Re: These things are not to be treated lightly!!

[Guest guest]

Gosh Sharon how Scary! I am both sorry that you have had to be so severely affected by this horrid condition, but also glad that yours was finally caught and dealt with.My son had c-tomas in both ears - suspected to be congenital. The right ear was the worst and his surgeon told me he had to expose his dura during his removal too. It's now 15 months since that op and we had a re-constructive surgery a few weeks ago and there is no sign of it returning, for which I was VERY grateful and relieved. In a way I was glad he was going back in to look and see what was going on in there. My biggest worry was that it was silently growing again! My son is 11 now and was 10 when he had his surgeries. He has 40-50% hearing in his right ear now, but that was a small sacrifice to be rid of the awful c-toma.

All the best for your recovery and thanks for sharing your story and giving us some perspective of just how bad it can get and dealing with it head on it always better than leaving it alone and hoping for the best.

Take care!JaneOn 27 July 2011 23:59, Sharyn Lodge <sharynlodge@...> wrote:

 

I've been reading all the stories on this site for 2-3 months now and have been searching for one similar to mine but havn't found one (except from one gentleman who very kindly replied to a query that I had about my symptoms).

I didn't present with the usual symptoms of pain and discharge - I had one symptom which started off as severe spasm on the right side of my face for about 3 weeks (lasted about 30 seconds and happened 4-5 times per day).  Things seemed to settle down for a month or so and then one morning when I was putting on my lipstick I noticed that my mouth wasn't opening properly on the right side.  This was the onset of right facial paralysis that at first was diagnosed as Bell's Palsy but, unlike Bell's Palsy, it got worse over the next several months instead of better.  This all started in May 2010 and by the time I hac an MRI in April 2011 the paralysis was affecting my right eye as well - it was getting very dry and I could no longer blink properly or close it.  The MRI showed a 'large and agressive' cholesteotoma' that had wrapped around most of the workings of my inner ear as well as over into the petrous apex, vestibule, stapes,

malleus, incus, cochlea, the bony covering of my facial nerve and had even started on my jaw bone!  A CT scan 1 week later helped to identify how extensive it was and I was finally booked in for an operation so fast my feet barely had time to touch the ground.

During the 8 and a half hour operation, my fantastic surgeon had to remove the alien piecemeal and had to go carefully over the dura but he thinks he may have got it all - yearly MRI's are the order of the day for me now.

I have been left with probably permanent facial paralysis and further operations on my face and eye to give me some symmetry are on the cards soon.  I have had a subtotal petrosectomy and blind sac closure so I no longer have any inner ear on the right side, in fact I carry what's left of my tiny incus and malleus in a locket round my neck - the stapes was gone.

So don't be reluctant for further checkups and 'look and see' ops - dont muck about with these things, they are lethal and can even kill if left alone because they will eat into the dura leaving the brain open to absesses and infection - mine was VERY close to doing this.

It's likely that mine also may have been growing for years, even since childhood - I had lots of ear infections up until just a few years ago and I am now 60 years old.  Goodness knows how long it had been there but if your child has one GET CHECKUPS REGULARLY.

 

Sharyn

[Guest guest]

I want to tell you thank you for your story. And the biggest reason for me

saying this is because my husband has suffered from 2 of these and just recently

I was diagnosed with it also. However mines seem to be a more damaging case then

even my husbands. He lost his inner left ear and partial hearing loss of his

right and minimal damage due to the fact he had a great dr this time who caught

it and was experienced. Even though I am seeing the same specialist, I have been

reluctant to go thru with the suggestion of surgery. It is in both ears and has

already disentegrated the bone and ear canal of my left. It is believed my case

is possibly congenital. I have had ear issues my whole life. I was afraid to

face the effects of what will happen and was honestly going to let it go. But I

read your story and thought if you could go through all that even after

everything, maybe I can face it as well.

>

> I've been reading all the stories on this site for 2-3 months now and have

been searching for one similar to mine but havn't found one (except from one

gentleman who very kindly replied to a query that I had about my symptoms).

> I didn't present with the usual symptoms of pain and discharge - I had one

symptom which started off as severe spasm on the right side of my face for about

3 weeks (lasted about 30 seconds and happened 4-5 times per day).  Things seemed

to settle down for a month or so and then one morning when I was putting on my

lipstick I noticed that my mouth wasn't opening properly on the right side. 

This was the onset of right facial paralysis that at first was diagnosed as

Bell's Palsy but, unlike Bell's Palsy, it got worse over the next several months

instead of better.  This all started in May 2010 and by the time I hac an MRI in

April 2011 the paralysis was affecting my right eye as well - it was getting

very dry and I could no longer blink properly or close it.  The MRI showed a

'large and agressive' cholesteotoma' that had wrapped around most of the

workings of my inner ear as well as over into the petrous apex, vestibule,

stapes, malleus, incus,

> cochlea, the bony covering of my facial nerve and had even started on my jaw

bone!  A CT scan 1 week later helped to identify how extensive it was and I was

finally booked in for an operation so fast my feet barely had time to touch the

ground.

> During the 8 and a half hour operation, my fantastic surgeon had to remove the

alien piecemeal and had to go carefully over the dura but he thinks he may have

got it all - yearly MRI's are the order of the day for me now.

> I have been left with probably permanent facial paralysis and further

operations on my face and eye to give me some symmetry are on the cards soon.  I

have had a subtotal petrosectomy and blind sac closure so I no longer have any

inner ear on the right side, in fact I carry what's left of my tiny incus and

malleus in a locket round my neck - the stapes was gone.

> So don't be reluctant for further checkups and 'look and see' ops - dont muck

about with these things, they are lethal and can even kill if left alone because

they will eat into the dura leaving the brain open to absesses and infection -

mine was VERY close to doing this.

> It's likely that mine also may have been growing for years, even since

childhood - I had lots of ear infections up until just a few years ago and I am

now 60 years old.  Goodness knows how long it had been there but if your child

has one GET CHECKUPS REGULARLY.

>  

> Sharyn

>