Re: Cholesteatoma Again? How to know if it may grow back?

[Guest guest]

Hi,

Welcome to the group. Yes, cholesteatoma can recur and can be symptomless, atleast in the beginning. I am surprised you have active cholesteatoma growing in one your ears and your doctor hasn't considered removing it. The only known treatment for cholesteatoma is surgery, and the longer cholesteatoma is in your ear, the more damage it will do. It can lead to brain abcess, meningitis, and in rare cases can be fatal.

I wouldn't rush off to the ER, they would probably treat you for an ear infection and tell you to follow up. First thing Monday, I would call your ENT for a checkup. I know having surgery is a very unpleasant thought, but for most of us here, we feel we don't have a choice.

Please keep us posted and again, welcome to the group.

Michele

axf9817 <axf9817@...> wrote:

I have had the removal Novemeber of last year. Now a year later I am started to get some of the classic symptoms back. It was triggered by an attack of sinusitis. Anyone ever have one grow back? How would I know? Would it do me any good to go the the ER about it since it is a weekend. I am terrified of going into surgery again. Please I need someone to talk to. I have cholesteatoma in my other ear also but since it is not giving me any trouble they have not messed with it yet. Please RSVP. I don't know what to do.

[Guest guest]

They are going to eventually have to do surgery on my other ear but

considering my hearing and the fact that they have not done any

reconstructive surgery on my first ear they are waiting it out since

there are no immediate symptoms. I am a mommy of a 4yr and 2yr old

and in college full time. So I need my hearing very much at this

point. Plus trying to do surgery in the middle of a school semester

of college can be rough on the grades. Thank you all so much for

writing back so quickly. It's nice to have someone to share this

with. Talk to you all soon. By the way I am on the Mississippi

Gulf Coast and I used the University of Southern MS as my hospital

for the surgery. It is a four hour drive from my house. Yuck.

Then trying to find sitters for the kids and so on and so forth.

It's not just the surgery. I can't stop thinking about the outside

world while I am going under. And coming out of surgery....That was

the worst feeling of all. I actually had to remind myself to take a

breath......Ehhh....Scary>Anyone else feel this way after surgery?

I have had the removal Novemeber of

last year. Now a year later I

> am started to get some of the classic symptoms back. It was

> triggered by an attack of sinusitis. Anyone ever have one grow

> back? How would I know? Would it do me any good to go the the ER

> about it since it is a weekend. I am terrified of going into

> surgery again. Please I need someone to talk to. I have

> cholesteatoma in my other ear also but since it is not giving me

any

> trouble they have not messed with it yet. Please RSVP. I don't

> know what to do.

>

>

>

>

[Guest guest]

Hi,

I'm sorry to say that C-toma's can grow back. It is acutally very common for

them to grow back. As for not doing anything about the other ear because

you have no symptoms. That doesn't mean it isn't doing any damage. It can

destroy the bone between ear and brain without any symptoms and by the time

you have symptoms the problems are serious. I understand not wanting to

have surgery, no one likes it or wants it but the C-toma is a nasty bugger

and surgery is the only way to take care of it.

We're pulling for you!

Jane

>From: " axf9817 " <axf9817@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Cholesteatoma Again? How to know if it may grow

>back?

>Date: Fri, 29 Nov 2002 22:10:24 -0000

>

>I have had the removal Novemeber of last year. Now a year later I

>am started to get some of the classic symptoms back. It was

>triggered by an attack of sinusitis. Anyone ever have one grow

>back? How would I know? Would it do me any good to go the the ER

>about it since it is a weekend. I am terrified of going into

>surgery again. Please I need someone to talk to. I have

>cholesteatoma in my other ear also but since it is not giving me any

>trouble they have not messed with it yet. Please RSVP. I don't

>know what to do.

>

>

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[Guest guest]

Hi Alyssa

Thank you so much for this great news!!!!!

My son will have surgery in a week. He is 17 months old and I am hoping the same happens with him!!!!! No reocurance!!!!

Ana

[Guest guest]

Undapte on possible regrowth. Doc says my symptoms could just be

fluid behind my ear. Yippee!!! Going to do a cat scan on monday.

> Hi Alyssa

> Thank you so much for this great news!!!!!

> My son will have surgery in a week. He is 17 months old and I am

hoping the

> same happens with him!!!!! No reocurance!!!!

> Ana

[Guest guest]

Here we hear a lot about the reocurrences, but thestats say less than 10% (I think) will recur..

The incidence of recurrent cholesteatoma was noted in 41% of the patients having intact canal wall mastoidectomy compared with 12% recidivism in those having a canal wall down procedure(CWD v CWU)During follow-up of canal wall down mastoidectomy (CWDM) for acquired cholesteatoma, 21% of patients had undergone one revision operation and 3% two revisions. The recurrence rate of cholesteatoma was 17% and in 4% the cholesteatoma recurred twice.(CWD specific)

Hi Lynn

A couple of extracts I've posted before concerning surveys on c-toma recurrence. No way of telling if the figures are universally accurate but to me they seemed like plausible statistics.

Best Wishes

Phil

[Guest guest]

Thanks Phil,

Those stats seem a lot higher than I thought. It is very interesting. That is almost 2 of 10 seem to recur, depending on the procedure. I have to add that I was speaking about CWD, and should have been more specific, because there is far less recurrence with that procedure.

On another note, this might be a good question for you. I have always been a little clumsy, but lately I find myself walking into the edge of doorways etc... I have no dizzyness or anything like that, but I seem to be doing this more often lately. I find it a little embarassing. I wonder if I am trying to do things without thinking about where I am going, or if my balance is off somewhat... I also notice sometimes some slight dizzyness when lying down with my eyes shut, but it only happens when I am lying on my back with my head raised a bit. I am concerned that this has something to do with my ear, and certainly hope it is just my clumsiness returning.

Lynn

Re: Cholesteatoma Again? How to know if it may grow back?

Here we hear a lot about the reocurrences, but thestats say less than 10% (I think) will recur..

The incidence of recurrent cholesteatoma was noted in 41% of the patients having intact canal wall mastoidectomy compared with 12% recidivism in those having a canal wall down procedure(CWD v CWU)During follow-up of canal wall down mastoidectomy (CWDM) for acquired cholesteatoma, 21% of patients had undergone one revision operation and 3% two revisions. The recurrence rate of cholesteatoma was 17% and in 4% the cholesteatoma recurred twice.(CWD specific)

Hi Lynn

A couple of extracts I've posted before concerning surveys on c-toma recurrence. No way of telling if the figures are universally accurate but to me they seemed like plausible statistics.

Best Wishes

Phil

[Guest guest]

Lynn;

I have always had poor balance and dizzyness. It was attributed to

a childhood accident that left me deaf in one ear. I had adjusted

to somewhat. Since my CWD in that ear, I seem to be having a little

more trouble with both. I am sure it is because of the changes from

the surgery. I think you should check with your doctor.

tom

> On another note, this might be a good question for you. I

have always been a little clumsy, but lately I find myself walking

into the edge of doorways etc... I have no dizzyness or anything

like that, but I seem to be doing this more often lately. I find it

a little embarassing. I wonder if I am trying to do things without

thinking about where I am going, or if my balance is off somewhat...

I also notice sometimes some slight dizzyness when lying down with

my eyes shut, but it only happens when I am lying on my back with my

head raised a bit. I am concerned that this has something to do

with my ear, and certainly hope it is just my clumsiness

returning.

> Lynn

>

>

>

[Guest guest]

Hi Tom,

It is interesting that you had an accident which left you hearing impaired in

the same ear that you developed c-toma. Was you ear drum ruptured at the time

of the accident.

Thank you for you input, maybe I come by this clumsiness quite honestly... LOL,

it is still embarassing to walk into things though.

Lynn

>

> From: " Tom " <meekidog@...>

> Date: 2002/12/04 Wed AM 08:29:55 EST

> cholesteatoma

> Subject: Re: Cholesteatoma Again? How to know if it may grow

back?

>

> Lynn;

> I have always had poor balance and dizzyness. It was attributed to

> a childhood accident that left me deaf in one ear. I had adjusted

> to somewhat. Since my CWD in that ear, I seem to be having a little

> more trouble with both. I am sure it is because of the changes from

> the surgery. I think you should check with your doctor.

> tom

>

>

> > On another note, this might be a good question for you. I

> have always been a little clumsy, but lately I find myself walking

> into the edge of doorways etc... I have no dizzyness or anything

> like that, but I seem to be doing this more often lately. I find it

> a little embarassing. I wonder if I am trying to do things without

> thinking about where I am going, or if my balance is off somewhat...

> I also notice sometimes some slight dizzyness when lying down with

> my eyes shut, but it only happens when I am lying on my back with my

> head raised a bit. I am concerned that this has something to do

> with my ear, and certainly hope it is just my clumsiness

> returning.

> > Lynn

> >

>

> >

> >

[Guest guest]

I have always been a little clumsy, but lately I find myself walking into the edge of doorways etc...

Hi Lynn

Well I do this all the time nowadays - bump into door jambs, tables and trip over the edge of carpets - not so much dizzy but often accompanied by an odd sensation in my head and made worse when I'm a little tired and lose concentration. I experienced more acute balance problems immediately before and after surgery which took a few months to resolve. It's interesting that it is always connected with judging space while moving, I don't have no trouble doing the kind of yoga exercises where you stand on one leg etc. A couple of surgeons have told me that an open cavity ear will mean that the balance deteriorates during cold weather (temperature affects the vestibular region). Bad in winter, good in summer certainly seems to fit my experience - It's December so I don't venture out without the woollen hat. What's the temperature in Ontario this time of year?

Phil

[Guest guest]

Hi Phil, Does it affect your driving?

Hi

Sorry, I can't answer that. I haven't driven in years, partly because I don't like driving and mostly because I live near the centre of a gridlocked city (London) where a car is practically useless on a daily basis and parking impossible. I did used to cycle to work everyday but stopped when I first began to have dizzy spells before the c-toma surgery. I haven't yet felt safe enough to take it up again. It's pretty hazardous to ride around here even if you are 100% balanced.

Phil

[Guest guest]

Lynn-

I have to agree with Phil. I have a radical mastoid cavity (so also

an open cavity). While I don't have tons of problems day to day, I do

have some where I used to have none. I live in Colorado and am also

affected by the weather. The colder it is the worse it is. Thank

goodness for a warm house.

-

The balance issue doesn't really effect my driving, but I do have a

tendency to get more car sick which isn't the greatest thing when

you're driving. It was only severe when my husband was driving and we

were on winding mountain roads.

Hope this helps both of you!

-

>

> I have always been a little clumsy, but lately I find myself

walking into the edge of doorways etc...

> Hi Lynn

>

> Well I do this all the time nowadays - bump into door jambs, tables

and trip over the edge of carpets - not so much dizzy but often

accompanied by an odd sensation in my head and made worse when I'm a

little tired and lose concentration. I experienced more acute balance

problems immediately before and after surgery which took a few months

to resolve. It's interesting that it is always connected with judging

space while moving, I don't have no trouble doing the kind of yoga

exercises where you stand on one leg etc. A couple of surgeons have

told me that an open cavity ear will mean that the balance

deteriorates during cold weather (temperature affects the vestibular

region). Bad in winter, good in summer certainly seems to fit my

experience - It's December so I don't venture out without the woollen

hat. What's the temperature in Ontario this time of year?

>

> Phil

[Guest guest]

Hi Phil,

I initially quickly read that post, then looked at 's response and reread

this post about the cold weather... it is very interesting, because it has been

cold here for the last couple of weeks. -15 to -25 celcius. But I am not

walking into things outside. I have no problems driving. I need a car as my

work is about a 20 minute drive from my home. A car is a necessity here as

public transportation in Sudbury is really lacking. I once had a dizzy spell

while driving soon after my surgery, and had to get off the road, but it hasn't

happened again. Thank goodness.

Lynn

>

> From: " Phil " <psmorris@...>

> Date: 2002/12/04 Wed PM 02:07:49 EST

> <cholesteatoma >

> Subject: Re: Cholesteatoma Again? How to know if it may grow

back?

>

>

> I have always been a little clumsy, but lately I find myself walking into

the edge of doorways etc...

> Hi Lynn

>

> Well I do this all the time nowadays - bump into door jambs, tables and trip

over the edge of carpets - not so much dizzy but often accompanied by an odd

sensation in my head and made worse when I'm a little tired and lose

concentration. I experienced more acute balance problems immediately before and

after surgery which took a few months to resolve. It's interesting that it is

always connected with judging space while moving, I don't have no trouble doing

the kind of yoga exercises where you stand on one leg etc. A couple of surgeons

have told me that an open cavity ear will mean that the balance deteriorates

during cold weather (temperature affects the vestibular region). Bad in winter,

good in summer certainly seems to fit my experience - It's December so I don't

venture out without the woollen hat. What's the temperature in Ontario this time

of year?

>

> Phil

>

>

I have always been a little clumsy, but lately I find myself walking into the edge of doorways etc...

Hi Lynn

Well I do this all the time nowadays - bump into door jambs, tables and trip over the edge of carpets - not so much dizzy but often accompanied by an odd sensation in my head and made worse when I'm a little tired and lose concentration. I experienced more acute balance problems immediately before and after surgery which took a few months to resolve. It's interesting that it is always connected with judging space while moving, I don't have no trouble doing the kind of yoga exercises where you stand on one leg etc. A couple of surgeons have told me that an open cavity ear will mean that the balance deteriorates during cold weather (temperature affects the vestibular region). Bad in winter, good in summer certainly seems to fit my experience - It's December so I don't venture out without the woollen hat. What's the temperature in Ontario this time of year?

Phil

[Guest guest]

I have heard that c-toma can be a result of severe trauma to the ear................

Michele

lynnwit@... wrote:

Hi Tom,It is interesting that you had an accident which left you hearing impaired in the same ear that you developed c-toma. Was you ear drum ruptured at the time of the accident. Thank you for you input, maybe I come by this clumsiness quite honestly... LOL, it is still embarassing to walk into things though. Lynn> > From: "Tom" <meekidog@...>> Date: 2002/12/04 Wed AM 08:29:55 EST> cholesteatoma > Subject: Re: Cholesteatoma Again? How to know if it may grow back?> > Lynn;> I have always had poor balance and dizzyness. It was attributed to > a childhood accident that left me deaf in one ear. I had adjusted > to somewhat. Since my CWD in that ear, I seem to be having a little > more trouble with both. I am sure it is because of the changes from > the surgery. I think you should check with your doctor.> tom > > > > On another note, this might be a good question for you. I > have always been a little clumsy, but lately I find myself walking > into the edge of doorways etc... I have no dizzyness or anything > like that, but I seem to be doing this more often lately. I find it > a little embarassing. I wonder if I am trying to do things without > thinking about where I am going, or if my balance is off somewhat... > I also notice sometimes some slight dizzyness when lying down with > my eyes shut, but it only happens when I am lying on my back with my > head raised a bit. I am concerned that this has something to do > with my ear, and certainly hope it is just my clumsiness > returning. > > Lynn> > > > > > >

[Guest guest]

I don't think my ear drum was ruptured at the time I was kicked in

the head. But, that was 50+ years ago......

I ask three ENT's if the C'toma was related to the ear/head injury.

All three said something like " it could be, but, we'll never know "

tom

> >

> > > On another note, this might be a good question for you. I

> > have always been a little clumsy, but lately I find myself

walking

> > into the edge of doorways etc... I have no dizzyness or anything

> > like that, but I seem to be doing this more often lately. I

find it

> > a little embarassing. I wonder if I am trying to do things

without

> > thinking about where I am going, or if my balance is off

somewhat...

> > I also notice sometimes some slight dizzyness when lying down

with

> > my eyes shut, but it only happens when I am lying on my back

with my

> > head raised a bit. I am concerned that this has something to do

> > with my ear, and certainly hope it is just my clumsiness

> > returning.

> > > Lynn

> > >

> >

> > >

> > >

[Guest guest]

Thanks so much for the research on "pulse ear." This makes sense now. I have ETD (eustachian tube dysfunction) in my good ear causing me to have to pop it ALL THE TIME!!! I guess the only cure for this would be Prednisone (as I was told), AND I had the pulsating more when I was pregnant!! Makes sense since we have an increased amount of blood in our bodies during pregnancy. I'll just go with these theories since I don't like all the other ones :-)

Thanks again!

I.