Help

May 19, 1999

In a message dated 5/19/99 7:59:38 PM Eastern Daylight Time,

listenup@... writes:

<< You may want to join

ci-circle and post the question on that group. I know there are a number of

parents there whose kids have mondini's and have been implanted. Not sure if

it was that group or ci-forum, but recently there was a post from someone

whose child only had 1 (as I recall) turn to the cochlea, and they posted

because their surgeon somehow managed to get a full insertion of the

electrodes. >>

The surgeon at UNC that specializes in malformed ear parts has never missed

full insertion on a Mondini's child! VERY impressive. Some on the CICIRCLE

parents have Mondini's kids that were recently implanted. Try that list.

Elaine

May 19, 1999

>Hello everyone, I need some help.My son has started the evaluation for

>the cochlear implant.He has a mondini malformation, and I was told by te

>center that his prognosis would not be as good as someone that has a

>full cochlea.I was wondering if there are any kids off this list that

>have mondini and the implant.How are they doing?

From the British Journal of audiology:

Cochlear implants and Mondini dysplasia

http://www.ent-news.com/vol6_3.dir/cur_lit.dir/article19.html

From the archives of Otolaryngology – Head & Neck Surgery :

Histopathological Features of a Cochlear Implant and Otogenic Meningitis in

Mondini Dysplasia

http://www.ama-assn.org/sci-pubs/journals/archive/otol/vol_124/no_4/ocn7084a

..htm

(If the above line splits, you will have to cut and paste the 2 lines

together)

Our son has mild Mondini's, and he's doing very well. He's 3 weeks post

hook-up now, and if he's not thinking about it, he can discriminate all the

Ling sounds. When he knows he's doing it though, he tries to hard and misses

about half of them. He's hearing so many things I never thought he'd be able

to hear, like the turn signal blinkers in the car.

>Is the benefit they get

>enough for speech and hearing?

Within 1 week of turn-on, my son's voice was at a normal level (no longer

shouting most of the time), his articulation was clearer, he was using his

" S " sound more of the time, and I can understand him when he reads to me.

Since his hearing mostly slipped out of the range of his hearing aids, he's

had to concentrate so hard to make his speech understandable that when he

reads out loud and wasn't concentrating on his speech, you couldn't

understand him. His pronunciation of many words is better too. For the last

year or so he's been pronouncing things as they are spelled.

We were told to expect it to take a year or more for our son to reach the

level he was at prior to implantation because he did have some residual

hearing (but not much). He's already doing better with one hearing aid and

the implant than he did with 2 hearing aids. With only the implant he still

has a bit of a way to go to get to where he was pre-implant, but not all

that far. With hearing aid and implant, I only have to repeat myself a few

times a day, and only have to repeat it 1-2 times. Pre-implant, I usually

had to repeat myself 3-6 times (not repeating was an exception, not the

rule). With implant only, I usually have to repeat myself 5-8 times - but

he's only been hooked up 3 weeks. I expect this to get much better. At 2

weeks post hook-up he was tested in the sound booth. With a closed set of

words (numbers) his word discrimination was at 90% at 50dB.

Since my son is 12 we were told before the implant not to expect too much

because older kids often have a difficult time, especially if they were born

with the hearing loss. Our son's school helped us talk the implant center

into doing the implant.

>My son is in an AV program, I need to

>know if this will be enough for him to communicate effectively.

Each child is different and how your child will respond to the implant

depends on a number of different things.

>Also, how

>clear is these kids speech?

My son is extremely intelligible, but then it was before the implant. If you

are curious as to how intelligible he is, feel free to call me in the

evening (when he'll be home) before Saturday.

>Please, any input would be appreciated, I

>walked out of the center feeling as there was no hope for my son.His

>speech therapist told me not to worry.She said that the implant center

>is excellent but they are not very compassionate or caring.She said they

>are kind of gloom and doom.My son also has hand deformities which would

>limit his use of sign language.So I'm very nervous about him being able

>to communicate effectively.Thankyou for any help!!!

Because there are so many variables, there are no promises with the cochlear

implants. But Mondini's shouldn't rule out an implant. You may want to join

ci-circle and post the question on that group. I know there are a number of

parents there whose kids have mondini's and have been implanted. Not sure if

it was that group or ci-forum, but recently there was a post from someone

whose child only had 1 (as I recall) turn to the cochlea, and they posted

because their surgeon somehow managed to get a full insertion of the

electrodes. They are now waiting for hook-up. Is there maybe another center

you could check out?

Feel free to contact me if you have further questions.

Kay

May 19, 1999

Thankyou Kay!

Sherri

May 19, 1999

At 07:15 PM 5/19/99 -0400, Sherri Porter wrote:

>From: Sherri02@... (Sherri Porter)

>

>Hello everyone, I need some help.My son has started the evaluation for

>the cochlear implant.He has a mondini malformation, and I was told by te

>center that his prognosis would not be as good as someone that has a

>full cochlea.I was wondering if there are any kids off this list that

>have mondini and the implant.How are they doing? Is the benefit they get

>enough for speech and hearing? My son is in an AV program, I need to

>know if this will be enough for him to communicate effectively.Also, how

>clear is these kids speech? Please, any input would be appreciated, I

>walked out of the center feeling as there was no hope for my son.His

>speech therapist told me not to worry.She said that the implant center

>is excellent but they are not very compassionate or caring.She said they

>are kind of gloom and doom.My son also has hand deformities which would

>limit his use of sign language.So I'm very nervous about him being able

>to communicate effectively.Thankyou for any help!!!

> Sherri Porter

I know a few kids with Mondini's that have CIs. All of them had hearing

aids, and all of them had significant shifts in hearing that made their

previously effective hearing aids inaffective. Shifts in hearing are common

in Mondini's, and CIs are often the only alternative after a major shift. I

can't see any distinct trend amongst them. One does very well, mainly

because he lost his hearing postlingually. The others are doing about as

well, maybe a bit better, then they were doing when they had enough hearing

to use their hearing aids.

Hope this helps,

Chris

<< Christofer deHahn.................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

May 20, 1999

My niece has a mondini malformation - has had the implant for 5 years and

is doing great! She has been mainstreamed since the first grade - her

language is fabulous - she is the kind of success we would all like to see

happen with the implant. She had her surgery done by Dr. Madox here in

Houston - he is now retired - but that was one of his specialties - you

might want to find a surgeon who has worked with the mondini malformation....

Amy

At 07:15 PM 5/19/99 -0400, you wrote: