Re: Mastoidectomy - Residual Cholesteatoma

[Guest guest]

Hi Boopi>> Since I have been home, I have been googling the term 'residual cholesteatoma' and everything I have read has lead me to believe that the c'toma just removed could've been a result of c'toma left behind from my first op. So this would mean I have had this thing 'growing' in my mastoid for 15 years?! Is this possible?? << I had constant problems (ear infections, perforations, discharge, pain, hearing loss & pressure in and behind the ear – you name it, I had the symptoms) for 16+ years (around 1983 to 1999), until I was referred to a Specialist who diagnosed Cholesteatoma. He arranged for me to have a CT scan in an effort to confirm the diagnosis, and then operated to remove it (in 1999). I don’t think CT scans were invented back in the 80s, and as is often the case, I didn’t have all of the symptoms, all of the time, which made diagnosis difficult, I guess. So, to answer your question, yes it is sadly very possible your Cholesteatoma was growing for 15 years. Hope you’re soon feeling better! Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of boopi136Sent: 18 January 2011 17:51cholesteatoma Subject: Mastoidectomy - Residual Cholesteatoma Four days ago I had a canal wall down mastoidectomy to remove a cholesteatoma from my mastoid.The surgery lasted 5 hours which I think was more complicated than anyone predicted.I am recovering well, still a little sore and sick of the dressings but it's been easier than expected. I have lost the taste on one side of my tongue though which is rather strange.Following my surgery I was told that my cholesteatoma was 'a residual cholesteatoma.' Can anyone explain what that term means?To give a little history, I had my last cholesteatoma/mastoid surgery 15 years ago and have only experienced c'toma type symptoms for the last 2 years. Otherwise my ear has been dry and relatively trouble free.Since I have been home, I have been googling the term 'residual cholesteatoma' and everything I have read has lead me to believe that the c'toma just removed could've been a result of c'toma left behind from my first op. So this would mean I have had this thing 'growing' in my mastoid for 15 years?! Is this possible??If Anyone can shed a little light on this, that would be great. Thank you.

[Guest guest]

Hi Kazzy,

I had a chat with my doc before surgery and he thinks CT scans are around 5

years behind being able to reliably confirm c'toma diagnosis so it just goes to

show how tricky it can be to sometimes.

I am fortunate to be relatively symptom free - whereas it sounds like you went

through it all before eventually (16 years woah!) being diagnosed.

I am only 24 so the idea of having this thing for so long is crazy to me, in

fact I can't quite get my head around it.

Thank you!

>

> Hi Boopi

>

> >> Since I have been home, I have been googling the term 'residual

> cholesteatoma' and everything I have read has lead me to believe that the

c'toma

> just removed could've been a result of c'toma left behind from my first op. So

> this would mean I have had this thing 'growing' in my mastoid for 15 years?!

Is

> this possible?? <<

>

>

>

> I had constant problems (ear infections, perforations, discharge, pain,

hearing

> loss & pressure in and behind the ear - you name it, I had the symptoms) for

16+

> years (around 1983 to 1999), until I was referred to a Specialist who

diagnosed

> Cholesteatoma. He arranged for me to have a CT scan in an effort to confirm

the

> diagnosis, and then operated to remove it (in 1999). I don't think CT scans

> were invented back in the 80s, and as is often the case, I didn't have all of

> the symptoms, all of the time, which made diagnosis difficult, I guess.

>

>

>

> So, to answer your question, yes it is sadly very possible your Cholesteatoma

> was growing for 15 years.

>

>

>

> Hope you're soon feeling better!

>

>

>

> Kazzy

>

>

>

>

>

>

>

> From: cholesteatoma [mailto:cholesteatoma ] On

> Behalf Of boopi136

> Sent: 18 January 2011 17:51

> cholesteatoma

> Subject: Mastoidectomy - Residual Cholesteatoma

>

>

>

>

>

> Four days ago I had a canal wall down mastoidectomy to remove a cholesteatoma

> from my mastoid.

> The surgery lasted 5 hours which I think was more complicated than anyone

> predicted.

> I am recovering well, still a little sore and sick of the dressings but it's

> been easier than expected. I have lost the taste on one side of my tongue

though

> which is rather strange.

> Following my surgery I was told that my cholesteatoma was 'a residual

> cholesteatoma.' Can anyone explain what that term means?

> To give a little history, I had my last cholesteatoma/mastoid surgery 15 years

> ago and have only experienced c'toma type symptoms for the last 2 years.

> Otherwise my ear has been dry and relatively trouble free.

> Since I have been home, I have been googling the term 'residual cholesteatoma'

> and everything I have read has lead me to believe that the c'toma just removed

> could've been a result of c'toma left behind from my first op. So this would

> mean I have had this thing 'growing' in my mastoid for 15 years?! Is this

> possible??

> If Anyone can shed a little light on this, that would be great. Thank you.

>

[Guest guest]

It can not be residual c-tome,but a recurence, other wise u could not

have been symptoms free for 13 yrs

Dr. Arun Gupta, ENT Surgeon,Indi

On 1/18/11, boopi136 <boopi136@...> wrote:

> Four days ago I had a canal wall down mastoidectomy to remove a

> cholesteatoma from my mastoid.

> The surgery lasted 5 hours which I think was more complicated than anyone

> predicted.

> I am recovering well, still a little sore and sick of the dressings but it's

> been easier than expected. I have lost the taste on one side of my tongue

> though which is rather strange.

> Following my surgery I was told that my cholesteatoma was 'a residual

> cholesteatoma.' Can anyone explain what that term means?

> To give a little history, I had my last cholesteatoma/mastoid surgery 15

> years ago and have only experienced c'toma type symptoms for the last 2

> years. Otherwise my ear has been dry and relatively trouble free.

> Since I have been home, I have been googling the term 'residual

> cholesteatoma' and everything I have read has lead me to believe that the

> c'toma just removed could've been a result of c'toma left behind from my

> first op. So this would mean I have had this thing 'growing' in my mastoid

> for 15 years?! Is this possible??

> If Anyone can shed a little light on this, that would be great. Thank you.

>

>

>

[Guest guest]

I have read so many times about surgeries turning out to be more extensive than

expected. The scan is as some have pointed out not enough to get a good idea

what it looks like inside there. Only a surgery can give a right picture of the

situation. Most people are having a 3-5 hour surgery.

It sounds like you are doing good.

Good luck with getting well!