These things are not to be treated lightly!!

[Guest guest]

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