he will not understand much, no matter

if he undergoes 2 CI. Technology for hair cell restoration will come

as well more efficient CI

This is my HONEST advice not a prescription

Ci92000@... wrote:

I agree that there is nothing wrong with going bilateral now as

opposed to

waiting for future technology. But that is what my opinion is for me. On the

forum, we need to be careful to distinguish telling someone what to do and

letting them know what we would do for ourselves. We are here to share and

describe, not to prescribe.

In a message dated 6/17/2006 4:44:24 AM Eastern Standard Time,

CLEO@... writes:

> If your child very young, he should save one ear for future technology,

> Try to repair the implanted one.

>

>

,

That is one way of looking at it.

My perspective is a different one. IF a child is a good candidate for a

second implant, I would not hesitate to go ahead with bilateral

implantation.

[Guest guest]

I am sorry that your own experiences have made you bitter, .

The C.I.'s of today are more than capable of looking after future

development. If I had a young child, I would go ahead with whats

available today, its been tried and tested for over 20 years and has

been refined along the way. Tomorrow never comes.

Ted F.

>

> I lose hearing 75% at age 20 due to antibiotics, after 2 years of

> using my CI I wasn't able to understand much. If the kid is

> young and profound deaf, he will not understand much, no matter

> if he undergoes 2 CI. Technology for hair cell restoration will

> come as well more efficient CI

> This is my HONEST advice not a prescription

>

[Guest guest]

,

I, too, am sorry to hear you do not seem to be happy with your experience

with your ci.

But please, please refrain from making generalizations based on your

experience.

We all know that there is no guarantee when you decide to go for an implant

(either for yourself or, as in our case, for our child) but I feel I have to

comment on one of your sentences:

> using my CI I wasn't able to understand much. If the kid is

> young and profound deaf, he will not understand much, no matter

> if he undergoes 2 CI.

That is just not true and there are so many examples to prove the opposite.

While the outcome of implantation might be different for every child (as for

adults), just because a child is young and profoundly deaf does NOT mean he

or she will not benefit greatly from an implant.

My son lost his hearing at the age of 7 months, received two implants at the

age of 10 months and now, over 5 years later, functions as a child with

normal hearing. That is of course only OUR experience but it goes to show

what is possible even for young and profoundly deaf children.

All the best for you,

Sabine in Cologne, Germany with

(12/98),

Christian (4/00, great hearing with 2 CIs since 4/01 after meningitis),

Florian (6/02) and

Tobias (8/04) -

all growing up bilingually German/English

[Guest guest]

I have to agree with Sabine and will add that kids usually do GREAT because they

have LESS hearing memory than adults do. Her son, being deafened as an infant

totally learned to hear with his implants...he has no confusion with prior

hearing only purely regained implant hearing.

, your difficulties may be with how long you were deafened, your cause of

deafness, or more especially the strategies and maps....maybe even your audi,

but to make a blanket statement that kids won't do well with CI is wrong and a

shame. These little kids deserve every possibility to hear and you should not

give up quickly on YOUR quest for CI hearing. Good luck in the future!

Debra Beckmann

deafened L 1998

deafened R 2002

CI June 2002

CI device failure 2003