Re: Big ear hole - question

[Guest guest]

Hi Ann

It's like somebody left the window isn't it? One doctor advised me wear cottonwool in the ear during cold and windy weather as it can start to affect balance if it gets too cool. I've been wearing a hat throughout the winters over the past few years though.

Philalmost a month post op. am back to normal and feeling just fine - no problems - back working same as always. one question - when i got the packing out, the ear hole was filled with cream but i think that most of that now has drained out. i was out in town for lunch today and it was windy - such a strange feeling. what i want to know is it ok to walk around with no protection - felt like the wind was going straight through my head. docs never said anything !!thanksann.

[Guest guest]

The whole is only part of the problem, although it is not as noticeable as the removal of bone behind the ear which results in an overall unsymetric look. Watch Comedy Centrals "Daily Show". Look at the guy on the show named Coulbert to see what I mean... (his right ear). If at all possible consider the CWU procedure.

Good Luck

[Guest guest]

Phil,

Great description - that's exactly what it feels like. Will definitely invest now in a few hats. And i live on the west coast of ireland where wind / rain is fairly prevalent.

You have to be amazed at this condition - it does throw all kinds of funny things to cope with at you.

Hope you are feeling well. And thank you - you are a wonderful source of info.

ann. Phil <psmorris@...> wrote:

Hi Ann

It's like somebody left the window isn't it? One doctor advised me wear cottonwool in the ear during cold and windy weather as it can start to affect balance if it gets too cool. I've been wearing a hat throughout the winters over the past few years though.

Philalmost a month post op. am back to normal and feeling just fine - no problems - back working same as always. one question - when i got the packing out, the ear hole was filled with cream but i think that most of that now has drained out. i was out in town for lunch today and it was windy - such a strange feeling. what i want to know is it ok to walk around with no protection - felt like the wind was going straight through my head. docs never said anything !!thanksann.

[Guest guest]

I have a huge hole and an open mastoud bowl, I can't hardly walk at

all when the wind hits my ear. I always use protection any time I am

out doors in wind, rain snow. I advise you to keep your ear covered.

Makes a world of difference. I also use cotton balls and vasaline

every time I wash my hair, I faithfully protect my ear from water, so

hope this helps you!

> hi all,

>

> almost a month post op. am back to normal and feeling just fine -

no

> problems - back working same as always. one question - when i got

> the packing out, the ear hole was filled with cream but i think

that

> most of that now has drained out. i was out in town for lunch today

> and it was windy - such a strange feeling. what i want to know is

it

> ok to walk around with no protection - felt like the wind was going

> straight through my head. docs never said anything !!

>

> thanks

>

> ann.

[Guest guest]

I am wondering, is a larger ear hole associated with the canal wall

down procedure, or does that occur with either? How obvious is it,

or does it depend on what what is done? Sorry if these are rookie

questions, but i never really thought about a difference in

appearance after surgery.

Thanks,

Darin

> hi all,

>

> almost a month post op. am back to normal and feeling just fine -

no

> problems - back working same as always. one question - when i got

> the packing out, the ear hole was filled with cream but i think

that

> most of that now has drained out. i was out in town for lunch today

> and it was windy - such a strange feeling. what i want to know is

it

> ok to walk around with no protection - felt like the wind was going

> straight through my head. docs never said anything !!

>

> thanks

>

> ann.

I am wondering, is a larger ear hole associated with the canal wall

down procedure, or does that occur with either? How obvious is it,

or does it depend on what what is done? Sorry if these are rookie

questions, but i never really thought about a difference in

appearance after surgery.

Thanks,

Darin

[Guest guest]

Dear Phil, iam new to this site and from what I've been reading from the group letters tell me you are very knowledgable about c-tomas and all that comes along with it. i've read all the info that everyone has been giving (and its great!) But I have yet to here anything about pressure---is this unusual? I feel at times my head will pop right off. The pain stops me in my tracks! I live up in the mountians and when a storm comes in forget it --Iam down for the count! I had my c-tomas removed about 3 years ago, meatoplasty, reconstruction--the whole nine yards... Doctors just look do a CT or a MRI and slap some pain killers my way. At the rate Iam going I will be a full pledge junkie.. Any thoughts?

awaiting your reply........... na

[Guest guest]

Hello All,

I will share my experience with the Ctoma surgery. My surgery was done 13 years ago. My doctor set aside the whole day to focus on me and my surgery. He did not do another surgery or see any other patient that day. I received a complete report of what was done during the surgery. He used a wax bone and placed in the area where the mastoid was removed. ( It was full of the C-toma and had to be removed) the area is a little different but people do not notice. The ear hole is larger but, again, most people do not notice. The hearing bones (hammer, anvil etc) was destroyed. A part of my skull, the size of a dime, was eaten away by the ctoma ( did not penetrate the lining of the brain). The ctoma was in the part of the ear bones that control balance etc (can't remember the name at the moment starts with L I'm thinking). After the surgery I had extreme dizziness, when I woke up from surgery the room was spinning really fast. The spinning sensation slowed with each day. My balance was distrubed and I had to relearn how to do things. I guess the point I am trying to make is: we notice our difference much more than anyone else does. It is just part of who we are. You are all courageous and wonderful people and banding together to share only makes you (us) stronger.

Much love to all

Shirley

Re: Re: Big ear hole - question

The whole is only part of the problem, although it is not as noticeable as the removal of bone behind the ear which results in an overall unsymetric look. Watch Comedy Centrals "Daily Show". Look at the guy on the show named Coulbert to see what I mean... (his right ear). If at all possible consider the CWU procedure.

Good Luck

[Guest guest]

Hi Darin

I think what people are referring to is a surgery called meatoplasty (widening of the ear canal) which can be done in all sorts of situations but is especially associated with full radical mastoidectomy or open cavity surgery - there'd be a continuous space between the mastoid, middle ear and ear canal. The canal is widened to allow easier access for regular cleaning and to keep the space well ventilated. It would probably only slightly larger at mouth (the visible part) and open wider further. Not particularly noticable from the outside to anyone but yourself. You could ask the surgeon if a widening operation is planned - it may not be necessary.

Phil

Re: Big ear hole - question

I am wondering, is a larger ear hole associated with the canal wall down procedure, or does that occur with either? How obvious is it, or does it depend on what what is done? Sorry if these are rookie questions, but i never really thought about a difference in appearance after surgery.Thanks,Darin> hi all,> > almost a month post op. am back to normal and feeling just fine - no > problems - back working same as always. one question - when i got > the packing out, the ear hole was filled with cream but i think that > most of that now has drained out. i was out in town for lunch today > and it was windy - such a strange feeling. what i want to know is it > ok to walk around with no protection - felt like the wind was going > straight through my head. docs never said anything !!> > thanks> > ann.I am wondering, is a larger ear hole associated with the canal wall down procedure, or does that occur with either? How obvious is it, or does it depend on what what is done? Sorry if these are rookie questions, but i never really thought about a difference in appearance after surgery.Thanks,Darin

[Guest guest]

Hi Shirley

That would be L for labyrinth, I assume. It's part of the inner ear and separated from the middle ear by a thin bony plate. When this bone gets eroded it causes longer term balance problems and loss of co-ordination. Like you, I remember the full-on vertigo dissipated before long (that's the brain trying to compensate for the missing balance information) but then I was still generally off-balance and veering to one side so I had to practice walking etc. It took about 6 months to get back normal.

Phil

Hello All,

I will share my experience with the Ctoma surgery. My surgery was done 13 years ago. My doctor set aside the whole day to focus on me and my surgery. He did not do another surgery or see any other patient that day. I received a complete report of what was done during the surgery. He used a wax bone and placed in the area where the mastoid was removed. ( It was full of the C-toma and had to be removed) the area is a little different but people do not notice. The ear hole is larger but, again, most people do not notice. The hearing bones (hammer, anvil etc) was destroyed. A part of my skull, the size of a dime, was eaten away by the ctoma ( did not penetrate the lining of the brain). The ctoma was in the part of the ear bones that control balance etc (can't remember the name at the moment starts with L I'm thinking). After the surgery I had extreme dizziness, when I woke up from surgery the room was spinning really fast. The spinning sensation slowed with each day. My balance was distrubed and I had to relearn how to do things. I guess the point I am trying to make is: we notice our difference much more than anyone else does. It is just part of who we are. You are all courageous and wonderful people and banding together to share only makes you (us) stronger.

Much love to all

[Guest guest]

Hi Ann

I tell you them hats with the ear flaps are great..I had a few of

them before I gained a big ear hole...They aint half come in

useful..I might look like a garden gnome and get laughed at at work

but I don't care!!! Hope you're doing fine

In cholesteatoma , ann <ann_stargazer@y...> wrote:

> Phil,

>

> Great description - that's exactly what it feels like. Will

definitely invest now in a few hats. And i live on the west coast of

ireland where wind / rain is fairly prevalent.

> You have to be amazed at this condition - it does throw all kinds

of funny things to cope with at you.

> Hope you are feeling well. And thank you - you are a wonderful

source of info.

>

> ann.

>

> Phil <psmorris@t...> wrote:

> Hi Ann

>

> It's like somebody left the window isn't it? One doctor advised me

wear cottonwool in the ear during cold and windy weather as it can

start to affect balance if it gets too cool. I've been wearing a hat

throughout the winters over the past few years though.

>

> Phil

>

> almost a month post op. am back to normal and feeling just fine -

no

> problems - back working same as always. one question - when i got

> the packing out, the ear hole was filled with cream but i think

that

> most of that now has drained out. i was out in town for lunch today

> and it was windy - such a strange feeling. what i want to know is

it

> ok to walk around with no protection - felt like the wind was going

> straight through my head. docs never said anything !!

>

> thanks

>

> ann.

>

>

>

>

>

>

[Guest guest]

Darin,

No one will notice unless they look directly into your ear. It's just a funny sensation when you are out in the wind. As Phil said on an earlier post, it's like the window been left open. When the wind blows in through my ear, i can feel it at the back of my throat.

don't worry - we all asked rookie questions. you should have seen mine a few months ago when i was first diagnosed. keep asking - someone always answers.

ann.Darin <dcdalton2320@...> wrote:

I am wondering, is a larger ear hole associated with the canal wall down procedure, or does that occur with either? How obvious is it, or does it depend on what what is done? Sorry if these are rookie questions, but i never really thought about a difference in appearance after surgery.Thanks,Darin> hi all,> > almost a month post op. am back to normal and feeling just fine - no > problems - back working same as always. one question - when i got > the packing out, the ear hole was filled with cream but i think that > most of that now has drained out. i was out in town for lunch today > and it was windy - such a strange feeling. what i want to know is it > ok to

walk around with no protection - felt like the wind was going > straight through my head. docs never said anything !!> > thanks> > ann.I am wondering, is a larger ear hole associated with the canal wall down procedure, or does that occur with either? How obvious is it, or does it depend on what what is done? Sorry if these are rookie questions, but i never really thought about a difference in appearance after surgery.Thanks,Darin

[Guest guest]

,

thanks for reply and thanks to everyone who did reply. I'm feeling fine - back to my normal self (tinnitus and all). hope you are doing ok. definitely a shopping trip for hats tommorrow.

ann.

melanie <melanie_haves@...> wrote:

Hi AnnI tell you them hats with the ear flaps are great..I had a few of them before I gained a big ear hole...They aint half come in useful..I might look like a garden gnome and get laughed at at work but I don't care!!! Hope you're doing fineIn cholesteatoma , ann <ann_stargazer@y...> wrote:> Phil,> > Great description - that's exactly what it feels like. Will definitely invest now in a few hats. And i live on the west coast of ireland where wind / rain is fairly prevalent. > You have to be amazed at this condition - it does throw all kinds of funny things to cope with at you. > Hope you are feeling well. And thank you - you are a wonderful source of info.> > ann. > > Phil

<psmorris@t...> wrote:> Hi Ann> > It's like somebody left the window isn't it? One doctor advised me wear cottonwool in the ear during cold and windy weather as it can start to affect balance if it gets too cool. I've been wearing a hat throughout the winters over the past few years though.> > Phil> > almost a month post op. am back to normal and feeling just fine - no > problems - back working same as always. one question - when i got > the packing out, the ear hole was filled with cream but i think that > most of that now has drained out. i was out in town for lunch today > and it was windy - such a strange feeling. what i want to know is it > ok to walk around with no protection - felt like the wind was going > straight through my head. docs never said anything !!> > thanks> > ann.> >

> > > >

[Guest guest]

24 years after my CWD I still can have a bout with

lite headeness, or dizzieness depending on how youy

look at it....

tom hansen

--- Mojomom <mojomom@...> wrote:

> Hello All,

> I will share my experience with the Ctoma surgery.

> My surgery was done 13 years ago. My doctor set

> aside the whole day to focus on me and my surgery.

> He did not do another surgery or see any other

> patient that day. I received a complete report of

> what was done during the surgery. He used a wax

> bone and placed in the area where the mastoid was

> removed. ( It was full of the C-toma and had to be

> removed) the area is a little different but people

> do not notice. The ear hole is larger but, again,

> most people do not notice. The hearing bones

> (hammer, anvil etc) was destroyed. A part of my

> skull, the size of a dime, was eaten away by the

> ctoma ( did not penetrate the lining of the brain).

> The ctoma was in the part of the ear bones that

> control balance etc (can't remember the name at the

> moment starts with L I'm thinking). After the

> surgery I had extreme dizziness, when I woke up from

> surgery the room was spinning really fast. The

> spinning sensation slowed with each day. My balance

> was distrubed and I had to relearn how to do things.

> I guess the point I am trying to make is: we notice

> our difference much more than anyone else does. It

> is just part of who we are. You are all courageous

> and wonderful people and banding together to share

> only makes you (us) stronger.

>

> Much love to all

> Shirley

> Re: Re: Big ear hole -

> question

>

>

> The whole is only part of the problem, although it

> is not as noticeable as the removal of bone behind

> the ear which results in an overall unsymetric look.

> Watch Comedy Centrals " Daily Show " . Look at the guy

> on the show named Coulbert to see what I

> mean... (his right ear). If at all possible

> consider the CWU procedure.

>

> Good Luck

>

>