Cochlear implant... anyone had any problem??

[Guest guest]

Hi everybody!

So cochlear implant it is for my Little Warrior!

Now, only a month away from the first appointment where Aidan will

undergo more and more tests, scans, etc. I thought that who better to

ask about all my worries but you guys..

I know that Aidan has " abnormal inner ears " so I fear that will be a

problem when deciding to go ahead with the CI.

I would ask you all please to let me know if you had/heard of any

complication, bad experience, etc.. anything that went wrong with the CI.

(I tried to look for the messages regarding this topic instead of

posting this new one but it just says " server is busy " .. sorry then if

it's a repetitive topic..)

I know it's a major operation wiht LOTS of INTENSIVE rehabilitation

afterwards.. and I'm awful worried.. so, please, I'm looking forward

to all your input about this matter..

Thank you so much!!!!!

, Aidan's worried mum

[Guest guest]

Hi ,

I am no expert on cochlear implantation but I will tell you of our

experience which does include complications = but also success.

My daughter (Adele) has a Cochlear Freedom on the right side,

opposite her facial palsy. Most kids with CHARGE seem to have their

implants on the palsy side - but Adele's nerve was too thin.

Her right-side nerve was also questionable and the CT scans and MRIs

were not conclusive. We did a procedure call " prom stim " or EABR

under general anesthesia to get a more exact measurement. They said

her right side nerve was " almost normal. "

We proceeded with implant surgery but it was stopped mid-way because

a major blood vessel (lateral sinus, i think) was blocking the

entrace to the cochlea. Evidentally, this vein was not seen on

previous imaging. Anyway, it was a little scary for all involved and

very disappointing.

A second surgeon stepped in and thought he had a way to get around

the vein. About a month later, the two docs went in together and

successfully placed the implant. The only complication was some extra

blood was stuck under the incision and had to be drained under

general anestesia a few days later.

Now, it has been a little over a year since the implant was turned

on. Adele can hear well enough to access speech (she tests within the

speech banana) but she does not have the verbal skills normally

expected with a successful implantation. We are now using sign

language to communicate - but are still hopeful she will be more

verbal some day.

Overall, we are very happy with her having an implant, but it has not

gone as smoothly as we would have liked.

I am happy to give you more details if it would be helpful. Just let

me know.

--

mom to Adele (almost 3) and Margo (5 months)

www.brandrup.com

username: baby

password: sugar

>

> Hi everybody!

>

> So cochlear implant it is for my Little Warrior!

> Now, only a month away from the first appointment where Aidan will

> undergo more and more tests, scans, etc. I thought that who better

to

> ask about all my worries but you guys..

>

> I know that Aidan has " abnormal inner ears " so I fear that will be a

> problem when deciding to go ahead with the CI.

>

> I would ask you all please to let me know if you had/heard of any

> complication, bad experience, etc.. anything that went wrong with

the CI.

>

> (I tried to look for the messages regarding this topic instead of

> posting this new one but it just says " server is busy " .. sorry then

if

> it's a repetitive topic..)

>

> I know it's a major operation wiht LOTS of INTENSIVE rehabilitation

> afterwards.. and I'm awful worried.. so, please, I'm looking forward

> to all your input about this matter..

>

> Thank you so much!!!!!

>

>

> , Aidan's worried mum

>

[Guest guest]

Hi Pat,

Lots of kids with CHARGE have that messed up inner ear, including of course

our . So messed up that she only has one auditory nerve so there was

no umming and urring about which side to implant, although it was a little

worrying that her facial palsy side was the one without the nerve so other

side had to be implanted. The side with the nerve had a thin one so lot of

angst about whether worth implanting (on our part I hasten to add. The doc

was keen as anything to the point of worrying us with her keen-ness). Scans

did not reveal, and we tried to tell the surgeon but docs know best (!) that

her facial nerve was all over the place. Surgery revealed that we were

right and he came out eating humble pie as he had to work really hard to

locate her facial nerve to ensure that he did not damage it in surgery. On

surgery, he also found that the cochlear did not have as many turns as it

should (can't recall details right now) so it was really hard to insert the

implant and at one time he thought he may not be able to.

Other than that, all was well. She was about 4/5 hours in theatre and home

the following day. She is now clearly responding to her name so who knows

what else she can hear? She has demonstrated in tests that she can hear all

the ling sounds (I think they correspond to the speech banana) but in real

life she is much less responsive.

You are right, lots of rehabilitative stuff to contend with. Took us 2

years from the time the audi suggested implant to agree to it and you may

recall my angst on this list but now it all is so worth it for . We

still use sign with her but we always have. To be honest, I find it much

easier to say something to her verbally and then follow it with sign knowing

that she understood the sign and can relate the verbal (if she can hear it)

to the sign she knows. She has had the implant for nearly one year now.

Good luck with all the tests and decision making but I would still say sign

is good as our little ones do not necessarily respond in the traditional way

to the implant. wouldn't even wear it to begin with and it took

lots of bribery (several weeks!) to convince her. I think they have so much

else to contend with they can't give full attention to the one area while

they try to feed, walk, balance, breathe, grow etc.

Any more Q's, will be glad to answer to the best of our experience.

Best...........

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Hi -

What was her hearing loss before the implant?

We're in the process too and I'm not sure what we'll do. Couldn't do

imaging this week because of pneumonia so our time frame got pushed

back.

Janay

Rasha's Mom

> >

> > Hi everybody!

> >

> > So cochlear implant it is for my Little Warrior!

> > Now, only a month away from the first appointment where Aidan

will

> > undergo more and more tests, scans, etc. I thought that who

better

> to

> > ask about all my worries but you guys..

> >

> > I know that Aidan has " abnormal inner ears " so I fear that will

be a

> > problem when deciding to go ahead with the CI.

> >

> > I would ask you all please to let me know if you had/heard of any

> > complication, bad experience, etc.. anything that went wrong

with

> the CI.

> >

> > (I tried to look for the messages regarding this topic instead of

> > posting this new one but it just says " server is busy " .. sorry

then

> if

> > it's a repetitive topic..)

> >

> > I know it's a major operation wiht LOTS of INTENSIVE

rehabilitation

> > afterwards.. and I'm awful worried.. so, please, I'm looking

forward

> > to all your input about this matter..

> >

> > Thank you so much!!!!!

> >

> >

> > , Aidan's worried mum

> >

>

[Guest guest]

Pat,

Our experience was similar to 's and Flo's. got her CI when she

was 18 months old. The surgery took about 6 hours total. When the surgeon

first went in, he found she had a lot of scar tissue in her inner ear that he

couldn't see before. So he had to remove all of that first before he could even

begin the CI work. Then when he went in to place the CI, he found that 's

facial nerve ran parallel, and very close, to her auditory nerve. So it was a

very delicate process for him because he had be so careful not to sever the

facial nerve. Also, 's cochlea only had 1 1/2 turns as opposed to the

normal 2 1/2. The surgeon did at least know that piece of it before the

surgery--he could see that on her MRI--so he was prepared to not be able to

insert all of the normal 24 electrodes. But it did turn out that he was able to

insert 22 of the 24, which he was pretty amazed at.

's progress with the implant has also been slow, but she does test within

the speech banana in the sound booth with it, she turns to her name and favorite

songs, etc. She is still nonverbal--we use signs and pictures with her. She

went through a very long phase of not wanting to wear the implant. We had to

persist on that with her for a couple of years. She now wears it most of the

time, but if she's engrossed in an activity such as looking at books, or if

she's feeling bad, she will take it off. We respect that and let her drive

those decisions. She has had the implant long enough now to understand its use

and make decisions on when she needs a break from it.

Just realize that, like all things CHARGE, the process will likely be slow and

will require patience and persistence, but the rewards will come.

, mom to (5)

http://kauffmanlak.blogspot.com/

---------------------------------

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Excuse my ignorance but what does " speech banana " mean?

I'm quite surprised about the verbal stuff.. I thought once the

children could hear through the implant, it was going to be pretty

fast (well, a year or so) for them to start trying to talk!!

Aidan right now, with only hearing aids, can say " mama " , " no " and

" moo " (for cow) very clearly.

Also turns to his name and some other sounds, and he makes vowel or

consonant sounds imitating " hello " , " cuac cuac " (for duck) " baa " (for

sheep) and even makes raspberries every time he grabs a car.

All this apart from signing, of course. He can now sign over 10 signs..

To be honest, I was rather shocked when they confirmed Aidan had

severe to profound hearing loss.. I didn't expect the loss to be that

bad at all!!

-, mum to Aidan (2 in April)

[Guest guest]

Pat,

Did the audiologist ever give you one of those charts that plots hearing loss

(in Decibles) vs. frequency of different sounds when they were explaining

Aiden's hearing loss? The one I have has pictures of where typical everyday

noises fall on the chart--like a jet engine, lawnmower, faucet running, the

breeze--as well as the different speech sounds. The speech sounds are clusterd

together in a portion of the chart, and if you draw a line around where they all

fall, the resultant shape looks like a banana, hence the clever name " speech

banana " (although maybe it's just a US thing). Here is a link to one of these

charts.

www.gohear.org/image/graph.gif

, mom to Evan, 19 months (also severe-profound and profound loss, lots of

babbling but no " words " yet; lots of hand babbling, but minimal meaninful signs

yet)

Pat wrote:

Excuse my ignorance but what does " speech banana " mean?

I'm quite surprised about the verbal stuff.. I thought once the

children could hear through the implant, it was going to be pretty

fast (well, a year or so) for them to start trying to talk!!

Aidan right now, with only hearing aids, can say " mama " , " no " and

" moo " (for cow) very clearly.

Also turns to his name and some other sounds, and he makes vowel or

consonant sounds imitating " hello " , " cuac cuac " (for duck) " baa " (for

sheep) and even makes raspberries every time he grabs a car.

All this apart from signing, of course. He can now sign over 10 signs..

To be honest, I was rather shocked when they confirmed Aidan had

severe to profound hearing loss.. I didn't expect the loss to be that

bad at all!!

-, mum to Aidan (2 in April)

---------------------------------

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Hello Janay,

I don't remember the exact measurements of Adele's hearing before

getting an implant - but it was considered a " profound " loss in both

ears, even with aids.

The " prom stim " test showed that her left nerve was not likely to

provide any sound info to the brain. Her right side (now implanted)

was never better than " profound loss " either. After of wearing aids

for almost a year, she never mimicked any sounds and barely showed

response to loud noisemakers.

In some ways her level of loss made the decision to try an implant

easier - but I will say she is responding extremely well to sign

language and it is awesome to see her communicate.

I hope Rasha gets over pneumonia soon and that you are able to get

your imaging.

--

mom to Adele (almost 3) and Margo (5 months)

www.brandrup.com

username: baby

password: sugar

> > >

> > > Hi everybody!

> > >

> > > So cochlear implant it is for my Little Warrior!

> > > Now, only a month away from the first appointment where Aidan

> will

> > > undergo more and more tests, scans, etc. I thought that who

> better

> > to

> > > ask about all my worries but you guys..

> > >

> > > I know that Aidan has " abnormal inner ears " so I fear that will

> be a

> > > problem when deciding to go ahead with the CI.

> > >

> > > I would ask you all please to let me know if you had/heard of

any

> > > complication, bad experience, etc.. anything that went wrong

> with

> > the CI.

> > >

> > > (I tried to look for the messages regarding this topic instead

of

> > > posting this new one but it just says " server is busy " .. sorry

> then

> > if

> > > it's a repetitive topic..)

> > >

> > > I know it's a major operation wiht LOTS of INTENSIVE

> rehabilitation

> > > afterwards.. and I'm awful worried.. so, please, I'm looking

> forward

> > > to all your input about this matter..

> > >

> > > Thank you so much!!!!!

> > >

> > >

> > > , Aidan's worried mum

> > >

> >

>

[Guest guest]

Thanks .

Rasha's loss is severe to profound in both ears and even with aids

gives no response to sound. Flash a light and you can get her

attention.

I'm starting to agree with your point about the degree of loss

making the decision easier. As I accept the fact that she doesn't

respond to sound with the aids, giving the implant a try sounds like

a good idea. I just a have fear of surgery.

I saw Rasha sign " more " two days ago as she was playing with her

hands. I was really excited!! With or without an implant, I still

want her to learn sign.

Janay

> > > >

> > > > Hi everybody!

> > > >

> > > > So cochlear implant it is for my Little Warrior!

> > > > Now, only a month away from the first appointment where

Aidan

> > will

> > > > undergo more and more tests, scans, etc. I thought that who

> > better

> > > to

> > > > ask about all my worries but you guys..

> > > >

> > > > I know that Aidan has " abnormal inner ears " so I fear that

will

> > be a

> > > > problem when deciding to go ahead with the CI.

> > > >

> > > > I would ask you all please to let me know if you had/heard

of

> any

> > > > complication, bad experience, etc.. anything that went wrong

> > with

> > > the CI.

> > > >

> > > > (I tried to look for the messages regarding this topic

instead

> of

> > > > posting this new one but it just says " server is busy " ..

sorry

> > then

> > > if

> > > > it's a repetitive topic..)

> > > >

> > > > I know it's a major operation wiht LOTS of INTENSIVE

> > rehabilitation

> > > > afterwards.. and I'm awful worried.. so, please, I'm looking

> > forward

> > > > to all your input about this matter..

> > > >

> > > > Thank you so much!!!!!

> > > >

> > > >

> > > > , Aidan's worried mum

> > > >

> > >

> >

>

[Guest guest]

Thanks a lot, !

I'll have a look to that link as I was never given any chart..

-Pat

>

> Excuse my ignorance but what does " speech banana " mean?

>

[Guest guest]

Thank you everybody that replied!

So, basically, they might find a hell of a mess inside Aidan's ear

when implanting but at the end, it'll turn out fine and be completely

worthwhile.. providing everything goes well, obviously.. (and why

shouldn't it??)

I'm quite nervous at the moment about this.. normal stuff, I guess..

Thanks again for your input, support and advice..

I'll see if I can get some sleep now.. for a change..

-