Re: Cholesteatoma in the outer part of the ear

[Guest guest]

It is really sad and shocking to know about recurrnce.

I think she will need anothr surgery if recurrence is so big.

Arun

On 6/3/08, rosalbasg <rosalbasg@...> wrote:

Hello everyone. My 13 years old daughter had five surgery on her left ear from 2001 to2004, after her last surgery in 2004 (where apparently all thecholesteotoma was removed) she is been doing fine and didn't have any

problems until a month ago when her left ear started bleeding and Itook her to see an ENT. At this point the ENT prescribed some eardrops and antibiotics and during the treatment I noticed white piecesof dead skin coming out from her left ear that was easily removed with

a piece of cotton. After we were done with the ear drops andantibiotics we went back to see a children's specialist in Miami andhe was surprise to see the actual cholesteatoma coming out from herleft ear and immediately removed a considerable amount of

cholesteatoma at the office. He then prescribed more ear drops forthe next 2 weeks and we are hoping that the cholesteotoma will becompletly gone by then. We are also hoping she won't have to throughanother surgery. I don't know if anyone had a similar experience or

if anyone can help me understand this condition a little bit better.Thank you for your help.lba

[Guest guest]

he was surprise to see the actual cholesteatoma coming out from her

left ear and immediately removed a considerable amount of

cholesteatoma at the office. .

Hi lba

Does your daughter have an intact eardrum or is this ctoma located in the

ear canal itself?

Phil

[Guest guest]

Who is her surgeon in Miami???

Cholesteatoma in the outer part of the ear

Hello everyone. My 13 years old daughter had five surgery on her left ear from 2001 to2004, after her last surgery in 2004 (where apparently all thecholesteotoma was removed) she is been doing fine and didn't have anyproblems until a month ago when her left ear started bleeding and Itook her to see an ENT. At this point the ENT prescribed some eardrops and antibiotics and during the treatment I noticed white piecesof dead skin coming out from her left ear that was easily removed witha piece of cotton. After we were done with the ear drops andantibiotics we went back to see a children's specialist in Miami andhe was surprise to see the actual cholesteatoma coming out from herleft ear and immediately removed a considerable amount ofcholesteatoma at the office. He then prescribed more ear drops forthe next 2 weeks and we are hoping that the cholesteotoma will becompletly gone by then. We are also hoping she won't have to throughanother surgery. I don't know if anyone had a similar experience orif anyone can help me understand this condition a little bit better.Thank you for your help.lba

[Guest guest]

For-Phil

Please Phil stay in constant contact with ur ENT by regular follow up, and let him find out the extent of C-Toma.

Dr. Arun (ENT Surgeon-India)

On 6/3/08, Phil <pxmorris@...> wrote:

he was surprise to see the actual cholesteatoma coming out from herleft ear and immediately removed a considerable amount ofcholesteatoma at the office. .Hi lbaDoes your daughter have an intact eardrum or is this ctoma located in the

ear canal itself?Phil

[Guest guest]

I have a bleeding in my ear canal away from ear drum.

My ENT said it is ear infection, though it looks awful from the scope

(as show on " tv screen " ) - redness like cancer tumour.

How do we tell whether the infection is ctoma? What colour will it

appear in scope (i mean on the " tv screen " )?

For your info, my ear drum is not intact. Some ent said i hav ctoma,

some said no after the CT scan...frustrating.

Chew

> >

> >

> > he was surprise to see the actual cholesteatoma coming out from

her

> > left ear and immediately removed a considerable amount of

> > cholesteatoma at the office. .

> >

> > Hi lba

> >

> > Does your daughter have an intact eardrum or is this ctoma

located in the

> > ear canal itself?

> >

> > Phil

> >

> >

> >

>

[Guest guest]

How to know if it's a cholesteatoma?

My advice is to go and see a Neuro-Otologist. Blood coming out of the ear indicates to me you want to do this ASAP.

IMO self diagnosis is not a sensible approach here, and most ENT's don't have the necessary skills in this respect.

From: ww_chew <ww_chew@...>Subject: Re: Cholesteatoma in the outer part of the earcholesteatoma Date: Friday, June 6, 2008, 10:11 AM

I have a bleeding in my ear canal away from ear drum.My ENT said it is ear infection, though it looks awful from the scope (as show on "tv screen") - redness like cancer tumour.How do we tell whether the infection is ctoma? What colour will it appear in scope (i mean on the "tv screen")?For your info, my ear drum is not intact. Some ent said i hav ctoma, some said no after the CT scan...frustrating.Chew > >> >> > he was surprise to see the actual

cholesteatoma coming out from her> > left ear and immediately removed a considerable amount of> > cholesteatoma at the office. .> >> > Hi lba> >> > Does your daughter have an intact eardrum or is this ctoma located in the> > ear canal itself?> >> > Phil> >> > > >>

[Guest guest]

so true - go see a Neuro-Otologist ASAP and ask for a CT scan! You've

already been to ENT's so you should move on to the next level of

expertise as it sounds complicated - Best wishes Chew!!

daniel skempton wrote:

>

> How to know if it's a cholesteatoma?

>

>

>

> My advice is to go and see a Neuro-Otologist. Blood coming out of the

> ear indicates to me you want to do this ASAP.

>

>

>

> IMO self diagnosis is not a sensible approach here, and most ENT's

> don't have the necessary skills in this respect.

>

>

>

> From: ww_chew <ww_chew@...>

> Subject: Re: Cholesteatoma in the outer part of

> the ear

> cholesteatoma

> Date: Friday, June 6, 2008, 10:11 AM

>

> I have a bleeding in my ear canal away from ear drum.

> My ENT said it is ear infection, though it looks awful from the scope

> (as show on " tv screen " ) - redness like cancer tumour.

> How do we tell whether the infection is ctoma? What colour will it

> appear in scope (i mean on the " tv screen " )?

>

> For your info, my ear drum is not intact. Some ent said i hav ctoma,

> some said no after the CT scan...frustrating.

>

> Chew

>

>

> > >

> > >

> > > he was surprise to see the actual cholesteatoma coming out from

> her

> > > left ear and immediately removed a considerable amount of

> > > cholesteatoma at the office. .

> > >

> > > Hi lba

> > >

> > > Does your daughter have an intact eardrum or is this ctoma

> located in the

> > > ear canal itself?

> > >

> > > Phil

> > >

> > >

> > >

> >

>

>

[Guest guest]

This is the first time i heard about " Neuro-Otologist " .

I tot ENT will do most of the tricks of ctoma.

Which department shall NO attach to? I really have no idea and i dont

think that hospital has such NO...

Chew

[Guest guest]

I was glad to find this group and would like to share my story:

Past Ear History: One severe right ear infection with a myringotomy (sp?) to release pressure 20 years ago and ruptured TM 13 years ago scuba diving.

Two years ago began with pain and pressure in right ear, back and forth to ENT for about 6 months with a dx of otitis media and had a myringotmy which did not help. ENT referred to a specialist who diagnosed an attic cholesteatoma which had slightly eroded into the bony plate between the middle ear and scull but no erosion of the ear bones. (CT scan had only shown a tiny sliver of skin.) A canal wall up tympanomastoidectomy with removal of the cholesteatoma and a graft to repair the attic defect followed with no problems until last month.

Ear pain/facial pain/pressure/and fullness were my presenting symtoms last month and CT scan only showed some possible very slight c-toma high in the middle ear (the radiologist did not note this on report but my surgeon saw it plus some white tissue on the back side of the TM through the otoscope.) Yesterday, had a revision tympanomastoidectomy and when they got in there, there was c-toma throughout the entire middle ear that had eroded two of the ear bones and was twisting and growing all over. Instead of the hour and a half surgery they had anticipated, it took 6 hours to remove the c-toma, reconstuct the ear bones using prosthetics for two of the bones. The surgeon stated it was one of the worst c-tomas that he had seen. However, surgery went well and I am home but will have to have surgery again in six months to make sure it is not growing back. The surgeon stated he created a kind of hinge for the ear bones so that he will not have to reconstruct the next time but just flip them up to look behind.

What I want to share that I think is unusual is that I have never had ear drainage as a presenting symptom - my initial symptom in both cases was severe pain (ear and facial) and fullness and then later some dizziness. CT scans did not enhance the majority of the c-toma.

Sooo, if you are having problems, be very persistent and realize that CT scans do not always tell the story. If I had not kept pestering and making sure they knew how much pain I was in so that I could be seen quickly, the outcome may not have been as positive.

Thanks,

Pat

> >> >> > he was surprise to see the actual cholesteatoma coming out from her> > left ear and immediately removed a considerable amount of> > cholesteatoma at the office. .> >> > Hi lba> >> > Does your daughter have an intact eardrum or is this ctoma located in the> > ear canal itself?> >> > Phil> >> > > >>

[Guest guest]

I would agree. My very well experienced neurotologist was still

surprised by the extent of the cholesteatoma during my first surgery.

Half way through he took a quick break to tell my wife that all was

well, but that he had to go slowly and do a bunch of work. The scans

are typically only for detection - my doctor was careful to point out

that he'd know more when he was actually working on me.

Matt

patandstevematt wrote:

>

> I was glad to find this group and would like to share my story:

>

> Past Ear History: One severe right ear infection with a myringotomy

> (sp?) to release pressure 20 years ago and ruptured TM 13 years ago

> scuba diving.

>

> Two years ago began with pain and pressure in right ear, back and

> forth to ENT for about 6 months with a dx of otitis media and had a

> myringotmy which did not help. ENT referred to a specialist who

> diagnosed an attic cholesteatoma which had slightly eroded into the

> bony plate between the middle ear and scull but no erosion of the ear

> bones. (CT scan had only shown a tiny sliver of skin.) A canal wall up

> tympanomastoidectomy with removal of the cholesteatoma and a graft to

> repair the attic defect followed with no problems until last month.

>

> Ear pain/facial pain/pressure/and fullness were my presenting symtoms

> last month and CT scan only showed some possible very slight c-toma

> high in the middle ear (the radiologist did not note this on

> report but my surgeon saw it plus some white tissue on the back side

> of the TM through the otoscope.) Yesterday, had a revision

> tympanomastoidectomy and when they got in there, there was c-toma

> throughout the entire middle ear that had eroded two of the ear bones

> and was twisting and growing all over. *Instead of the hour and a half

> surgery they had anticipated, it took 6 hours to remove the c-toma,

> reconstuct the ear bones using prosthetics for two of the bones*. The

> surgeon stated it was one of the worst c-tomas that he had seen.

> However, surgery went well and I am home but will have to have surgery

> again in six months to make sure it is not growing back. The surgeon

> stated he created a kind of hinge for the ear bones so that he will

> not have to reconstruct the next time but just flip them up to look

> behind.

>

> *What I want to share that I think is unusual is that I have never had

> ear drainage as a presenting symptom - my initial symptom in both

> cases was severe pain (ear and facial) and fullness and then later

> some dizziness. CT scans did not enhance the majority of the c-toma.*

>

> Sooo, if you are having problems, *be very persistent and realize that

> CT scans do not always tell the story.* If I had not kept pestering

> and making sure they knew how much pain I was in so that I could be

> seen quickly, the outcome may not have been as positive.

>

> Thanks,

>

> Pat

>

>

>

>

>

> > >

> > >

> > > he was surprise to see the actual cholesteatoma coming out from her

> > > left ear and immediately removed a considerable amount of

> > > cholesteatoma at the office. .

> > >

> > > Hi lba

> > >

> > > Does your daughter have an intact eardrum or is this ctoma located

> in the

> > > ear canal itself?

> > >

> > > Phil

> > >

> > >

> > >

> >

>

>

--

[Guest guest]

Very interesting past ear history matt. I am in the middle of ear problem

diagnosis now that appear to be a cholesteatoma and I am just wondering what

is meant by your " fullness " symptom. Thanks for your time. jack

-----Original Message-----

From: cholesteatoma [mailto:cholesteatoma ]

On Behalf Of

[Guest guest]

I am just wondering what is meant by your " fullness " symptom.

Hello Jack

It's sort of self-descriptive meaning there a noticable feeling of pressure

inside your ear. That might happen because there actually is something in

there such as fluid build-up or ctoma or conversely it could mean there is

literally nothing in there (as in a vacuum). Negative pressure inside the

middle ear also feels like " fullness " .

Phil

[Guest guest]

Jack,

I think that was Pat's description, but I had what I'd consider a

'fullness' feeling in the ear for some time before I was diagnosed

correctly. I heard a lot of doctors say " That's a nasty infection.

Here's a prescription for antibiotics ... you'll feel better soon. " All

along it was something more than just an infection. The hearing had to

go first. I was lucky at that point. I was referred to an ENT who

happened to have a specialty in nasal issues. She worked in an office

suite with my neurotologist. She looked at me for about 5 minutes and

then went and got him. He took about 5 seconds and simply said 'yup.'

Matt

jack mccamy wrote:

>

> Very interesting past ear history matt. I am in the middle of ear problem

> diagnosis now that appear to be a cholesteatoma and I am just

> wondering what

> is meant by your " fullness " symptom. Thanks for your time. jack

>

> -----Original Message-----

> From: cholesteatoma

> <mailto:cholesteatoma%40>

> [mailto:cholesteatoma

> <mailto:cholesteatoma%40>]

> On Behalf Of