Re: Facial Nerve Palsy--Rita

[Guest guest]

I think the doctors blow off the facial nerve palsy because there isn't really

anything that can be done for it (except for that facial reanimation procedure I

mentioned, but that's pretty new and I don't think very many have been done).

Also, having the palsy isn't a life or death issue. It's cosmetically

unappealing, and there can be some eye dryness, but in the larger scheme of

things...

I agree with you on prevantative lubrication--It's not going to hurt things.

Visine tears are OK--just don't use anything that " gets the red out. " Refresh,

Systane, and TheraTears are all good brands. As long as you are using them less

than 4 times per day, the bottle kind of tears are fine. If you are using them

more frequently, you really should be using the preservative-free ones (they

come in little plastic tubes), so you aren't dumping too many preservatives onto

the eye surface. We use Celluvisc for Evan--it's a thicker, preservative-free

tear. Because it's thicker, it lasts a little longer.

One way to tell if the eyes are in need of the tears, is to look and see if

you see any mucus on the eye surface. It is clear, and will make little strands

across the eye surface from the lids. If you see any of that, you need tears!

(mom to Evan 8.5 mos and an optometrist)

Rita Crowley wrote:

Been a bit busy. but thanks for the useful information about facial palsy

Sara

thanks for sharing information about your son Evan's facial palsy.

My daughter closes her right eye (the side with the palsy), while she

sleeps. Last time we had been to eye doctor in feb, she did not suggest any

drops for her(as she did not notice her eyes to be dry). But i recently got some

visine tears (did not start putting them) and talked to the doctor. My main

concern is - before it gets dry, why not prevent it.

---------------------------------

New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

[Guest guest]

Hi , Ellen, , brandi and others,

A little update on my daughter, with coloboma, also facial nerve palsy(

acquired)

we got the CT results. did not talk to the doctor yet.

A few questions on facial palsy. CT scan report says - near complete

opacification of the mastoid air cells. Also middle ear opacification

7th cranial nerves appear slightly small, more pronounced on the right than

the left (right side is the palsy)

Anybody know what this is. Doctor's nurse said, doctor will have aconference

with the radialogist and give us a call.

Please let me know if you know anything what this mean. Is it serious. She

recently had fluid which was taken out before the CT.

Thanks

Rita

>

> I think the doctors blow off the facial nerve palsy because there isn't

> really anything that can be done for it (except for that facial reanimation

> procedure I mentioned, but that's pretty new and I don't think very many

> have been done). Also, having the palsy isn't a life or death issue. It's

> cosmetically unappealing, and there can be some eye dryness, but in the

> larger scheme of things...

>

> I agree with you on prevantative lubrication--It's not going to hurt

> things. Visine tears are OK--just don't use anything that " gets the red

> out. " Refresh, Systane, and TheraTears are all good brands. As long as you

> are using them less than 4 times per day, the bottle kind of tears are

> fine. If you are using them more frequently, you really should be using the

> preservative-free ones (they come in little plastic tubes), so you aren't

> dumping too many preservatives onto the eye surface. We use Celluvisc for

> Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> lasts a little longer.

>

> One way to tell if the eyes are in need of the tears, is to look and see

> if you see any mucus on the eye surface. It is clear, and will make little

> strands across the eye surface from the lids. If you see any of that, you

> need tears!

>

> (mom to Evan 8.5 mos and an optometrist)

>

> Rita Crowley wrote:

> Been a bit busy. but thanks for the useful information about facial palsy

>

> Sara

> thanks for sharing information about your son Evan's facial palsy.

> My daughter closes her right eye (the side with the palsy), while

> she sleeps. Last time we had been to eye doctor in feb, she did not suggest

> any drops for her(as she did not notice her eyes to be dry). But i recently

> got some visine tears (did not start putting them) and talked to the doctor.

> My main concern is - before it gets dry, why not prevent it.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

Hi , Ellen, , brandi and others,

A little update on my daughter, with coloboma, also facial nerve palsy(

acquired)

we got the CT results. did not talk to the doctor yet.

A few questions on facial palsy. CT scan report says - near complete

opacification of the mastoid air cells. Also middle ear opacification

7th cranial nerves appear slightly small, more pronounced on the right than

the left (right side is the palsy)

Anybody know what this is. Doctor's nurse said, doctor will have aconference

with the radialogist and give us a call.

Please let me know if you know anything what this mean. Is it serious. She

recently had fluid which was taken out before the CT.

Thanks

Rita

>

> I think the doctors blow off the facial nerve palsy because there isn't

> really anything that can be done for it (except for that facial reanimation

> procedure I mentioned, but that's pretty new and I don't think very many

> have been done). Also, having the palsy isn't a life or death issue. It's

> cosmetically unappealing, and there can be some eye dryness, but in the

> larger scheme of things...

>

> I agree with you on prevantative lubrication--It's not going to hurt

> things. Visine tears are OK--just don't use anything that " gets the red

> out. " Refresh, Systane, and TheraTears are all good brands. As long as you

> are using them less than 4 times per day, the bottle kind of tears are

> fine. If you are using them more frequently, you really should be using the

> preservative-free ones (they come in little plastic tubes), so you aren't

> dumping too many preservatives onto the eye surface. We use Celluvisc for

> Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> lasts a little longer.

>

> One way to tell if the eyes are in need of the tears, is to look and see

> if you see any mucus on the eye surface. It is clear, and will make little

> strands across the eye surface from the lids. If you see any of that, you

> need tears!

>

> (mom to Evan 8.5 mos and an optometrist)

>

> Rita Crowley wrote:

> Been a bit busy. but thanks for the useful information about facial palsy

>

> Sara

> thanks for sharing information about your son Evan's facial palsy.

> My daughter closes her right eye (the side with the palsy), while

> she sleeps. Last time we had been to eye doctor in feb, she did not suggest

> any drops for her(as she did not notice her eyes to be dry). But i recently

> got some visine tears (did not start putting them) and talked to the doctor.

> My main concern is - before it gets dry, why not prevent it.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

Hi , Ellen, , brandi and others,

A little update on my daughter, with coloboma, also facial nerve palsy(

acquired)

we got the CT results. did not talk to the doctor yet.

A few questions on facial palsy. CT scan report says - near complete

opacification of the mastoid air cells. Also middle ear opacification

7th cranial nerves appear slightly small, more pronounced on the right than

the left (right side is the palsy)

Anybody know what this is. Doctor's nurse said, doctor will have aconference

with the radialogist and give us a call.

Please let me know if you know anything what this mean. Is it serious. She

recently had fluid which was taken out before the CT.

Thanks

Rita

>

> I think the doctors blow off the facial nerve palsy because there isn't

> really anything that can be done for it (except for that facial reanimation

> procedure I mentioned, but that's pretty new and I don't think very many

> have been done). Also, having the palsy isn't a life or death issue. It's

> cosmetically unappealing, and there can be some eye dryness, but in the

> larger scheme of things...

>

> I agree with you on prevantative lubrication--It's not going to hurt

> things. Visine tears are OK--just don't use anything that " gets the red

> out. " Refresh, Systane, and TheraTears are all good brands. As long as you

> are using them less than 4 times per day, the bottle kind of tears are

> fine. If you are using them more frequently, you really should be using the

> preservative-free ones (they come in little plastic tubes), so you aren't

> dumping too many preservatives onto the eye surface. We use Celluvisc for

> Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> lasts a little longer.

>

> One way to tell if the eyes are in need of the tears, is to look and see

> if you see any mucus on the eye surface. It is clear, and will make little

> strands across the eye surface from the lids. If you see any of that, you

> need tears!

>

> (mom to Evan 8.5 mos and an optometrist)

>

> Rita Crowley wrote:

> Been a bit busy. but thanks for the useful information about facial palsy

>

> Sara

> thanks for sharing information about your son Evan's facial palsy.

> My daughter closes her right eye (the side with the palsy), while

> she sleeps. Last time we had been to eye doctor in feb, she did not suggest

> any drops for her(as she did not notice her eyes to be dry). But i recently

> got some visine tears (did not start putting them) and talked to the doctor.

> My main concern is - before it gets dry, why not prevent it.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

does that mean no ear semi circula canals ive got that hmmmm charge is so

fun lol

>

> Hi , Ellen, , brandi and others,

>

> A little update on my daughter, with coloboma, also facial nerve palsy(

> acquired)

> we got the CT results. did not talk to the doctor yet.

>

> A few questions on facial palsy. CT scan report says - near complete

> opacification of the mastoid air cells. Also middle ear opacification

> 7th cranial nerves appear slightly small, more pronounced on the right

> than

> the left (right side is the palsy)

> Anybody know what this is. Doctor's nurse said, doctor will have

> aconference

> with the radialogist and give us a call.

> Please let me know if you know anything what this mean. Is it serious. She

> recently had fluid which was taken out before the CT.

>

> Thanks

> Rita

>

>

>

>

> >

> > I think the doctors blow off the facial nerve palsy because there isn't

> > really anything that can be done for it (except for that facial

> reanimation

> > procedure I mentioned, but that's pretty new and I don't think very many

> > have been done). Also, having the palsy isn't a life or death

> issue. It's

> > cosmetically unappealing, and there can be some eye dryness, but in the

> > larger scheme of things...

> >

> > I agree with you on prevantative lubrication--It's not going to hurt

> > things. Visine tears are OK--just don't use anything that " gets the red

> > out. " Refresh, Systane, and TheraTears are all good brands. As long as

> you

> > are using them less than 4 times per day, the bottle kind of tears are

> > fine. If you are using them more frequently, you really should be using

> the

> > preservative-free ones (they come in little plastic tubes), so you

> aren't

> > dumping too many preservatives onto the eye surface. We use Celluvisc

> for

> > Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> > lasts a little longer.

> >

> > One way to tell if the eyes are in need of the tears, is to look and see

> > if you see any mucus on the eye surface. It is clear, and will make

> little

> > strands across the eye surface from the lids. If you see any of that,

> you

> > need tears!

> >

> > (mom to Evan 8.5 mos and an optometrist)

> >

> > Rita Crowley wrote:

> > Been a bit busy. but thanks for the useful information about facial

> palsy

> >

> > Sara

> > thanks for sharing information about your son Evan's facial palsy.

> > My daughter closes her right eye (the side with the palsy), while

> > she sleeps. Last time we had been to eye doctor in feb, she did not

> suggest

> > any drops for her(as she did not notice her eyes to be dry). But i

> recently

> > got some visine tears (did not start putting them) and talked to the

> doctor.

> > My main concern is - before it gets dry, why not prevent it.

> >

> >

> > ---------------------------------

> > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> low,

> > low rates.

> >

> >

[Guest guest]

Hi Rita,

This is just my best guess at interpretation (based on a quick read on

mastoiditis on emedicine.com). Infections and fluid will show up as opacified

areas on CT (CTs are basically 3-D xrays; think of a chest xray--infected lungs

have more white/light colored opacified areas). Most people with middle ear

infections also have some degree of inflammation/infection of the mastoid bone

(it's the bony bump behind your ear, and it has a sponge-like structure to

it--the " air cells " ). When the middle ear is infected, it fills with fluid and

becomes opaque to the CT scan. Similarly, the " air " cells in the mastoid become

fluid-filled, and then opaque to the CT. Based on what the CT report says, I

would guess that your daughter has some mastoiditis going on, in addition to a

middle ear infection.

As far as the 7th nerve findings, the smaller nerve correlates with the side

with less function (the palsy). From my reading about CHARGE, it's pretty

common for the cranial nerves to be smaller than normal and to be located in

unusual places. I am just theorizing here, but since so many of the birth

defects of CHARGE stem from something not forming completely (i.e., the coloboma

is a failure of the eyeball to close entirely as it forms, heart defects are a

failure of the holes in the heart to close properly, pelvic kidneys the result

of the kidneys not making it to where they are supposed to be), that it only

makes sense that the nerves are smaller because the nuclei in the brain are not

forming correctly (not meaning to lose anyone here--the nuclei is a collection

of neuron cell bodies--the " brain " of the nerve cell, and the nerve is just a

bundle of cellular wires connecting the cell bodies to the body part the nerve

serves). Anyway, I digress...

I'm surprised they gave you the radiology report without talking with your

doctor first--that's just asking to cause extra anxiety for a parent. I hope

your conference with the doctors goes well and you get some answers to your

questions.

Rita Crowley wrote:

Hi , Ellen, , brandi and others,

A little update on my daughter, with coloboma, also facial nerve palsy(

acquired)

we got the CT results. did not talk to the doctor yet.

A few questions on facial palsy. CT scan report says - near complete

opacification of the mastoid air cells. Also middle ear opacification

7th cranial nerves appear slightly small, more pronounced on the right than

the left (right side is the palsy)

Anybody know what this is. Doctor's nurse said, doctor will have aconference

with the radialogist and give us a call.

Please let me know if you know anything what this mean. Is it serious. She

recently had fluid which was taken out before the CT.

Thanks

Rita

>

> I think the doctors blow off the facial nerve palsy because there isn't

> really anything that can be done for it (except for that facial reanimation

> procedure I mentioned, but that's pretty new and I don't think very many

> have been done). Also, having the palsy isn't a life or death issue. It's

> cosmetically unappealing, and there can be some eye dryness, but in the

> larger scheme of things...

>

> I agree with you on prevantative lubrication--It's not going to hurt

> things. Visine tears are OK--just don't use anything that " gets the red

> out. " Refresh, Systane, and TheraTears are all good brands. As long as you

> are using them less than 4 times per day, the bottle kind of tears are

> fine. If you are using them more frequently, you really should be using the

> preservative-free ones (they come in little plastic tubes), so you aren't

> dumping too many preservatives onto the eye surface. We use Celluvisc for

> Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> lasts a little longer.

>

> One way to tell if the eyes are in need of the tears, is to look and see

> if you see any mucus on the eye surface. It is clear, and will make little

> strands across the eye surface from the lids. If you see any of that, you

> need tears!

>

> (mom to Evan 8.5 mos and an optometrist)

>

> Rita Crowley wrote:

> Been a bit busy. but thanks for the useful information about facial palsy

>

> Sara

> thanks for sharing information about your son Evan's facial palsy.

> My daughter closes her right eye (the side with the palsy), while

> she sleeps. Last time we had been to eye doctor in feb, she did not suggest

> any drops for her(as she did not notice her eyes to be dry). But i recently

> got some visine tears (did not start putting them) and talked to the doctor.

> My main concern is - before it gets dry, why not prevent it.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

sarah i liek ur theories i think ive had mastoist not sure but ti was

soemthing like that they were gonan do surgery but they didnt have to hugs

ellen

>

> Hi Rita,

>

> This is just my best guess at interpretation (based on a quick read on

> mastoiditis on emedicine.com). Infections and fluid will show up as

> opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> xray--infected lungs have more white/light colored opacified areas). Most

> people with middle ear infections also have some degree of

> inflammation/infection of the mastoid bone (it's the bony bump behind your

> ear, and it has a sponge-like structure to it--the " air cells " ). When the

> middle ear is infected, it fills with fluid and becomes opaque to the CT

> scan. Similarly, the " air " cells in the mastoid become fluid-filled, and

> then opaque to the CT. Based on what the CT report says, I would guess that

> your daughter has some mastoiditis going on, in addition to a middle ear

> infection.

>

> As far as the 7th nerve findings, the smaller nerve correlates with the

> side with less function (the palsy). From my reading about CHARGE, it's

> pretty common for the cranial nerves to be smaller than normal and to be

> located in unusual places. I am just theorizing here, but since so many of

> the birth defects of CHARGE stem from something not forming completely (

> i.e., the coloboma is a failure of the eyeball to close entirely as it

> forms, heart defects are a failure of the holes in the heart to close

> properly, pelvic kidneys the result of the kidneys not making it to where

> they are supposed to be), that it only makes sense that the nerves are

> smaller because the nuclei in the brain are not forming correctly (not

> meaning to lose anyone here--the nuclei is a collection of neuron cell

> bodies--the " brain " of the nerve cell, and the nerve is just a bundle of

> cellular wires connecting the cell bodies to the body part the nerve

> serves). Anyway, I digress...

>

> I'm surprised they gave you the radiology report without talking with your

> doctor first--that's just asking to cause extra anxiety for a parent. I

> hope your conference with the doctors goes well and you get some answers to

> your questions.

>

>

>

> Rita Crowley wrote:

> Hi , Ellen, , brandi and others,

>

> A little update on my daughter, with coloboma, also facial nerve palsy(

> acquired)

> we got the CT results. did not talk to the doctor yet.

>

> A few questions on facial palsy. CT scan report says - near complete

> opacification of the mastoid air cells. Also middle ear opacification

> 7th cranial nerves appear slightly small, more pronounced on the right

> than

> the left (right side is the palsy)

> Anybody know what this is. Doctor's nurse said, doctor will have

> aconference

> with the radialogist and give us a call.

> Please let me know if you know anything what this mean. Is it serious. She

> recently had fluid which was taken out before the CT.

>

> Thanks

> Rita

>

>

>

>

> >

> > I think the doctors blow off the facial nerve palsy because there isn't

> > really anything that can be done for it (except for that facial

> reanimation

> > procedure I mentioned, but that's pretty new and I don't think very many

> > have been done). Also, having the palsy isn't a life or death

> issue. It's

> > cosmetically unappealing, and there can be some eye dryness, but in the

> > larger scheme of things...

> >

> > I agree with you on prevantative lubrication--It's not going to hurt

> > things. Visine tears are OK--just don't use anything that " gets the red

> > out. " Refresh, Systane, and TheraTears are all good brands. As long as

> you

> > are using them less than 4 times per day, the bottle kind of tears are

> > fine. If you are using them more frequently, you really should be using

> the

> > preservative-free ones (they come in little plastic tubes), so you

> aren't

> > dumping too many preservatives onto the eye surface. We use Celluvisc

> for

> > Evan--it's a thicker, preservative-free tear. Because it's thicker, it

> > lasts a little longer.

> >

> > One way to tell if the eyes are in need of the tears, is to look and see

> > if you see any mucus on the eye surface. It is clear, and will make

> little

> > strands across the eye surface from the lids. If you see any of that,

> you

> > need tears!

> >

> > (mom to Evan 8.5 mos and an optometrist)

> >

> > Rita Crowley wrote:

> > Been a bit busy. but thanks for the useful information about facial

> palsy

> >

> > Sara

> > thanks for sharing information about your son Evan's facial palsy.

> > My daughter closes her right eye (the side with the palsy), while

> > she sleeps. Last time we had been to eye doctor in feb, she did not

> suggest

> > any drops for her(as she did not notice her eyes to be dry). But i

> recently

> > got some visine tears (did not start putting them) and talked to the

> doctor.

> > My main concern is - before it gets dry, why not prevent it.

> >

> >

> > ---------------------------------

> > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> low,

> > low rates.

> >

> >

[Guest guest]

Thanks Sara and Ellen for your replies.

I was also doing some readin gon the internet about what all these terms

mean.

They sent the report to us as we asked for it.

ENT doctor, i guess will have a conference with radialogist and then give us

a call.

he had fluid, thats why she got fitted with tubes, But i guess inside the

bone, it still is there.

If it is bone related or bone is infected, may be we need to act fast.

anyway, will keep you guys posted

, facial nerves being small is common in Charge. Might be. I did not

know about this.

but the thing that concerns me is - with these small nerves, she was ok till

9 months.

and then suddenly, the right side stopped moving. So my hope now is the

palsy could be because of fluid.

Will see.

Later.

Rita

>

> sarah i liek ur theories i think ive had mastoist not sure but ti was

> soemthing like that they were gonan do surgery but they didnt have to hugs

> ellen

>

>

> >

> > Hi Rita,

> >

> > This is just my best guess at interpretation (based on a quick read on

> > mastoiditis on emedicine.com). Infections and fluid will show up as

> > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > xray--infected lungs have more white/light colored opacified

> areas). Most

> > people with middle ear infections also have some degree of

> > inflammation/infection of the mastoid bone (it's the bony bump behind

> your

> > ear, and it has a sponge-like structure to it--the " air cells " ). When

> the

> > middle ear is infected, it fills with fluid and becomes opaque to the CT

> > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> and

> > then opaque to the CT. Based on what the CT report says, I would guess

> that

> > your daughter has some mastoiditis going on, in addition to a middle ear

> > infection.

> >

> > As far as the 7th nerve findings, the smaller nerve correlates with the

> > side with less function (the palsy). From my reading about CHARGE, it's

> > pretty common for the cranial nerves to be smaller than normal and to be

> > located in unusual places. I am just theorizing here, but since so many

> of

> > the birth defects of CHARGE stem from something not forming completely (

> > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > forms, heart defects are a failure of the holes in the heart to close

> > properly, pelvic kidneys the result of the kidneys not making it to

> where

> > they are supposed to be), that it only makes sense that the nerves are

> > smaller because the nuclei in the brain are not forming correctly (not

> > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > bodies--the " brain " of the nerve cell, and the nerve is just a bundle of

> > cellular wires connecting the cell bodies to the body part the nerve

> > serves). Anyway, I digress...

> >

> > I'm surprised they gave you the radiology report without talking with

> your

> > doctor first--that's just asking to cause extra anxiety for a parent. I

> > hope your conference with the doctors goes well and you get some answers

> to

> > your questions.

> >

> >

> >

> > Rita Crowley wrote:

> > Hi , Ellen, , brandi and others,

> >

> > A little update on my daughter, with coloboma, also facial nerve palsy(

> > acquired)

> > we got the CT results. did not talk to the doctor yet.

> >

> > A few questions on facial palsy. CT scan report says - near complete

> > opacification of the mastoid air cells. Also middle ear opacification

> > 7th cranial nerves appear slightly small, more pronounced on the right

> > than

> > the left (right side is the palsy)

> > Anybody know what this is. Doctor's nurse said, doctor will have

> > aconference

> > with the radialogist and give us a call.

> > Please let me know if you know anything what this mean. Is it serious.

> She

> > recently had fluid which was taken out before the CT.

> >

> > Thanks

> > Rita

> >

> >

> >

> >

> > >

> > > I think the doctors blow off the facial nerve palsy because there

> isn't

> > > really anything that can be done for it (except for that facial

> > reanimation

> > > procedure I mentioned, but that's pretty new and I don't think very

> many

> > > have been done). Also, having the palsy isn't a life or death

> > issue. It's

> > > cosmetically unappealing, and there can be some eye dryness, but in

> the

> > > larger scheme of things...

> > >

> > > I agree with you on prevantative lubrication--It's not going to hurt

> > > things. Visine tears are OK--just don't use anything that " gets the

> red

> > > out. " Refresh, Systane, and TheraTears are all good brands. As long

> as

> > you

> > > are using them less than 4 times per day, the bottle kind of tears are

> > > fine. If you are using them more frequently, you really should be

> using

> > the

> > > preservative-free ones (they come in little plastic tubes), so you

> > aren't

> > > dumping too many preservatives onto the eye surface. We use Celluvisc

> > for

> > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> it

> > > lasts a little longer.

> > >

> > > One way to tell if the eyes are in need of the tears, is to look and

> see

> > > if you see any mucus on the eye surface. It is clear, and will make

> > little

> > > strands across the eye surface from the lids. If you see any of that,

> > you

> > > need tears!

> > >

> > > (mom to Evan 8.5 mos and an optometrist)

> > >

> > > Rita Crowley wrote:

> > > Been a bit busy. but thanks for the useful information about facial

> > palsy

> > >

> > > Sara

> > > thanks for sharing information about your son Evan's facial palsy.

> > > My daughter closes her right eye (the side with the palsy),

> while

> > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > suggest

> > > any drops for her(as she did not notice her eyes to be dry). But i

> > recently

> > > got some visine tears (did not start putting them) and talked to the

> > doctor.

> > > My main concern is - before it gets dry, why not prevent it.

> > >

> > >

> > > ---------------------------------

> > > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> > low,

> > > low rates.

> > >

> > >

[Guest guest]

Thanks Sara and Ellen for your replies.

I was also doing some readin gon the internet about what all these terms

mean.

They sent the report to us as we asked for it.

ENT doctor, i guess will have a conference with radialogist and then give us

a call.

he had fluid, thats why she got fitted with tubes, But i guess inside the

bone, it still is there.

If it is bone related or bone is infected, may be we need to act fast.

anyway, will keep you guys posted

, facial nerves being small is common in Charge. Might be. I did not

know about this.

but the thing that concerns me is - with these small nerves, she was ok till

9 months.

and then suddenly, the right side stopped moving. So my hope now is the

palsy could be because of fluid.

Will see.

Later.

Rita

>

> sarah i liek ur theories i think ive had mastoist not sure but ti was

> soemthing like that they were gonan do surgery but they didnt have to hugs

> ellen

>

>

> >

> > Hi Rita,

> >

> > This is just my best guess at interpretation (based on a quick read on

> > mastoiditis on emedicine.com). Infections and fluid will show up as

> > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > xray--infected lungs have more white/light colored opacified

> areas). Most

> > people with middle ear infections also have some degree of

> > inflammation/infection of the mastoid bone (it's the bony bump behind

> your

> > ear, and it has a sponge-like structure to it--the " air cells " ). When

> the

> > middle ear is infected, it fills with fluid and becomes opaque to the CT

> > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> and

> > then opaque to the CT. Based on what the CT report says, I would guess

> that

> > your daughter has some mastoiditis going on, in addition to a middle ear

> > infection.

> >

> > As far as the 7th nerve findings, the smaller nerve correlates with the

> > side with less function (the palsy). From my reading about CHARGE, it's

> > pretty common for the cranial nerves to be smaller than normal and to be

> > located in unusual places. I am just theorizing here, but since so many

> of

> > the birth defects of CHARGE stem from something not forming completely (

> > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > forms, heart defects are a failure of the holes in the heart to close

> > properly, pelvic kidneys the result of the kidneys not making it to

> where

> > they are supposed to be), that it only makes sense that the nerves are

> > smaller because the nuclei in the brain are not forming correctly (not

> > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > bodies--the " brain " of the nerve cell, and the nerve is just a bundle of

> > cellular wires connecting the cell bodies to the body part the nerve

> > serves). Anyway, I digress...

> >

> > I'm surprised they gave you the radiology report without talking with

> your

> > doctor first--that's just asking to cause extra anxiety for a parent. I

> > hope your conference with the doctors goes well and you get some answers

> to

> > your questions.

> >

> >

> >

> > Rita Crowley wrote:

> > Hi , Ellen, , brandi and others,

> >

> > A little update on my daughter, with coloboma, also facial nerve palsy(

> > acquired)

> > we got the CT results. did not talk to the doctor yet.

> >

> > A few questions on facial palsy. CT scan report says - near complete

> > opacification of the mastoid air cells. Also middle ear opacification

> > 7th cranial nerves appear slightly small, more pronounced on the right

> > than

> > the left (right side is the palsy)

> > Anybody know what this is. Doctor's nurse said, doctor will have

> > aconference

> > with the radialogist and give us a call.

> > Please let me know if you know anything what this mean. Is it serious.

> She

> > recently had fluid which was taken out before the CT.

> >

> > Thanks

> > Rita

> >

> >

> >

> >

> > >

> > > I think the doctors blow off the facial nerve palsy because there

> isn't

> > > really anything that can be done for it (except for that facial

> > reanimation

> > > procedure I mentioned, but that's pretty new and I don't think very

> many

> > > have been done). Also, having the palsy isn't a life or death

> > issue. It's

> > > cosmetically unappealing, and there can be some eye dryness, but in

> the

> > > larger scheme of things...

> > >

> > > I agree with you on prevantative lubrication--It's not going to hurt

> > > things. Visine tears are OK--just don't use anything that " gets the

> red

> > > out. " Refresh, Systane, and TheraTears are all good brands. As long

> as

> > you

> > > are using them less than 4 times per day, the bottle kind of tears are

> > > fine. If you are using them more frequently, you really should be

> using

> > the

> > > preservative-free ones (they come in little plastic tubes), so you

> > aren't

> > > dumping too many preservatives onto the eye surface. We use Celluvisc

> > for

> > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> it

> > > lasts a little longer.

> > >

> > > One way to tell if the eyes are in need of the tears, is to look and

> see

> > > if you see any mucus on the eye surface. It is clear, and will make

> > little

> > > strands across the eye surface from the lids. If you see any of that,

> > you

> > > need tears!

> > >

> > > (mom to Evan 8.5 mos and an optometrist)

> > >

> > > Rita Crowley wrote:

> > > Been a bit busy. but thanks for the useful information about facial

> > palsy

> > >

> > > Sara

> > > thanks for sharing information about your son Evan's facial palsy.

> > > My daughter closes her right eye (the side with the palsy),

> while

> > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > suggest

> > > any drops for her(as she did not notice her eyes to be dry). But i

> > recently

> > > got some visine tears (did not start putting them) and talked to the

> > doctor.

> > > My main concern is - before it gets dry, why not prevent it.

> > >

> > >

> > > ---------------------------------

> > > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> > low,

> > > low rates.

> > >

> > >

[Guest guest]

Thanks Sara and Ellen for your replies.

I was also doing some readin gon the internet about what all these terms

mean.

They sent the report to us as we asked for it.

ENT doctor, i guess will have a conference with radialogist and then give us

a call.

he had fluid, thats why she got fitted with tubes, But i guess inside the

bone, it still is there.

If it is bone related or bone is infected, may be we need to act fast.

anyway, will keep you guys posted

, facial nerves being small is common in Charge. Might be. I did not

know about this.

but the thing that concerns me is - with these small nerves, she was ok till

9 months.

and then suddenly, the right side stopped moving. So my hope now is the

palsy could be because of fluid.

Will see.

Later.

Rita

>

> sarah i liek ur theories i think ive had mastoist not sure but ti was

> soemthing like that they were gonan do surgery but they didnt have to hugs

> ellen

>

>

> >

> > Hi Rita,

> >

> > This is just my best guess at interpretation (based on a quick read on

> > mastoiditis on emedicine.com). Infections and fluid will show up as

> > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > xray--infected lungs have more white/light colored opacified

> areas). Most

> > people with middle ear infections also have some degree of

> > inflammation/infection of the mastoid bone (it's the bony bump behind

> your

> > ear, and it has a sponge-like structure to it--the " air cells " ). When

> the

> > middle ear is infected, it fills with fluid and becomes opaque to the CT

> > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> and

> > then opaque to the CT. Based on what the CT report says, I would guess

> that

> > your daughter has some mastoiditis going on, in addition to a middle ear

> > infection.

> >

> > As far as the 7th nerve findings, the smaller nerve correlates with the

> > side with less function (the palsy). From my reading about CHARGE, it's

> > pretty common for the cranial nerves to be smaller than normal and to be

> > located in unusual places. I am just theorizing here, but since so many

> of

> > the birth defects of CHARGE stem from something not forming completely (

> > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > forms, heart defects are a failure of the holes in the heart to close

> > properly, pelvic kidneys the result of the kidneys not making it to

> where

> > they are supposed to be), that it only makes sense that the nerves are

> > smaller because the nuclei in the brain are not forming correctly (not

> > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > bodies--the " brain " of the nerve cell, and the nerve is just a bundle of

> > cellular wires connecting the cell bodies to the body part the nerve

> > serves). Anyway, I digress...

> >

> > I'm surprised they gave you the radiology report without talking with

> your

> > doctor first--that's just asking to cause extra anxiety for a parent. I

> > hope your conference with the doctors goes well and you get some answers

> to

> > your questions.

> >

> >

> >

> > Rita Crowley wrote:

> > Hi , Ellen, , brandi and others,

> >

> > A little update on my daughter, with coloboma, also facial nerve palsy(

> > acquired)

> > we got the CT results. did not talk to the doctor yet.

> >

> > A few questions on facial palsy. CT scan report says - near complete

> > opacification of the mastoid air cells. Also middle ear opacification

> > 7th cranial nerves appear slightly small, more pronounced on the right

> > than

> > the left (right side is the palsy)

> > Anybody know what this is. Doctor's nurse said, doctor will have

> > aconference

> > with the radialogist and give us a call.

> > Please let me know if you know anything what this mean. Is it serious.

> She

> > recently had fluid which was taken out before the CT.

> >

> > Thanks

> > Rita

> >

> >

> >

> >

> > >

> > > I think the doctors blow off the facial nerve palsy because there

> isn't

> > > really anything that can be done for it (except for that facial

> > reanimation

> > > procedure I mentioned, but that's pretty new and I don't think very

> many

> > > have been done). Also, having the palsy isn't a life or death

> > issue. It's

> > > cosmetically unappealing, and there can be some eye dryness, but in

> the

> > > larger scheme of things...

> > >

> > > I agree with you on prevantative lubrication--It's not going to hurt

> > > things. Visine tears are OK--just don't use anything that " gets the

> red

> > > out. " Refresh, Systane, and TheraTears are all good brands. As long

> as

> > you

> > > are using them less than 4 times per day, the bottle kind of tears are

> > > fine. If you are using them more frequently, you really should be

> using

> > the

> > > preservative-free ones (they come in little plastic tubes), so you

> > aren't

> > > dumping too many preservatives onto the eye surface. We use Celluvisc

> > for

> > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> it

> > > lasts a little longer.

> > >

> > > One way to tell if the eyes are in need of the tears, is to look and

> see

> > > if you see any mucus on the eye surface. It is clear, and will make

> > little

> > > strands across the eye surface from the lids. If you see any of that,

> > you

> > > need tears!

> > >

> > > (mom to Evan 8.5 mos and an optometrist)

> > >

> > > Rita Crowley wrote:

> > > Been a bit busy. but thanks for the useful information about facial

> > palsy

> > >

> > > Sara

> > > thanks for sharing information about your son Evan's facial palsy.

> > > My daughter closes her right eye (the side with the palsy),

> while

> > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > suggest

> > > any drops for her(as she did not notice her eyes to be dry). But i

> > recently

> > > got some visine tears (did not start putting them) and talked to the

> > doctor.

> > > My main concern is - before it gets dry, why not prevent it.

> > >

> > >

> > > ---------------------------------

> > > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> > low,

> > > low rates.

> > >

> > >

[Guest guest]

Rita,

The facial nerve exits the skull just in front of the ear. It is pretty well

surrounded by a bony canal, but if there is infection in the bone than maybe

compression is a factor in the palsy. I know from experience with my son that

facial palsys can change over time anyway. Wishing you answers.

Rita Crowley wrote:

Thanks Sara and Ellen for your replies.

I was also doing some readin gon the internet about what all these terms

mean.

They sent the report to us as we asked for it.

ENT doctor, i guess will have a conference with radialogist and then give us

a call.

he had fluid, thats why she got fitted with tubes, But i guess inside the

bone, it still is there.

If it is bone related or bone is infected, may be we need to act fast.

anyway, will keep you guys posted

, facial nerves being small is common in Charge. Might be. I did not

know about this.

but the thing that concerns me is - with these small nerves, she was ok till

9 months.

and then suddenly, the right side stopped moving. So my hope now is the

palsy could be because of fluid.

Will see.

Later.

Rita

>

> sarah i liek ur theories i think ive had mastoist not sure but ti was

> soemthing like that they were gonan do surgery but they didnt have to hugs

> ellen

>

>

> >

> > Hi Rita,

> >

> > This is just my best guess at interpretation (based on a quick read on

> > mastoiditis on emedicine.com). Infections and fluid will show up as

> > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > xray--infected lungs have more white/light colored opacified

> areas). Most

> > people with middle ear infections also have some degree of

> > inflammation/infection of the mastoid bone (it's the bony bump behind

> your

> > ear, and it has a sponge-like structure to it--the " air cells " ). When

> the

> > middle ear is infected, it fills with fluid and becomes opaque to the CT

> > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> and

> > then opaque to the CT. Based on what the CT report says, I would guess

> that

> > your daughter has some mastoiditis going on, in addition to a middle ear

> > infection.

> >

> > As far as the 7th nerve findings, the smaller nerve correlates with the

> > side with less function (the palsy). From my reading about CHARGE, it's

> > pretty common for the cranial nerves to be smaller than normal and to be

> > located in unusual places. I am just theorizing here, but since so many

> of

> > the birth defects of CHARGE stem from something not forming completely (

> > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > forms, heart defects are a failure of the holes in the heart to close

> > properly, pelvic kidneys the result of the kidneys not making it to

> where

> > they are supposed to be), that it only makes sense that the nerves are

> > smaller because the nuclei in the brain are not forming correctly (not

> > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > bodies--the " brain " of the nerve cell, and the nerve is just a bundle of

> > cellular wires connecting the cell bodies to the body part the nerve

> > serves). Anyway, I digress...

> >

> > I'm surprised they gave you the radiology report without talking with

> your

> > doctor first--that's just asking to cause extra anxiety for a parent. I

> > hope your conference with the doctors goes well and you get some answers

> to

> > your questions.

> >

> >

> >

> > Rita Crowley wrote:

> > Hi , Ellen, , brandi and others,

> >

> > A little update on my daughter, with coloboma, also facial nerve palsy(

> > acquired)

> > we got the CT results. did not talk to the doctor yet.

> >

> > A few questions on facial palsy. CT scan report says - near complete

> > opacification of the mastoid air cells. Also middle ear opacification

> > 7th cranial nerves appear slightly small, more pronounced on the right

> > than

> > the left (right side is the palsy)

> > Anybody know what this is. Doctor's nurse said, doctor will have

> > aconference

> > with the radialogist and give us a call.

> > Please let me know if you know anything what this mean. Is it serious.

> She

> > recently had fluid which was taken out before the CT.

> >

> > Thanks

> > Rita

> >

> >

> >

> >

> > >

> > > I think the doctors blow off the facial nerve palsy because there

> isn't

> > > really anything that can be done for it (except for that facial

> > reanimation

> > > procedure I mentioned, but that's pretty new and I don't think very

> many

> > > have been done). Also, having the palsy isn't a life or death

> > issue. It's

> > > cosmetically unappealing, and there can be some eye dryness, but in

> the

> > > larger scheme of things...

> > >

> > > I agree with you on prevantative lubrication--It's not going to hurt

> > > things. Visine tears are OK--just don't use anything that " gets the

> red

> > > out. " Refresh, Systane, and TheraTears are all good brands. As long

> as

> > you

> > > are using them less than 4 times per day, the bottle kind of tears are

> > > fine. If you are using them more frequently, you really should be

> using

> > the

> > > preservative-free ones (they come in little plastic tubes), so you

> > aren't

> > > dumping too many preservatives onto the eye surface. We use Celluvisc

> > for

> > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> it

> > > lasts a little longer.

> > >

> > > One way to tell if the eyes are in need of the tears, is to look and

> see

> > > if you see any mucus on the eye surface. It is clear, and will make

> > little

> > > strands across the eye surface from the lids. If you see any of that,

> > you

> > > need tears!

> > >

> > > (mom to Evan 8.5 mos and an optometrist)

> > >

> > > Rita Crowley wrote:

> > > Been a bit busy. but thanks for the useful information about facial

> > palsy

> > >

> > > Sara

> > > thanks for sharing information about your son Evan's facial palsy.

> > > My daughter closes her right eye (the side with the palsy),

> while

> > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > suggest

> > > any drops for her(as she did not notice her eyes to be dry). But i

> > recently

> > > got some visine tears (did not start putting them) and talked to the

> > doctor.

> > > My main concern is - before it gets dry, why not prevent it.

> > >

> > >

> > > ---------------------------------

> > > New Yahoo! Messenger with Voice. Call regular phones from your PC for

> > low,

> > > low rates.

> > >

> > >

[Guest guest]

Thanks for the info.

we are still waiting for the call from the ENT doctor.

One more thing, my daughter was diagonised with conductive hearing loss - 6

months back.

But before that, she had couple of ABRs which showed mixed mild to moderate

hearing loss.

and finally in bone conduction test, they ruled out sensoryneural hearing

loss.

But now in CT scan, there is a comment that - " deficient apical turns of

the cochleas "

does this mean she actually has sensorineural loss.

she has hearing aids now. and she responds to sound well. even does some

actions when we vocalise.

All this is so confusing and scary.

she had a CT scan at birth which was normal. Now this one says, something

wrong with cochlea.

Not sure whats going on.

whom to trust.

Anybody on this group - been treated for mastoiditis. Please let me know.

what are the options for aggressive treatment.

is surgical alternative better than antibiotics (I mean faster to get rid of

the infection)

Thanks to all

Rita

>

> Rita,

>

> The facial nerve exits the skull just in front of the ear. It is pretty

> well surrounded by a bony canal, but if there is infection in the bone than

> maybe compression is a factor in the palsy. I know from experience with my

> son that facial palsys can change over time anyway. Wishing you answers.

>

>

>

> Rita Crowley wrote:

> Thanks Sara and Ellen for your replies.

>

> I was also doing some readin gon the internet about what all these terms

> mean.

> They sent the report to us as we asked for it.

> ENT doctor, i guess will have a conference with radialogist and then give

> us

> a call.

> he had fluid, thats why she got fitted with tubes, But i guess inside the

> bone, it still is there.

> If it is bone related or bone is infected, may be we need to act fast.

> anyway, will keep you guys posted

>

> , facial nerves being small is common in Charge. Might be. I did not

> know about this.

> but the thing that concerns me is - with these small nerves, she was ok

> till

> 9 months.

> and then suddenly, the right side stopped moving. So my hope now is the

> palsy could be because of fluid.

> Will see.

>

> Later.

> Rita

>

>

>

> >

> > sarah i liek ur theories i think ive had mastoist not sure but ti was

> > soemthing like that they were gonan do surgery but they didnt have to

> hugs

> > ellen

> >

> >

> > >

> > > Hi Rita,

> > >

> > > This is just my best guess at interpretation (based on a quick read on

> > > mastoiditis on emedicine.com). Infections and fluid will show up as

> > > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > > xray--infected lungs have more white/light colored opacified

> > areas). Most

> > > people with middle ear infections also have some degree of

> > > inflammation/infection of the mastoid bone (it's the bony bump behind

> > your

> > > ear, and it has a sponge-like structure to it--the " air cells " ). When

> > the

> > > middle ear is infected, it fills with fluid and becomes opaque to the

> CT

> > > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> > and

> > > then opaque to the CT. Based on what the CT report says, I would

> guess

> > that

> > > your daughter has some mastoiditis going on, in addition to a middle

> ear

> > > infection.

> > >

> > > As far as the 7th nerve findings, the smaller nerve correlates with

> the

> > > side with less function (the palsy). From my reading about CHARGE,

> it's

> > > pretty common for the cranial nerves to be smaller than normal and to

> be

> > > located in unusual places. I am just theorizing here, but since so

> many

> > of

> > > the birth defects of CHARGE stem from something not forming completely

> (

> > > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > > forms, heart defects are a failure of the holes in the heart to close

> > > properly, pelvic kidneys the result of the kidneys not making it to

> > where

> > > they are supposed to be), that it only makes sense that the nerves are

> > > smaller because the nuclei in the brain are not forming correctly (not

> > > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > > bodies--the " brain " of the nerve cell, and the nerve is just a bundle

> of

> > > cellular wires connecting the cell bodies to the body part the nerve

> > > serves). Anyway, I digress...

> > >

> > > I'm surprised they gave you the radiology report without talking with

> > your

> > > doctor first--that's just asking to cause extra anxiety for a

> parent. I

> > > hope your conference with the doctors goes well and you get some

> answers

> > to

> > > your questions.

> > >

> > >

> > >

> > > Rita Crowley wrote:

> > > Hi , Ellen, , brandi and others,

> > >

> > > A little update on my daughter, with coloboma, also facial nerve

> palsy(

> > > acquired)

> > > we got the CT results. did not talk to the doctor yet.

> > >

> > > A few questions on facial palsy. CT scan report says - near complete

> > > opacification of the mastoid air cells. Also middle ear opacification

> > > 7th cranial nerves appear slightly small, more pronounced on the right

> > > than

> > > the left (right side is the palsy)

> > > Anybody know what this is. Doctor's nurse said, doctor will have

> > > aconference

> > > with the radialogist and give us a call.

> > > Please let me know if you know anything what this mean. Is it serious.

> > She

> > > recently had fluid which was taken out before the CT.

> > >

> > > Thanks

> > > Rita

> > >

> > >

> > >

> > >

> > > >

> > > > I think the doctors blow off the facial nerve palsy because there

> > isn't

> > > > really anything that can be done for it (except for that facial

> > > reanimation

> > > > procedure I mentioned, but that's pretty new and I don't think very

> > many

> > > > have been done). Also, having the palsy isn't a life or death

> > > issue. It's

> > > > cosmetically unappealing, and there can be some eye dryness, but in

> > the

> > > > larger scheme of things...

> > > >

> > > > I agree with you on prevantative lubrication--It's not going to hurt

> > > > things. Visine tears are OK--just don't use anything that " gets the

> > red

> > > > out. " Refresh, Systane, and TheraTears are all good brands. As

> long

> > as

> > > you

> > > > are using them less than 4 times per day, the bottle kind of tears

> are

> > > > fine. If you are using them more frequently, you really should be

> > using

> > > the

> > > > preservative-free ones (they come in little plastic tubes), so you

> > > aren't

> > > > dumping too many preservatives onto the eye surface. We use

> Celluvisc

> > > for

> > > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> > it

> > > > lasts a little longer.

> > > >

> > > > One way to tell if the eyes are in need of the tears, is to look and

> > see

> > > > if you see any mucus on the eye surface. It is clear, and will make

> > > little

> > > > strands across the eye surface from the lids. If you see any of

> that,

> > > you

> > > > need tears!

> > > >

> > > > (mom to Evan 8.5 mos and an optometrist)

> > > >

> > > > Rita Crowley wrote:

> > > > Been a bit busy. but thanks for the useful information about facial

> > > palsy

> > > >

> > > > Sara

> > > > thanks for sharing information about your son Evan's facial palsy.

> > > > My daughter closes her right eye (the side with the palsy),

> > while

> > > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > > suggest

> > > > any drops for her(as she did not notice her eyes to be dry). But i

> > > recently

> > > > got some visine tears (did not start putting them) and talked to the

> > > doctor.

> > > > My main concern is - before it gets dry, why not prevent it.

> > > >

> > > >

> > > > ---------------------------------

> > > > New Yahoo! Messenger with Voice. Call regular phones from your PC

> for

> > > low,

> > > > low rates.

> > > >

> > > >

[Guest guest]

Thanks for the info.

we are still waiting for the call from the ENT doctor.

One more thing, my daughter was diagonised with conductive hearing loss - 6

months back.

But before that, she had couple of ABRs which showed mixed mild to moderate

hearing loss.

and finally in bone conduction test, they ruled out sensoryneural hearing

loss.

But now in CT scan, there is a comment that - " deficient apical turns of

the cochleas "

does this mean she actually has sensorineural loss.

she has hearing aids now. and she responds to sound well. even does some

actions when we vocalise.

All this is so confusing and scary.

she had a CT scan at birth which was normal. Now this one says, something

wrong with cochlea.

Not sure whats going on.

whom to trust.

Anybody on this group - been treated for mastoiditis. Please let me know.

what are the options for aggressive treatment.

is surgical alternative better than antibiotics (I mean faster to get rid of

the infection)

Thanks to all

Rita

>

> Rita,

>

> The facial nerve exits the skull just in front of the ear. It is pretty

> well surrounded by a bony canal, but if there is infection in the bone than

> maybe compression is a factor in the palsy. I know from experience with my

> son that facial palsys can change over time anyway. Wishing you answers.

>

>

>

> Rita Crowley wrote:

> Thanks Sara and Ellen for your replies.

>

> I was also doing some readin gon the internet about what all these terms

> mean.

> They sent the report to us as we asked for it.

> ENT doctor, i guess will have a conference with radialogist and then give

> us

> a call.

> he had fluid, thats why she got fitted with tubes, But i guess inside the

> bone, it still is there.

> If it is bone related or bone is infected, may be we need to act fast.

> anyway, will keep you guys posted

>

> , facial nerves being small is common in Charge. Might be. I did not

> know about this.

> but the thing that concerns me is - with these small nerves, she was ok

> till

> 9 months.

> and then suddenly, the right side stopped moving. So my hope now is the

> palsy could be because of fluid.

> Will see.

>

> Later.

> Rita

>

>

>

> >

> > sarah i liek ur theories i think ive had mastoist not sure but ti was

> > soemthing like that they were gonan do surgery but they didnt have to

> hugs

> > ellen

> >

> >

> > >

> > > Hi Rita,

> > >

> > > This is just my best guess at interpretation (based on a quick read on

> > > mastoiditis on emedicine.com). Infections and fluid will show up as

> > > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > > xray--infected lungs have more white/light colored opacified

> > areas). Most

> > > people with middle ear infections also have some degree of

> > > inflammation/infection of the mastoid bone (it's the bony bump behind

> > your

> > > ear, and it has a sponge-like structure to it--the " air cells " ). When

> > the

> > > middle ear is infected, it fills with fluid and becomes opaque to the

> CT

> > > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> > and

> > > then opaque to the CT. Based on what the CT report says, I would

> guess

> > that

> > > your daughter has some mastoiditis going on, in addition to a middle

> ear

> > > infection.

> > >

> > > As far as the 7th nerve findings, the smaller nerve correlates with

> the

> > > side with less function (the palsy). From my reading about CHARGE,

> it's

> > > pretty common for the cranial nerves to be smaller than normal and to

> be

> > > located in unusual places. I am just theorizing here, but since so

> many

> > of

> > > the birth defects of CHARGE stem from something not forming completely

> (

> > > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > > forms, heart defects are a failure of the holes in the heart to close

> > > properly, pelvic kidneys the result of the kidneys not making it to

> > where

> > > they are supposed to be), that it only makes sense that the nerves are

> > > smaller because the nuclei in the brain are not forming correctly (not

> > > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > > bodies--the " brain " of the nerve cell, and the nerve is just a bundle

> of

> > > cellular wires connecting the cell bodies to the body part the nerve

> > > serves). Anyway, I digress...

> > >

> > > I'm surprised they gave you the radiology report without talking with

> > your

> > > doctor first--that's just asking to cause extra anxiety for a

> parent. I

> > > hope your conference with the doctors goes well and you get some

> answers

> > to

> > > your questions.

> > >

> > >

> > >

> > > Rita Crowley wrote:

> > > Hi , Ellen, , brandi and others,

> > >

> > > A little update on my daughter, with coloboma, also facial nerve

> palsy(

> > > acquired)

> > > we got the CT results. did not talk to the doctor yet.

> > >

> > > A few questions on facial palsy. CT scan report says - near complete

> > > opacification of the mastoid air cells. Also middle ear opacification

> > > 7th cranial nerves appear slightly small, more pronounced on the right

> > > than

> > > the left (right side is the palsy)

> > > Anybody know what this is. Doctor's nurse said, doctor will have

> > > aconference

> > > with the radialogist and give us a call.

> > > Please let me know if you know anything what this mean. Is it serious.

> > She

> > > recently had fluid which was taken out before the CT.

> > >

> > > Thanks

> > > Rita

> > >

> > >

> > >

> > >

> > > >

> > > > I think the doctors blow off the facial nerve palsy because there

> > isn't

> > > > really anything that can be done for it (except for that facial

> > > reanimation

> > > > procedure I mentioned, but that's pretty new and I don't think very

> > many

> > > > have been done). Also, having the palsy isn't a life or death

> > > issue. It's

> > > > cosmetically unappealing, and there can be some eye dryness, but in

> > the

> > > > larger scheme of things...

> > > >

> > > > I agree with you on prevantative lubrication--It's not going to hurt

> > > > things. Visine tears are OK--just don't use anything that " gets the

> > red

> > > > out. " Refresh, Systane, and TheraTears are all good brands. As

> long

> > as

> > > you

> > > > are using them less than 4 times per day, the bottle kind of tears

> are

> > > > fine. If you are using them more frequently, you really should be

> > using

> > > the

> > > > preservative-free ones (they come in little plastic tubes), so you

> > > aren't

> > > > dumping too many preservatives onto the eye surface. We use

> Celluvisc

> > > for

> > > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> > it

> > > > lasts a little longer.

> > > >

> > > > One way to tell if the eyes are in need of the tears, is to look and

> > see

> > > > if you see any mucus on the eye surface. It is clear, and will make

> > > little

> > > > strands across the eye surface from the lids. If you see any of

> that,

> > > you

> > > > need tears!

> > > >

> > > > (mom to Evan 8.5 mos and an optometrist)

> > > >

> > > > Rita Crowley wrote:

> > > > Been a bit busy. but thanks for the useful information about facial

> > > palsy

> > > >

> > > > Sara

> > > > thanks for sharing information about your son Evan's facial palsy.

> > > > My daughter closes her right eye (the side with the palsy),

> > while

> > > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > > suggest

> > > > any drops for her(as she did not notice her eyes to be dry). But i

> > > recently

> > > > got some visine tears (did not start putting them) and talked to the

> > > doctor.

> > > > My main concern is - before it gets dry, why not prevent it.

> > > >

> > > >

> > > > ---------------------------------

> > > > New Yahoo! Messenger with Voice. Call regular phones from your PC

> for

> > > low,

> > > > low rates.

> > > >

> > > >

[Guest guest]

Thanks for the info.

we are still waiting for the call from the ENT doctor.

One more thing, my daughter was diagonised with conductive hearing loss - 6

months back.

But before that, she had couple of ABRs which showed mixed mild to moderate

hearing loss.

and finally in bone conduction test, they ruled out sensoryneural hearing

loss.

But now in CT scan, there is a comment that - " deficient apical turns of

the cochleas "

does this mean she actually has sensorineural loss.

she has hearing aids now. and she responds to sound well. even does some

actions when we vocalise.

All this is so confusing and scary.

she had a CT scan at birth which was normal. Now this one says, something

wrong with cochlea.

Not sure whats going on.

whom to trust.

Anybody on this group - been treated for mastoiditis. Please let me know.

what are the options for aggressive treatment.

is surgical alternative better than antibiotics (I mean faster to get rid of

the infection)

Thanks to all

Rita

>

> Rita,

>

> The facial nerve exits the skull just in front of the ear. It is pretty

> well surrounded by a bony canal, but if there is infection in the bone than

> maybe compression is a factor in the palsy. I know from experience with my

> son that facial palsys can change over time anyway. Wishing you answers.

>

>

>

> Rita Crowley wrote:

> Thanks Sara and Ellen for your replies.

>

> I was also doing some readin gon the internet about what all these terms

> mean.

> They sent the report to us as we asked for it.

> ENT doctor, i guess will have a conference with radialogist and then give

> us

> a call.

> he had fluid, thats why she got fitted with tubes, But i guess inside the

> bone, it still is there.

> If it is bone related or bone is infected, may be we need to act fast.

> anyway, will keep you guys posted

>

> , facial nerves being small is common in Charge. Might be. I did not

> know about this.

> but the thing that concerns me is - with these small nerves, she was ok

> till

> 9 months.

> and then suddenly, the right side stopped moving. So my hope now is the

> palsy could be because of fluid.

> Will see.

>

> Later.

> Rita

>

>

>

> >

> > sarah i liek ur theories i think ive had mastoist not sure but ti was

> > soemthing like that they were gonan do surgery but they didnt have to

> hugs

> > ellen

> >

> >

> > >

> > > Hi Rita,

> > >

> > > This is just my best guess at interpretation (based on a quick read on

> > > mastoiditis on emedicine.com). Infections and fluid will show up as

> > > opacified areas on CT (CTs are basically 3-D xrays; think of a chest

> > > xray--infected lungs have more white/light colored opacified

> > areas). Most

> > > people with middle ear infections also have some degree of

> > > inflammation/infection of the mastoid bone (it's the bony bump behind

> > your

> > > ear, and it has a sponge-like structure to it--the " air cells " ). When

> > the

> > > middle ear is infected, it fills with fluid and becomes opaque to the

> CT

> > > scan. Similarly, the " air " cells in the mastoid become fluid-filled,

> > and

> > > then opaque to the CT. Based on what the CT report says, I would

> guess

> > that

> > > your daughter has some mastoiditis going on, in addition to a middle

> ear

> > > infection.

> > >

> > > As far as the 7th nerve findings, the smaller nerve correlates with

> the

> > > side with less function (the palsy). From my reading about CHARGE,

> it's

> > > pretty common for the cranial nerves to be smaller than normal and to

> be

> > > located in unusual places. I am just theorizing here, but since so

> many

> > of

> > > the birth defects of CHARGE stem from something not forming completely

> (

> > > i.e., the coloboma is a failure of the eyeball to close entirely as it

> > > forms, heart defects are a failure of the holes in the heart to close

> > > properly, pelvic kidneys the result of the kidneys not making it to

> > where

> > > they are supposed to be), that it only makes sense that the nerves are

> > > smaller because the nuclei in the brain are not forming correctly (not

> > > meaning to lose anyone here--the nuclei is a collection of neuron cell

> > > bodies--the " brain " of the nerve cell, and the nerve is just a bundle

> of

> > > cellular wires connecting the cell bodies to the body part the nerve

> > > serves). Anyway, I digress...

> > >

> > > I'm surprised they gave you the radiology report without talking with

> > your

> > > doctor first--that's just asking to cause extra anxiety for a

> parent. I

> > > hope your conference with the doctors goes well and you get some

> answers

> > to

> > > your questions.

> > >

> > >

> > >

> > > Rita Crowley wrote:

> > > Hi , Ellen, , brandi and others,

> > >

> > > A little update on my daughter, with coloboma, also facial nerve

> palsy(

> > > acquired)

> > > we got the CT results. did not talk to the doctor yet.

> > >

> > > A few questions on facial palsy. CT scan report says - near complete

> > > opacification of the mastoid air cells. Also middle ear opacification

> > > 7th cranial nerves appear slightly small, more pronounced on the right

> > > than

> > > the left (right side is the palsy)

> > > Anybody know what this is. Doctor's nurse said, doctor will have

> > > aconference

> > > with the radialogist and give us a call.

> > > Please let me know if you know anything what this mean. Is it serious.

> > She

> > > recently had fluid which was taken out before the CT.

> > >

> > > Thanks

> > > Rita

> > >

> > >

> > >

> > >

> > > >

> > > > I think the doctors blow off the facial nerve palsy because there

> > isn't

> > > > really anything that can be done for it (except for that facial

> > > reanimation

> > > > procedure I mentioned, but that's pretty new and I don't think very

> > many

> > > > have been done). Also, having the palsy isn't a life or death

> > > issue. It's

> > > > cosmetically unappealing, and there can be some eye dryness, but in

> > the

> > > > larger scheme of things...

> > > >

> > > > I agree with you on prevantative lubrication--It's not going to hurt

> > > > things. Visine tears are OK--just don't use anything that " gets the

> > red

> > > > out. " Refresh, Systane, and TheraTears are all good brands. As

> long

> > as

> > > you

> > > > are using them less than 4 times per day, the bottle kind of tears

> are

> > > > fine. If you are using them more frequently, you really should be

> > using

> > > the

> > > > preservative-free ones (they come in little plastic tubes), so you

> > > aren't

> > > > dumping too many preservatives onto the eye surface. We use

> Celluvisc

> > > for

> > > > Evan--it's a thicker, preservative-free tear. Because it's thicker,

> > it

> > > > lasts a little longer.

> > > >

> > > > One way to tell if the eyes are in need of the tears, is to look and

> > see

> > > > if you see any mucus on the eye surface. It is clear, and will make

> > > little

> > > > strands across the eye surface from the lids. If you see any of

> that,

> > > you

> > > > need tears!

> > > >

> > > > (mom to Evan 8.5 mos and an optometrist)

> > > >

> > > > Rita Crowley wrote:

> > > > Been a bit busy. but thanks for the useful information about facial

> > > palsy

> > > >

> > > > Sara

> > > > thanks for sharing information about your son Evan's facial palsy.

> > > > My daughter closes her right eye (the side with the palsy),

> > while

> > > > she sleeps. Last time we had been to eye doctor in feb, she did not

> > > suggest

> > > > any drops for her(as she did not notice her eyes to be dry). But i

> > > recently

> > > > got some visine tears (did not start putting them) and talked to the

> > > doctor.

> > > > My main concern is - before it gets dry, why not prevent it.

> > > >

> > > >

> > > > ---------------------------------

> > > > New Yahoo! Messenger with Voice. Call regular phones from your PC

> for

> > > low,

> > > > low rates.

> > > >

> > > >