Re: My daughter's CT scan results

[Guest guest]

That is exactly what (our 12 year old daughter) was diagnosed with.

We were told that she wasn’t a CI candidate because of the enlarged

aqueduct...too much of risk if it were to rupture (commonly referred to as a

gusher). It serves to keep balance for the body and if ruptured it can’t be

repaired. We’re looking into bone anchored hearing aides now because

is having more trouble with one of her ears and it seems that her hearing is

better through bone conduction...especially in that ear.

Jan

(Certainly not an expert)

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of ckobrien97

Sent: Wednesday, September 27, 2006 7:24 AM

To: Listen-Up

Subject: My daughter's CT scan results

Hi everyone! I wish that I had more time to be a more active member

of this group and not post only when I have a question. I have great

hope that someday my hands won't be so full and I will be able to

contribute more. I do read most posts and silently respond in my head

while I have 30 seconds to spare . I wanted to share that my 27

month old daughter had a CT scan last week and the results came in

yesterday. I am shocked that we have an answer for her hearing loss-

I was convinced that we would never know. Anyway, it turns out that

Lily has enlarged vestibular aqueducts and mild dysplasia of the

cochlea. I got the results over the phone and have not actually

spoken with Lily's doctor yet. I have done some quick searches and

the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have

not had time to fully research/comprehend what this means. Just

wondering if anyone here is an " expert " on this topic who might give

me a quick run-down of what this all means. We are currently in the

middle of the CI candidacy process for Lily and I worry now that her

cochlea will not be conducive to implantation should she qualify based

in her hearing loss. Thanks for any and all info you may have!

-Kriste (who is reading with great interest the thread about

homeschooling as that has been my plan for my girls since long before

I found out about my youngest daughter's hearing loss. glad to see i

am in good company. i recently discovered www.deafhomeschool.-com....)

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

[Guest guest]

Jan- Thanks for your reply. I wonder if it is a case-by case thing

then because I recently met a brother and sister here who have EVAS

and both have CIs. The sister was implanted at 18mo and her brother

was older- around 11. I appreciate knowing your story though so I

know to not be disappointed if we are told she is not a CI candidate.

I hope that the bone anchored hearing aides do the trick for your

daughter. I see now that I have even more to learn since I have never

heard of that....

-Kriste (who wrote the link wrong in her last post, should have been

www.deafhomeschool.com)

>

> That is exactly what (our 12 year old daughter) was diagnosed

with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred

to as a

> gusher). It serves to keep balance for the body and if ruptured it

can't be

> repaired. We're looking into bone anchored hearing aides now

because

> is having more trouble with one of her ears and it seems that her

hearing is

> better through bone conduction...especially in that ear.

>

>

>

> Jan

[Guest guest]

I bet it is a case by case thing (as are most things when dealing with

hearing impairment)... Hope it works well for you with a CI...

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of ckobrien97

Sent: Wednesday, September 27, 2006 8:20 AM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Jan- Thanks for your reply. I wonder if it is a case-by case thing

then because I recently met a brother and sister here who have EVAS

and both have CIs. The sister was implanted at 18mo and her brother

was older- around 11. I appreciate knowing your story though so I

know to not be disappointed if we are told she is not a CI candidate.

I hope that the bone anchored hearing aides do the trick for your

daughter. I see now that I have even more to learn since I have never

heard of that....

-Kriste (who wrote the link wrong in her last post, should have been

www.deafhomeschool.-com)

>

> That is exactly what (our 12 year old daughter) was diagnosed

with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred

to as a

> gusher). It serves to keep balance for the body and if ruptured it

can't be

> repaired. We're looking into bone anchored hearing aides now

because

> is having more trouble with one of her ears and it seems that her

hearing is

> better through bone conduction..-.especially in that ear.

>

>

>

> Jan

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

[Guest guest]

Hi Kriste,

I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs old and fit

with bilateral HA's. Currently he is Mod/Sev in the left and Sev/Prof in the

right. With his aids, he is functioning very well. We were lucky that he was

postlingually deafened and has excellent speech (with the exception that if a

" th " is at the end of the word, it has become an " f " ). We belong to a wonderful

yahoo group, " LVAS " , which is no end of excellent info with a moderator that has

got to have the most knowledge of LVAS we have ever talked to.

All the LVAS kids are different in how they react to this. Though no one has

ever talked about a " gusher " (that's the first I had ever heard of something

like that), we do know that our dr. has said that our son is an " excellent "

candidate for a CI if he ever looses everything and there have been many kids on

the LVAS list that HAVE had CI's. Please don't totally discount the CI route.

We also know that this can be a progressive loss and is can be exacerbated by

head trauma and pressure change. For our son, he has lost additional hearing

with a tremendous collision with another student head-on. Most came back. Some

kids however, loose more hearing on an amusement ride, blowing on a trumpet,

riding a car up a mountain or in an airplane. The general idea is to let kids be

kids (i.e. no helmets for most), but keep the contact sports to a minimum (no

football, soccer etc). Please come over to the LVAS list and find out all sorts

of info.

There are many theories about what causes LVAS. We don't really have a favorite

. We just know this is what we deal with and drive on. Some LVAS kids have

Mondini Malformation, some have Pendred's Syndrome. Which came first???? Our

son doesn't have any other symptoms and after being in the NIH study in '04,

they have listed him as ideopathic LVAS. LVAS can only be dx'd with a CT scan

(or MRI). There may be many more kids/adults with this syndrome but just don't

know it without the CT scan. But now that you know, more power to your family to

keep head bonks to a minimum!

Regards,

Ginger

Half Moon Bay, CA

My daughter's CT scan results

Hi everyone! I wish that I had more time to be a more active member

of this group and not post only when I have a question. I have great

hope that someday my hands won't be so full and I will be able to

contribute more. I do read most posts and silently respond in my head

while I have 30 seconds to spare . I wanted to share that my 27

month old daughter had a CT scan last week and the results came in

yesterday. I am shocked that we have an answer for her hearing loss-

I was convinced that we would never know. Anyway, it turns out that

Lily has enlarged vestibular aqueducts and mild dysplasia of the

cochlea. I got the results over the phone and have not actually

spoken with Lily's doctor yet. I have done some quick searches and

the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have

not had time to fully research/comprehend what this means. Just

wondering if anyone here is an " expert " on this topic who might give

me a quick run-down of what this all means. We are currently in the

middle of the CI candidacy process for Lily and I worry now that her

cochlea will not be conducive to implantation should she qualify based

in her hearing loss. Thanks for any and all info you may have!

-Kriste (who is reading with great interest the thread about

homeschooling as that has been my plan for my girls since long before

I found out about my youngest daughter's hearing loss. glad to see i

am in good company. i recently discovered www.deafhomeschool.com....)

[Guest guest]

Kriste,

My daughter was just diagnosed with the exact same thing almost two weeks ago.

She is four and has moderate to severe hearing loss in the higher frequencies so

the hearing loss does not seem to affect her TOO much yet, knock on wood.

Anyway, there is a yahoo group just for large vestibular aqueduct syndrome and

there are several parents with children who have written that their children do

have cochlear implants. Best wishes for you and your daughter. Keep us updated

on how things go.

Jocelyn

Jan and Bill s circlebarranch@...> wrote:

I bet it is a case by case thing (as are most things when dealing with

hearing impairment)... Hope it works well for you with a CI...

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of ckobrien97

Sent: Wednesday, September 27, 2006 8:20 AM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Jan- Thanks for your reply. I wonder if it is a case-by case thing

then because I recently met a brother and sister here who have EVAS

and both have CIs. The sister was implanted at 18mo and her brother

was older- around 11. I appreciate knowing your story though so I

know to not be disappointed if we are told she is not a CI candidate.

I hope that the bone anchored hearing aides do the trick for your

daughter. I see now that I have even more to learn since I have never

heard of that....

-Kriste (who wrote the link wrong in her last post, should have been

www.deafhomeschool.-com)

>

> That is exactly what (our 12 year old daughter) was diagnosed

with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred

to as a

> gusher). It serves to keep balance for the body and if ruptured it

can't be

> repaired. We're looking into bone anchored hearing aides now

because

> is having more trouble with one of her ears and it seems that her

hearing is

> better through bone conduction..-.especially in that ear.

>

>

>

> Jan

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

[Guest guest]

There is another Yahoo Group that is specific to LVAS -

http://health.groups.yahoo.com/group/LVAS/ - you might get additional

answers by posting there.

Good luck!

Sherry

My daughter's CT scan results

Hi everyone! I wish that I had more time to be a more active member of this

group and not post only when I have a question. I have great hope that

someday my hands won't be so full and I will be able to contribute more. I

do read most posts and silently respond in my head while I have 30 seconds

to spare . I wanted to share that my 27 month old daughter had a CT scan

last week and the results came in yesterday. I am shocked that we have an

answer for her hearing loss- I was convinced that we would never know.

Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild

dysplasia of the cochlea. I got the results over the phone and have not

actually spoken with Lily's doctor yet. I have done some quick searches and

the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not

had time to fully research/comprehend what this means. Just wondering if

anyone here is an " expert " on this topic who might give me a quick run-down

of what this all means. We are currently in the middle of the CI candidacy

process for Lily and I worry now that her cochlea will not be conducive to

implantation should she qualify based in her hearing loss. Thanks for any

and all info you may have!

-Kriste (who is reading with great interest the thread about homeschooling

as that has been my plan for my girls since long before I found out about my

youngest daughter's hearing loss. glad to see i am in good company. i

recently discovered www.deafhomeschool.com....)

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.

[Guest guest]

Ginger-

Can you please elaborate on the LVAS list? Sounds VERY interesting...we too

were told to watch the head bumps...

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of Ginger Cutter

Sent: Wednesday, September 27, 2006 9:06 AM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Hi Kriste,

I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs old and

fit with bilateral HA's. Currently he is Mod/Sev in the left and Sev/Prof in

the right. With his aids, he is functioning very well. We were lucky that he

was postlingually deafened and has excellent speech (with the exception that

if a " th " is at the end of the word, it has become an " f " ). We belong to a

wonderful yahoo group, " LVAS " , which is no end of excellent info with a

moderator that has got to have the most knowledge of LVAS we have ever

talked to.

All the LVAS kids are different in how they react to this. Though no one has

ever talked about a " gusher " (that's the first I had ever heard of something

like that), we do know that our dr. has said that our son is an " excellent "

candidate for a CI if he ever looses everything and there have been many

kids on the LVAS list that HAVE had CI's. Please don't totally discount the

CI route.

We also know that this can be a progressive loss and is can be exacerbated

by head trauma and pressure change. For our son, he has lost additional

hearing with a tremendous collision with another student head-on. Most came

back. Some kids however, loose more hearing on an amusement ride, blowing on

a trumpet, riding a car up a mountain or in an airplane. The general idea is

to let kids be kids (i.e. no helmets for most), but keep the contact sports

to a minimum (no football, soccer etc). Please come over to the LVAS list

and find out all sorts of info.

There are many theories about what causes LVAS. We don't really have a

favorite . We just know this is what we deal with and drive on. Some LVAS

kids have Mondini Malformation, some have Pendred's Syndrome. Which came

first???? Our son doesn't have any other symptoms and after being in the NIH

study in '04, they have listed him as ideopathic LVAS. LVAS can only be dx'd

with a CT scan (or MRI). There may be many more kids/adults with this

syndrome but just don't know it without the CT scan. But now that you know,

more power to your family to keep head bonks to a minimum!

Regards,

Ginger

Half Moon Bay, CA

My daughter's CT scan results

Hi everyone! I wish that I had more time to be a more active member

of this group and not post only when I have a question. I have great

hope that someday my hands won't be so full and I will be able to

contribute more. I do read most posts and silently respond in my head

while I have 30 seconds to spare . I wanted to share that my 27

month old daughter had a CT scan last week and the results came in

yesterday. I am shocked that we have an answer for her hearing loss-

I was convinced that we would never know. Anyway, it turns out that

Lily has enlarged vestibular aqueducts and mild dysplasia of the

cochlea. I got the results over the phone and have not actually

spoken with Lily's doctor yet. I have done some quick searches and

the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have

not had time to fully research/comprehend what this means. Just

wondering if anyone here is an " expert " on this topic who might give

me a quick run-down of what this all means. We are currently in the

middle of the CI candidacy process for Lily and I worry now that her

cochlea will not be conducive to implantation should she qualify based

in her hearing loss. Thanks for any and all info you may have!

-Kriste (who is reading with great interest the thread about

homeschooling as that has been my plan for my girls since long before

I found out about my youngest daughter's hearing loss. glad to see i

am in good company. i recently discovered www.deafhomeschool.-com....)

[Guest guest]

Sure - I believe you just go to groups.yahoo.com and search for LVAS. That

should find the new group. Join up and join us!

My daughter's CT scan results

Hi everyone! I wish that I had more time to be a more active member

of this group and not post only when I have a question. I have great

hope that someday my hands won't be so full and I will be able to

contribute more. I do read most posts and silently respond in my head

while I have 30 seconds to spare . I wanted to share that my 27

month old daughter had a CT scan last week and the results came in

yesterday. I am shocked that we have an answer for her hearing loss-

I was convinced that we would never know. Anyway, it turns out that

Lily has enlarged vestibular aqueducts and mild dysplasia of the

cochlea. I got the results over the phone and have not actually

spoken with Lily's doctor yet. I have done some quick searches and

the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have

not had time to fully research/comprehend what this means. Just

wondering if anyone here is an " expert " on this topic who might give

me a quick run-down of what this all means. We are currently in the

middle of the CI candidacy process for Lily and I worry now that her

cochlea will not be conducive to implantation should she qualify based

in her hearing loss. Thanks for any and all info you may have!

-Kriste (who is reading with great interest the thread about

homeschooling as that has been my plan for my girls since long before

I found out about my youngest daughter's hearing loss. glad to see i

am in good company. i recently discovered www.deafhomeschool.-com....)

[Guest guest]

Hi Ginger and Kriste,

I am also on the LVAS group. The moderator is Dr. Neil Bauman and

he has a website at www.hearinglosshelp.org

If you go there, you can search his archives and you will find his

article from 2002 that he wrote on LVAS. It is the most

comprehensive information available on LVAS. However, I think Neil

will be the first to admit, a lot of it is educated speculation. We

are all waiting for the results from the NIH study, and hope it will

shed some light.

Interesting that they classified your son's LVAS as idiopathic. I

would have thought all cases of LVAS were idiopathic, as I have

never read anything indicating a cause for the condition.

My son is also a candidate for CI if his loss ever warrants it. We

did have a discussion on " gushers " but not in regard to the CI. The

context was in regards to repairing his fixed stapes bone. This is

a common surgery and very successful, but they will not do it for

patients with LVAS because of the risk of the " gusher " which would

result in complete deafness.

Regards,

Tracey

>

> Hi Kriste,

>

> I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs

old and fit with bilateral HA's. Currently he is Mod/Sev in the left

and Sev/Prof in the right. With his aids, he is functioning very

well. We were lucky that he was postlingually deafened and has

excellent speech (with the exception that if a " th " is at the end of

the word, it has become an " f " ). We belong to a wonderful yahoo

group, " LVAS " , which is no end of excellent info with a moderator

that has got to have the most knowledge of LVAS we have ever talked

to.

>

> All the LVAS kids are different in how they react to this. Though

no one has ever talked about a " gusher " (that's the first I had ever

heard of something like that), we do know that our dr. has said that

our son is an " excellent " candidate for a CI if he ever looses

everything and there have been many kids on the LVAS list that HAVE

had CI's. Please don't totally discount the CI route.

>

> We also know that this can be a progressive loss and is can be

exacerbated by head trauma and pressure change. For our son, he has

lost additional hearing with a tremendous collision with another

student head-on. Most came back. Some kids however, loose more

hearing on an amusement ride, blowing on a trumpet, riding a car up

a mountain or in an airplane. The general idea is to let kids be

kids (i.e. no helmets for most), but keep the contact sports to a

minimum (no football, soccer etc). Please come over to the LVAS

list and find out all sorts of info.

>

> There are many theories about what causes LVAS. We don't really

have a favorite . We just know this is what we deal with and drive

on. Some LVAS kids have Mondini Malformation, some have Pendred's

Syndrome. Which came first???? Our son doesn't have any other

symptoms and after being in the NIH study in '04, they have listed

him as ideopathic LVAS. LVAS can only be dx'd with a CT scan (or

MRI). There may be many more kids/adults with this syndrome but just

don't know it without the CT scan. But now that you know, more power

to your family to keep head bonks to a minimum!

>

> Regards,

> Ginger

> Half Moon Bay, CA

> My daughter's CT scan results

>

>

> Hi everyone! I wish that I had more time to be a more active

member

> of this group and not post only when I have a question. I have

great

> hope that someday my hands won't be so full and I will be able to

> contribute more. I do read most posts and silently respond in my

head

> while I have 30 seconds to spare . I wanted to share that my 27

> month old daughter had a CT scan last week and the results came

in

> yesterday. I am shocked that we have an answer for her hearing

loss-

> I was convinced that we would never know. Anyway, it turns out

that

> Lily has enlarged vestibular aqueducts and mild dysplasia of the

> cochlea. I got the results over the phone and have not actually

> spoken with Lily's doctor yet. I have done some quick searches

and

> the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I

have

> not had time to fully research/comprehend what this means. Just

> wondering if anyone here is an " expert " on this topic who might

give

> me a quick run-down of what this all means. We are currently in

the

> middle of the CI candidacy process for Lily and I worry now that

her

> cochlea will not be conducive to implantation should she qualify

based

> in her hearing loss. Thanks for any and all info you may have!

>

> -Kriste (who is reading with great interest the thread about

> homeschooling as that has been my plan for my girls since long

before

> I found out about my youngest daughter's hearing loss. glad to

see i

> am in good company. i recently discovered

www.deafhomeschool.com....)

>

>

>

>

>

>

[Guest guest]

Jan,

Did you get a second opinion on the CI? Our surgeon said he had done hundreds of

these

and never had a gusher. And I don't think they cause irreparable harm. There are

also

several studies now that say CIs are safe for LVAS kids (you can find them on

pubmed).

Janet

Mom to Sofie, 7, bilateral LVAS, implanted 4/06

>

> That is exactly what (our 12 year old daughter) was diagnosed with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred to as a

> gusher). It serves to keep balance for the body and if ruptured it can't be

> repaired. We're looking into bone anchored hearing aides now because

> is having more trouble with one of her ears and it seems that her hearing is

> better through bone conduction...especially in that ear.

>

>

>

> Jan

>

[Guest guest]

Jan,

Did you get a second opinion on the CI? Our surgeon said he had done hundreds of

these

and never had a gusher. And I don't think they cause irreparable harm. There are

also

several studies now that say CIs are safe for LVAS kids (you can find them on

pubmed).

Janet

Mom to Sofie, 7, bilateral LVAS, implanted 4/06

>

> That is exactly what (our 12 year old daughter) was diagnosed with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred to as a

> gusher). It serves to keep balance for the body and if ruptured it can't be

> repaired. We're looking into bone anchored hearing aides now because

> is having more trouble with one of her ears and it seems that her hearing is

> better through bone conduction...especially in that ear.

>

>

>

> Jan

>

[Guest guest]

Jan,

Did you get a second opinion on the CI? Our surgeon said he had done hundreds of

these

and never had a gusher. And I don't think they cause irreparable harm. There are

also

several studies now that say CIs are safe for LVAS kids (you can find them on

pubmed).

Janet

Mom to Sofie, 7, bilateral LVAS, implanted 4/06

>

> That is exactly what (our 12 year old daughter) was diagnosed with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred to as a

> gusher). It serves to keep balance for the body and if ruptured it can't be

> repaired. We're looking into bone anchored hearing aides now because

> is having more trouble with one of her ears and it seems that her hearing is

> better through bone conduction...especially in that ear.

>

>

>

> Jan

>

[Guest guest]

Haven’t been to any ‘big’ doctors in a few years. We’re looking at going to

another doctor to look at the Bone anchored hearing aides and will ask

then...difficulty is our location in the rocky mtn region (south eastern

Montana)...not too many ‘differing’ opinions around here...To get to a

doctor that handles any type of surgery of this type is a 9-11 hour

drive...but heck, my kids drive over an hour to get to school each day...

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of janetlizard

Sent: Wednesday, September 27, 2006 3:51 PM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Jan,

Did you get a second opinion on the CI? Our surgeon said he had done

hundreds of these

and never had a gusher. And I don't think they cause irreparable harm. There

are also

several studies now that say CIs are safe for LVAS kids (you can find them

on pubmed).

Janet

Mom to Sofie, 7, bilateral LVAS, implanted 4/06

>

> That is exactly what (our 12 year old daughter) was diagnosed with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred to as

a

> gusher). It serves to keep balance for the body and if ruptured it can't

be

> repaired. We're looking into bone anchored hearing aides now because

> is having more trouble with one of her ears and it seems that her hearing

is

> better through bone conduction..-.especially in that ear.

>

>

>

> Jan

>

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

[Guest guest]

Haven’t been to any ‘big’ doctors in a few years. We’re looking at going to

another doctor to look at the Bone anchored hearing aides and will ask

then...difficulty is our location in the rocky mtn region (south eastern

Montana)...not too many ‘differing’ opinions around here...To get to a

doctor that handles any type of surgery of this type is a 9-11 hour

drive...but heck, my kids drive over an hour to get to school each day...

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of janetlizard

Sent: Wednesday, September 27, 2006 3:51 PM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Jan,

Did you get a second opinion on the CI? Our surgeon said he had done

hundreds of these

and never had a gusher. And I don't think they cause irreparable harm. There

are also

several studies now that say CIs are safe for LVAS kids (you can find them

on pubmed).

Janet

Mom to Sofie, 7, bilateral LVAS, implanted 4/06

>

> That is exactly what (our 12 year old daughter) was diagnosed with.

> We were told that she wasn't a CI candidate because of the enlarged

> aqueduct...too much of risk if it were to rupture (commonly referred to as

a

> gusher). It serves to keep balance for the body and if ruptured it can't

be

> repaired. We're looking into bone anchored hearing aides now because

> is having more trouble with one of her ears and it seems that her hearing

is

> better through bone conduction..-.especially in that ear.

>

>

>

> Jan

>

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006

[Guest guest]

Thank you so much everyone. I did find the LVAS group and joined but

haven't had chance to look around there yet.

Jocelyn- Do you think that your daughter's loss has been slowly

progressive and that is why it has not affected her speech and

language (meaning that she had enough hearing during crucial early

years)? Lily is so very behind and so hard to understand. I read

all day about minimizing head trauma, avoiding air travel, etc- I

cannot tell you how many times my maniac girl slipped and conked her

head on our hard tile floors when she was learning to walk. Maybe I

should have put that helmet on that I always threatened to put on her.

I am feeling irrationally responsible for the level of her hearing

loss because I didn't/couldn't prevent her from falling so much when

she was younger.

It is the weirdest thing to know why Lily has hearing loss. I really

and truly thought we would never know. And this strange sense of

guilt is just hanging over me today. So irrational, I know, but I

just can't help but think that some defective part of me (and my

husband) caused this. I know with time I will move past this stage

but that is where I am tonight...

[Guest guest]

Argh, that LVAS guilt! This is the one disorder where they actually say you may

be able to

prevent further hearing loss. This MAY be true for some kids with LVAS - those

who lost

hearing after running into a wall or something. For many others with this

disorder, the

hearing loss progresses in a stepwise fashion that has nothing to do with

inattentive

parenting. My daughter lost everything once while she was having a BM, for

goodness sake.

(The hearing returned soon after.) How do you prevent that? Like Lily, most of

Sofie's loss was

prelingual. I used sign and cued speech to give her what she needed until her

auditory skills

took off. Her language has grown tremendously (she is on grade level now), but

things didn't

really start progressing until age 5 or so. Just focus your energy on the work

that needs to be

done and stop beating yourself up!

Janet

[Guest guest]

Wow! That is remote. What is the nearest center? I was thinking today that the

info you

received might have been what was generally believed at the time you received

it. It's just

not accurate any longer. At what level is her hearing loss? A concern I would

have with

BAHA and LVAS is that the LVAS would progress again, and then you'd have to

switch to CI

anyway. Does she have a history of frequent progression? I'm butting in because

a lot of

doctors and audis don't really understand LVAS - they'll aid for current loss,

for example,

without taking into account the likelihood of progression. CI science has also

come very

far in the last few years. Just some things to think about.

Janet

>

> Haven't been to any `big' doctors in a few years. We're looking at going to

> another doctor to look at the Bone anchored hearing aides and will ask

> then...difficulty is our location in the rocky mtn region (south eastern

> Montana)...not too many `differing' opinions around here...To get to a

> doctor that handles any type of surgery of this type is a 9-11 hour

> drive...but heck, my kids drive over an hour to get to school each day...

>

> Jan

[Guest guest]

Yea, we’re pretty remote...have to travel 25 miles for a gallon of milk and

pay through the nose for that. Best thing is I can keep track of my kids

all the time :-).

We have traveled to Denver for the first ‘real’ evaluation (9 hours). There

is also another doctor in Missoula who does CI and BAHA, but we have

ventured that direction (again 9-10 hours).

She is moderate in one ear and moderate to profound in the other. Her

hearing does fluctuate though and we’re noticing one ear is probably

starting to drop off and tends to be staying there.

She is extremely active...rides horses (with a helmet) and will start

endurance riding next year (25-50 mile rides), plays basketball, etc.

Typical ranch kid (girl) with a snake in one pocket and mascara in the

other.

Like I said, we almost have to get out of our ‘little’ world here to get

different opinions on what is available...I’m going to get on the LVAS

group...sounds like more help that direction...

Thanks,

Jan

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of janetlizard

Sent: Thursday, September 28, 2006 10:11 AM

To: Listen-Up

Subject: Re: My daughter's CT scan results

Wow! That is remote. What is the nearest center? I was thinking today that

the info you

received might have been what was generally believed at the time you

received it. It's just

not accurate any longer. At what level is her hearing loss? A concern I

would have with

BAHA and LVAS is that the LVAS would progress again, and then you'd have to

switch to CI

anyway. Does she have a history of frequent progression? I'm butting in

because a lot of

doctors and audis don't really understand LVAS - they'll aid for current

loss, for example,

without taking into account the likelihood of progression. CI science has

also come very

far in the last few years. Just some things to think about.

Janet

>

> Haven't been to any `big' doctors in a few years. We're looking at going

to

> another doctor to look at the Bone anchored hearing aides and will ask

> then...difficulty is our location in the rocky mtn region (south eastern

> Montana)...not too many `differing' opinions around here...To get to a

> doctor that handles any type of surgery of this type is a 9-11 hour

> drive...but heck, my kids drive over an hour to get to school each day...

>

> Jan

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006

[Guest guest]

" I totally know what you mean. I still feel the same way. When the

doctor called me two weeks ago with my daughter's CT scan results I

just hung up the phone and cried. I felt like it was my fault, and I

still do, even though i know I would never do anything to hurt her. "

Jocelyn- So you do know exactly how I feel! I stuffed my tears after

I heard the news as my girls were nearby but I felt like I was going

to crumple to the floor. I haven't really had a chance to cry about

this yet. Wish it were as easy to schedule time for tears as it is

for other things in life . Kind of wish I had gone ahead and let it

out when they first welled up in my eyes. I am very curious about the

dizziness and vertigo and when you discovered it. I will have to ask

more about it on the LVAS group...

Janet- Thank you for your words. I know logically that there is no

fault here but somehow it still hurts. I also appreciate hearing how

you dealt with the early days when communication was challenging. I

am encouraged to hear that your daughter is doing so well now. If we

can just get through the next couple of years, I know that I will look

back on this time as the hardest time...

>

> Argh, that LVAS guilt! This is the one disorder where they actually

say you may be able to

> prevent further hearing loss. This MAY be true for some kids with

LVAS - those who lost

> hearing after running into a wall or something. For many others with

this disorder, the

> hearing loss progresses in a stepwise fashion that has nothing to do

with inattentive

> parenting. My daughter lost everything once while she was having a

BM, for goodness sake.

> (The hearing returned soon after.) How do you prevent that? Like

Lily, most of Sofie's loss was

> prelingual. I used sign and cued speech to give her what she needed

until her auditory skills

> took off. Her language has grown tremendously (she is on grade level

now), but things didn't

> really start progressing until age 5 or so. Just focus your energy

on the work that needs to be

> done and stop beating yourself up!

> Janet

>