Enlarged Vestibular Aqueduct Syndrome

December 20, 2000

Hello everyone,

My son finally had his CT scan today and it has confirmed that he does have

EVAS (the doctor calls it this although I think I have seen others refer to

it as LVA). Although I have learned a little about this syndrome from this

group (thank you), I would like to do some more research and am not sure

where to begin. I know that many of you have children with this etiology

for their hearing loss and I was hoping for some guidance. Can anyone steer

me to some good sources of information? I'd like to find out what we can

expect and what precautions we should take (aside from the standard " no

contact sports " edict).

' hearing loss was only diagnosed in August and was mild to moderately

severe bilaterally at that time. Now, only four months later, his left ear

is moderate (at 250) to profound (above 6000) and his right ear is mild to

severe. Since my husband and I are so new to all of this, I would

appreciate any info anyone can offer--either sources for further research or

even your own childrens' stories.

Thank you for the wonderful source of information you have all already been

for me!

Carol

near Seattle--mom to , 4.5, mild to profound and Kate, 6.0, hearing

Re: motor development in deaf kids

> Thank you to everyone who has replied. I am finding that the possibility

of

> a link between deafness and motor delays is interesting and worth

pursueing.

> Most of the professionals we are working with seem to think there may be a

> link but they are not sure and it is WAY more useful to get thoughts on

this

> subject from you guys - who have been there.

>

> Thanks again-

> Laurie - WA

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

December 20, 2000

Dear Carol,

Hi, I am so glad to see your posts on this listen up board.

I remember reading your one of your first posts a few months ago.

You stuck out in my mind because of your sons name, Benenke.

I am sure that your remember that I told you the doctor who gave andrea her

Cochlear Implant is named Beneke.

I am sorry to read about the progressive nature of 's hearing loss. I am

also sorry I can not offer any help with any information at this point. I hope

that

someone can send you in the right direction.

For now, all I can do is let you know that I am still thinking of you and your

family over this holiday season.

D. Venable

Father of andrea

http://home.stlnet.com/~poohbear/photo8.html

CBenecke wrote:

> Hello everyone,

>

> My son finally had his CT scan today and it has confirmed that he does have

> EVAS (the doctor calls it this although I think I have seen others refer to

> it as LVA). Although I have learned a little about this syndrome from this

> group (thank you), I would like to do some more research and am not sure

> where to begin. I know that many of you have children with this etiology

> for their hearing loss and I was hoping for some guidance. Can anyone steer

> me to some good sources of information? I'd like to find out what we can

> expect and what precautions we should take (aside from the standard " no

> contact sports " edict).

>

> ' hearing loss was only diagnosed in August and was mild to moderately

> severe bilaterally at that time. Now, only four months later, his left ear

> is moderate (at 250) to profound (above 6000) and his right ear is mild to

> severe. Since my husband and I are so new to all of this, I would

> appreciate any info anyone can offer--either sources for further research or

> even your own childrens' stories.

>

> Thank you for the wonderful source of information you have all already been

> for me!

>

> Carol

> near Seattle--mom to , 4.5, mild to profound and Kate, 6.0, hearing

December 20, 2000

> EVAS (the doctor calls it this although I think I have seen others refer

to

> it as LVA).

6 of one, a half dozen of the other: Enlarged Vestibular Aquaduct Syndrome &

Large Vestibular Aquaducts.

> Can anyone steer

> me to some good sources of information?

Where else but

http://www.listen-up.org/med2.htm

If anyone has any sites other than the ones listed there, please let me know

and I'll add them.

Hugs,

Kay

December 21, 2000

I'm also waiting to find out the results of CT scan done last week...just

put another call into the doctor to see if someone over at the hospital will

let me know! I'm not sure why it has taken 10 days and still no results....?

Kay, as always, thank you for the wonderful resources on your site. You

really are a beacon to those of us stumbling through new territory.

Merry Christmas to all!

- Pam

> > EVAS (the doctor calls it this although I think I have seen others refer

> to

> > it as LVA).

>

> 6 of one, a half dozen of the other: Enlarged Vestibular Aquaduct Syndrome

&

> Large Vestibular Aquaducts.

>

> > Can anyone steer

> > me to some good sources of information?

>

> Where else but

> http://www.listen-up.org/med2.htm

> If anyone has any sites other than the ones listed there, please let me

know

> and I'll add them.

>

December 21, 2000

Carol-

I have two daughters (Delaney and ). Delaney was diagnosed with LVA/EVA

last January (and officially diagnosed with hearing impairment a year ago

November. Her hearing loss has progressed (Moderately severe to profound).

We just found out three days ago that our youngest daughter, (9 months)

also has LVA, bilaterally. She currently is only experiencing hearing loss in

one ear, although the ears keep fluctuating (one ABR it will be the right ear

with the loss, the next time it will be the left ear with the loss). We're not

really sure where her hearing loss will net out.

Anyway- I'll write more later with some good references!

Best of luck-

>>> poohbear@... 12/20/00 09:24PM >>>