Re: Mondini Syndrome and Enlarged Vestibular Aqueducts

June 5, 2004

Hi,

My daughter Ellie who is 3yrs old has Mondini Syndrome but she does not have

EVA. I don't know if I can answer any questions for you but I thought I

would just let you know a little about Ellie. When she was born and found

out she had a hearing loss we thought it was in the severe range. She used

hearing aids until 18months and we decided to get her implanted. When she

was implanted they were only able to insert 7 out of 16 electrodes, because

of the Mondini's. We were really disappointed at first. But she has done

great. She is atleast 5 months behind normal hearing children but she is

always amazing us. If you have any questions for me just drop me an email.

Take Care,

mom to Ellie CII 3yrs

Reply-To: Listen-Up

To: Listen-Up

Subject: Mondini Syndrome and Enlarged Vestibular Aqueducts

Date: Thu, 03 Jun 2004 20:29:11 -0000

_________________________________________________________________

Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage!

http://join.msn.click-url.com/go/onm00200362ave/direct/01/

June 5, 2004

Hi ,

Thank you for replying. Was your daughters loss progressive or did it always

stay in the severe range? My daughter is moderate to severe but, I am getting

conflicting info. Some audi's tell me it will most likely remain stable and

others tell me that it is most likely to decline. So far she has remained

stable. I am glad to hear your daughter is doing well!

Mondini Syndrome and Enlarged Vestibular Aqueducts

Date: Thu, 03 Jun 2004 20:29:11 -0000

_________________________________________________________________

Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage!

http://join.msn.click-url.com/go/onm00200362ave/direct/01/

June 6, 2004

I am not sure I can really answer you as to whether Ellie's loss has been

stable or progressive. When we first found out about her hearing loss we

thought it was in the severe range and when she was older and would

cooperate with testing she tested in the profound range. I don't think it

was a progressive loss, I just think that it was worse than we first

thought. Now that she has an implant we do not ever test her without her

implant on so I do not know if her residual hearing in her unimplanted ear

has gotten worse or not. One thing I know with Mondini's is that the

cochlea is more than likely going to get ossification (bone growth) in it

which would worsen the hearing loss. Maybe I am wrong on that but when the

did implant Ellie they were surprised by all the ossification in her

cochlea.

Does your daughter wear hearing aids now? How does she do with them if she

is wearing them?

Ellie wore hearing aids until about 18 months and did really well with them

but they just were not enough for her. I am also constantly amazed at her

lip reading skills when she doesn't have her implant on.

Hope I helped.

Seeler

Ellie's mom 3yrs CII

Reply-To: Listen-Up

To: <Listen-Up >

Subject: Re: Mondini Syndrome and Enlarged Vestibular Aqueducts

Date: Sat, 5 Jun 2004 18:21:11 -0400

_________________________________________________________________

Getting married? Find great tips, tools and the latest trends at MSN Life

Events. http://lifeevents.msn.com/category.aspx?cid=married

June 6, 2004