Re: Marie - hearing aids-(apologies if you receive this twice)

[Guest guest]

G,day Grainne

I read your message about your son having a hearing aid and other children

having the amplifying system at school. Nick had all of his inner ear

removed and only has limited hearing in his good ear. However, the

specialists said that as Nick has no amplification left a hearing aid will

not work for him. Either Tom or Phil did answer this once, but why does

Midget need amplification for the hearing aid to work.

I get so frustrated watching him struggle and we have to totally avoid any

place where there is background noise as not only does he lose concentration

but he ends up with a headache and informs us it is way to busy (his good

ear is busy).

Please somebody explain it to me in layman terms: why can't a hearing aid

work for my Nick?

Thanks Deb

Re: Re: emotional state of the child - marie

> >

> >oops...I don't know what happened but my email got sent without me

> >intending

> >to send it and it wasn't finished!

> >

> >I was just commenting that Curtis reconstruction was at least 14

> >months away

> >IF the next surgery was successful in getting rid of the ctoma. But

> >I had been

> >thinking that the hearing aid would be useless once the

> >reconstruction was

> >done and, since they are expensive, I was waiting. However, I'm

> >excited to hear

> >that the Hearing Aid could be reprogrammed and still be quite

> useful

> >AFTER a

> >reconstruction.

> >

> >Do you know does a digital hearing aid help in a case where the

> >person has no

> >conductive hearing? Curtis currently has no hearing bones. Can you

> >tell me

> >about the cost range for a good (as trouble-free and as

> >inconspicuous as

> >possible since it is for a child) digital hearing aid?

> >

> >What about issues of being teased? What have parents' experiences

> >been? Will

> >most kids wear them with no problems? Or, as in the case of

> ie,

> >do a lot

> >of kids end up refusing to wear them due to the problems of being

> >different?

> >Or do they fall out and get lost? (I am thinking now of all the

> >problems

> >experienced by parents whose kids need glasses and which are

> >constantly getting lost

> >and having to be, expensively, replaced? Are hearing aids like

> this?

> >Do kids,

> >age 7, learn how to adjust the sound level appropriately?

> >

> >Thank you again. I am learning so much that I hope will help my

> son.

> >Thank

> >you, thank you!

> >

> >Marie

>

>

>

>

>

>

>

[Guest guest]

I just wanted to be clear of one thing. Did Midget really had all of his inner

ear removed? You are sure that it was inner ear and not middle ear?

G,day Grainne

I read your message about your son having a hearing aid and other children

having the amplifying system at school. Nick had all of his inner ear

removed and only has limited hearing in his good ear. However, the

specialists said that as Nick has no amplification left a hearing aid will

not work for him. Either Tom or Phil did answer this once, but why does

Midget need amplification for the hearing aid to work.

I get so frustrated watching him struggle and we have to totally avoid any

place where there is background noise as not only does he lose concentration

but he ends up with a headache and informs us it is way to busy (his good

ear is busy).

Please somebody explain it to me in layman terms: why can't a hearing aid

work for my Nick?

Thanks Deb

Re: Re: emotional state of the child - marie

> >

> >oops...I don't know what happened but my email got sent without me

> >intending

> >to send it and it wasn't finished!

> >

> >I was just commenting that Curtis reconstruction was at least 14

> >months away

> >IF the next surgery was successful in getting rid of the ctoma. But

> >I had been

> >thinking that the hearing aid would be useless once the

> >reconstruction was

> >done and, since they are expensive, I was waiting. However, I'm

> >excited to hear

> >that the Hearing Aid could be reprogrammed and still be quite

> useful

> >AFTER a

> >reconstruction.

> >

> >Do you know does a digital hearing aid help in a case where the

> >person has no

> >conductive hearing? Curtis currently has no hearing bones. Can you

> >tell me

> >about the cost range for a good (as trouble-free and as

> >inconspicuous as

> >possible since it is for a child) digital hearing aid?

> >

> >What about issues of being teased? What have parents' experiences

> >been? Will

> >most kids wear them with no problems? Or, as in the case of

> ie,

> >do a lot

> >of kids end up refusing to wear them due to the problems of being

> >different?

> >Or do they fall out and get lost? (I am thinking now of all the

> >problems

> >experienced by parents whose kids need glasses and which are

> >constantly getting lost

> >and having to be, expensively, replaced? Are hearing aids like

> this?

> >Do kids,

> >age 7, learn how to adjust the sound level appropriately?

> >

> >Thank you again. I am learning so much that I hope will help my

> son.

> >Thank

> >you, thank you!

> >

> >Marie

>

>

>

>

>

>

>

[Guest guest]

G,day

The doc said Midget had all of his inner ear removed as the c-toma was

actually attached to a nerve on his brain. I get lost in all of the docs

lingo, but I am sure that is what he said (is there a difference)?

Thanks Deb

Re: Marie - hearing aids-(apologies if you receive

this twice)

> I just wanted to be clear of one thing. Did Midget really had all of his

inner ear removed? You are sure that it was inner ear and not middle ear?

>

>

>

>

>

[Guest guest]

I'd be a little sceptical about hearing that everything in the "inner ear" was removed. More likely it was the middle ear... the nerve is the facial nerve which is the 7th cranial nerve. If a nerve in the inner ear was involved, it would be the vestibulo-cochlear nerve, which is the 8th cranial nerve. These two nerves run through the ear... However, I think that if the inner ear is involved, it would more likely be an "accoustic neuroma". When a c-toma is breaching the inner ear, it is usually because it has grown on the balance canals, and created a fistula there... this gives a conduit to the inner ear.

Lynn

-- Re: Marie - hearing aids-(apologies if you receive this twice)

G,day

The doc said Midget had all of his inner ear removed as the c-toma was

actually attached to a nerve on his brain. I get lost in all of the docs

lingo, but I am sure that is what he said (is there a difference)?

Thanks Deb

Re: Marie - hearing aids-(apologies if you receive

this twice)

> I just wanted to be clear of one thing. Did Midget really had all of his

inner ear removed? You are sure that it was inner ear and not middle ear?

>

>

>

>

>

[Guest guest]

G,day Lynn

I would say then that it was the middle ear that Midget had removed. The 7th and 8th nerve was damaged. I know that his eardrum is made of plastic.

Thanks Deb

Re: Marie - hearing aids-(apologies if you receive

this twice)

> I just wanted to be clear of one thing. Did Midget really had all of his

inner ear removed? You are sure that it was inner ear and not middle ear?

>

>

>

>

>

[Guest guest]

Dear Grainne,

Thank you very much for such a helpful message. I'm sorry it's taken me so long to get back to you but I didn't have access to my computer for a few days. Everything you have told me is very encouraging.

I did find out that our insurance covers 80% of a hearing aid if the doctor will prescribe one as medically necesarry. I don't see why he wouldn't....has anybody had trouble with this?

Also, I am curious to know if your son was resistant at first. I brought up the subject of a hearing aid with Curtis and he was very against the idea. He cried, said they looked strange, and everybody would tease him. I have a few ideas on how to work with him on this, but am wondering if others got this reaction from their child and how they handled it?

Thanks,

Marie

[Guest guest]

I'm just guessing but if he had all of his inner ear removed, wouldn't that include the auditory nerve? Without the nerve, the sound frequencies cannot be sent to the brain whether they are amplified or not. Am I right, here?

Marie

[Guest guest]

In a message dated 4/20/2004 10:49:21 AM Pacific Standard Time, we4counts@... writes:

I'm just guessing but if he had all of his inner ear removed, wouldn't that include the auditory nerve? Without the nerve, the sound frequencies cannot be sent to the brain whether they are amplified or not. Am I right, here?

oops, I can see I am WAAAY too late on this one. Sorry, just ignore.

Marie

[Guest guest]

G,day Marie

The truth is I am not sure what they did on the day of diagnosis. Midget went in to have gromits in both ears. We were away from home and about half hour after he went in the doc, a sister of mercy and a priest came into the parents retreat with all these forms and said "sign these we have found a tumour wrapt around Nick's brain, if we don't precede immediately he has four weeks" Well I just kept repeating "not my kid he is getting gromits" Luckily my husband was there to keep things rolling.

Half way through the surgery they bought Midget out and I said "see they had the wrong kid" then the doc advised me that they were doing an MRI to see exactly where and how far.

Basically all I remember is phoning my parents, they and my Grandmother flew up along with close mates, when they got there I told them to leave the hospital as they had the wrong kid. Now I wish I had've listened to what was said.

I think I started to believe it when Midget was transfered to the city hospital.

All I know now are the nerves that were affected, have been told a hearing aid will not work as he has no amplification and he has a plastic inner ear, maybe it was middle, but inner does stick in my mind and my husbands.

I guess it is a question to ask when we return to Brisbane in November. Hubby says he heard the words, signed the forms but did not actually listen.

It was not until all of the panic had settled down that the doc by this time it was a neuorologist, told us it was a c-toma.

Deb.

Re: Marie - hearing aids-(apologies if you receive this twice)

I'm just guessing but if he had all of his inner ear removed, wouldn't that include the auditory nerve? Without the nerve, the sound frequencies cannot be sent to the brain whether they are amplified or not. Am I right, here?Marie

[Guest guest]

G,day Marie

No not too late, anything will help. That does explain why Midget can't have a hearing aid. I must admit sometimes I envy those who say they have a hearing aid. I can imagine the tele being not so loud, Midget actually talking and not yelling.

Sometimes I am a bad mum and I might be doing something looking away from him and talking (he lip reads) he shrugs his shoulders and says "when you are ready to look at me then I will answer" he says it with a smile as if to say "you have a lot to learn"

He turns 10 today and I do worry about what jobs he will not qualify for.

Deb

Re: Marie - hearing aids-(apologies if you receive this twice)

In a message dated 4/20/2004 10:49:21 AM Pacific Standard Time, we4counts@... writes:

I'm just guessing but if he had all of his inner ear removed, wouldn't that include the auditory nerve? Without the nerve, the sound frequencies cannot be sent to the brain whether they are amplified or not. Am I right, here?oops, I can see I am WAAAY too late on this one. Sorry, just ignore.Marie