Re: cholesteatoma/eye twitching

December 19, 2008

Hi ,

I have no idea what to tell you!! I know we've talked about this before, but

like you, I am at a loss... Masie has been complaining the last week, probably

since we had the snow here last week, that her face (ctoma side) has been

hurting really bad (may have been hurting before that but not quite as bad) and

when we went to the doctor on the 16th, I told him about it and she pointed out

the area and he seems to think the poor child is getting TMJ now. So I have no

clue as to why some people get certain things along with ctomas and other get

other things. It's really weird. I do hope someone has some insight for you and

can give you some info... I know you sure are tired of dealing with the

imbalance issues!

Pam

Pamela Waling " smile, it confuses people... "

> From: Captain Definder <captaindefinder@...>

> Subject: cholesteatoma/eye twitching

> cholesteatoma

> Date: Friday, December 19, 2008, 7:54 PM

> Hi Everyone,

>

> At the beginning of my cholesteatoma journey this year I

> started with bell's palsy first then 6 months later

> discovered the cholesteatoma which the doctor said

> contributed to the bell's palsy. The bell's palsy

> cleared up after about 3 months (thank goodness) - however,

> this past week I have severe eye twitching on my bell's

> palsy/cholesteatoma side. Everything I read about eye

> twitching sounds like it is stress and not a big deal -

> anyone have any experience with this? Also,if anyone knows

> exercises to help with equalibrium issues please pass them

> my way.

>

December 19, 2008

Pam,

The cold weather is affecting me - it is causing nasal drippage - which connects the ear-nose-throat - then leads to equalibrium issues (yuk!). Since surgery my face/ear/equalibrium seems to be very hypersensitive to the weather. I am thinking about going to the allergist to get tested (figure it couldn't hurt to know what I may be allergic to). I hope that Masie is not getting TMJ - my mother-in-law had that for many years. Keep me posted to when Masie gets her second surgery. I am going to be thinking about the titanium prosthesis over the next year - I am saying no to it now. I am going to try a hearing aid first and see what I think. After reading others stories I then sit and wonder how long had my cholesteatoma been growing before discovered - wonder if it was really years? Seems like with young children they grow so fast or is it

because it wasn't all removed or couldn't all be removed the first time from their little ears? And, I guess some children may be born with the cholesteatomas opposed to the eustachian tube dysfunction. Did your sister recover okay? Take care!

From: Pam Bankston <pamcrt2002@...>cholesteatoma Sent: Friday, December 19, 2008 8:24:54 PMSubject: Re: cholesteatoma/eye twitching

Hi ,I have no idea what to tell you!! I know we've talked about this before, but like you, I am at a loss... Masie has been complaining the last week, probably since we had the snow here last week, that her face (ctoma side) has been hurting really bad (may have been hurting before that but not quite as bad) and when we went to the doctor on the 16th, I told him about it and she pointed out the area and he seems to think the poor child is getting TMJ now. So I have no clue as to why some people get certain things along with ctomas and other get other things. It's really weird. I do hope someone has some insight for you and can give you some info... I know you sure are tired of dealing with the imbalance issues!PamPamela Waling "smile, it confuses people..."> From: Captain Definder <captaindefinder>> Subject: cholesteatoma/ eye twitching> cholesteatoma> Date: Friday, December 19, 2008, 7:54 PM> Hi Everyone,> > At the beginning of my cholesteatoma journey this year I> started with bell's palsy first then 6 months later> discovered the cholesteatoma which the doctor said> contributed to the bell's palsy. The bell's palsy> cleared up after about 3 months (thank goodness) - however,> this past week I have severe eye twitching on

my bell's> palsy/cholesteatoma side. Everything I read about eye> twitching sounds like it is stress and not a big deal -> anyone have any experience with this? Also,if anyone knows> exercises to help with equalibrium issues please pass them> my way.> >

December 20, 2008

I have had several surgeries in the past 6 years for Ctoma’s.

I am not the norm. I once had a Ctoma come back in 3 months. For me

the big problem has been my Eustachian tube being closed causing the eardrum to

retract. Once that would happen it would only be a matter of time before

I would have another Ctoma. The moisture in my middle ear had no place to

go. As of my last surgery almost 2 years ago the Otologist put a tube in

my ear. I have now gone almost 2 years without a surgery.

When my first Ctoma was discovered I was seeing a different

Dr. He believed that I had had it for a long time. It seems that no two

people are the same.

I need to use FLonase every morning to help with nasal issues. That

has helped me a lot.

Ingrid

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of Captain Definder

Sent: Friday, December 19, 2008 10:27 PM

cholesteatoma

Subject: Re: cholesteatoma/eye twitching

Pam,

The cold weather is affecting me - it is causing nasal

drippage - which connects the ear-nose-throat - then leads

to equalibrium issues (yuk!). Since surgery my face/ear/equalibrium seems

to be very hypersensitive to the weather. I am thinking about going to

the allergist to get tested (figure it couldn't hurt to know what I

may be allergic to). I hope that Masie is not getting TMJ - my

mother-in-law had that for many years. Keep me posted to when Masie gets

her second surgery. I am going to be thinking about the titanium

prosthesis over the next year - I am saying no to it now. I am going to

try a hearing aid first and see what I think. After reading

others stories I then sit and wonder how long had my cholesteatoma

been growing before discovered - wonder if it was really years? Seems

like with young children they grow so fast or is it because it wasn't all

removed or couldn't all be removed the first time from their little

ears? And, I guess some children may be born with the

cholesteatomas opposed to the eustachian tube dysfunction. Did your

sister recover okay? Take care!

From: Pam Bankston <pamcrt2002@...>

cholesteatoma

Sent: Friday, December 19, 2008 8:24:54 PM