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In a message dated 12/29/2004 7:49:01 P.M. Central Standard Time,

Listen-Up writes:

Hi - that's exciting news! What kind of hearing aids do you wear? My

Tom

- who is 12-1/2 now - got Phonak Superos this summer and adores them. He

heard

water in the drinking fountain for the first time!

I have the Oticon Adapto and while I like the sound, I absolutely detest

that it does not have an on/off switch.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

" The moment at hand is the only thing we really own "

Denver

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In a message dated 12/29/2004 7:49:01 P.M. Central Standard Time,

Listen-Up writes:

Hi - that's exciting news! What kind of hearing aids do you wear? My

Tom

- who is 12-1/2 now - got Phonak Superos this summer and adores them. He

heard

water in the drinking fountain for the first time!

I have the Oticon Adapto and while I like the sound, I absolutely detest

that it does not have an on/off switch.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

" The moment at hand is the only thing we really own "

Denver

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asked:

>Subject: Re: MRI/CT info needed

>

>Would only half of the cochlea being formed be the cause of a hearing loss? Is

this something that they would have known without the MRI/CT? The audiologist

said that Jakob's loss was genetic. I guess that I'm just afraid that we are

going to have these tests done only to have them tell us that Jakob won't be

able to get the implant.

>

Hi . Yes, a malformed cochlea can be a cause of hearing loss...my

son has a pair of 'em. It's generally called a 'Mondini Dysplasia'. In

our case, our doctors believe that the growth of Teddy's cochlea was

interrupted when I was about seven weeks pregnant, because I got a

terrible flu-like illness, high fever, and the like. He has what's

called an 'incomplete partition' in the apical (or top, farthest in)

turns of his cochleas. Even though he has this problem, his ENT said

that he would still be a candidate for a cochlear implant if the need

arose. It's harder to do with Mondini kids, but it has been done

successfully. Of course if there's very little or no cochlea, they can't

do an implant, but that's pretty rare.

Jill said:

>::::::::::::::::::::::::Loud raucous applause::::::::::::::::::::::::

>:::::::::::::::::::::::::Dancing in the streets:::::::::::::::::::::::::

>::::::::::::::::::::::::::::::More appaluse::::::::::::::::::::::::::::::

>

>That is wonderful ... makes me want to contact our State Senators (once all

>my out-of-town family is gone)

>

>How did you get you initial meeting? Do you have a background dealing with

>the law? ... oh, I'm going to have many questions for you!

>

>

Hi Jill. Getting the initial meeting was a friend-of-a-friend deal, but

that shouldn't stop you. You can get in touch with your legislators at

any time, and request a meeting. Best idea is to call whomever was

elected to represent your town (or county, or part of town, or

whatever)...tell them what your thought is, and tell them that you have

sample bills/laws from other states, and would s/he take a look at them?

You also might want to target anyone in your state legislature who deals

with children's health care.

Basically, I'm just a pissed-off loud-mouthed mom who knew that

something was wrong with the way the system was running. That, and I did

a LOT of research, and wrote a pretty convincing point paper. Feel free

to use any of the info I posted if you are going to go on a crusade of

your own. :-)

wrote:

>Once we finally got him to sleep, it took almost a

>half hour as he was over tired, it took an hour to do

>just ONE ear, the left side. Even that was not 100%

>done (though close to it) when he woke up with a

>vengence and never went back to sleep :(

>

>

Yup, this is exactly what happened to us. I would never do an unsedated

ABR again. Mainly because I know of so many stories just like this, and

so many kids who've been sedated and not one has had a long-term problem

with the sedation (not to say it's not possible...just not common).

>After the test she did that first

>initial test (to see if there is blockage) and sure

>enough both ears were both blocked again.. and he has

>been on cefzil for almost 10 days now.

>

You mean a tympanogram? That's when they blow a small puff of air into

the ear canal, and a machine draws a little graph to measure how well

the eardrum is responding. You want it to look like a mountain, but

sometimes it's just 'flat'...that usually means fluid. And as for the

Cefzil, remember, that just clears up the INFECTION, not the fluid.

> She sayd it

>could take 8 wks to get rid of the fluid, I see the

>ENT again Feb. 2nd and if the ears are clear she said

>to call back and then she will do the original testing

>again (not the abr but the oae or whatever) and go

>from there. She did not give me as many answers as

>I'd thought she would.

>

>

There is really no reason for another OAE. What you need is a diagnostic

ABR when Ricky's ears are clear of fluid.

>He

>said last week (dec. 21) that he does not think the

>fluid woudl cause the hearing loss, and said tubes

>were not necessary at least not yet. I don't know

>what to make of it... what do you all think???

>

>

Fluid generally causes anywhere from a 20-40 db hearing loss. A

conductive hearing loss (one that's caused by a problem with the

structure of the ear, or the bones of the middle ear, or fluid -- as

opposed to a sensorineural hearing loss, which is in the inner ear)

cannot really cause more than a 60 db hearing loss. Just a point of

reference that you might find helpful.

My son actually has a mixed loss in one ear...mostly a sensorineural

loss, but part of one of his middle-ear bones is shaped wrong, too, so

that adds to his hearing loss.

>One thing I wanted to ask was, the audiologist says he

>heard the higher tones and it was the low tones he had

>a hard time with.

>

>That is normal right?

>

The hearing loss caused by fluid in the ear usually looks just like

that...more of a loss in the low tones than in the high ones. Most

people with permanent sensorineural losses will have the

opposite...better low-tone hearing, and worse in the highs. That's not a

rule, just what's most common.As said, any configuration is

possible, but most people with a hearing loss from fluid will hear high

tones better than lows.

Hope this helps.

--kerri

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