Cholesteatoma and facial paralysis

[nkrina]

Hi, I´m a female patient of 42 years old and I want to say hi to this community.

I have been operated 2 times of Cholesteatoma in my left ear. The first was on December 2005, and the previous symptons were hearing loss (I only heard a strong internal noise) and dizziness. The surgery of my middle ear was successful, although I woke up with facial palsy during just a few hours.

The second one was on December 2015, exactly 10 years after. The previous sympton was a progresive facial paralysis on my left side. Initially I was diagnosed with Bell's Palsy, but the therapy didn't work and my condition got worse. After many exams, I was diagnosed with a Cholesteatoma in my internal ear, in an unusual area where my facial nerve was being compressed. When I woke up of this surgery, the paralysis was total on my left side. I couldn't close my eye, eat without spilling, smile, speak in a modulated way. My eye was killing me, because it was constantly dazzled and irritated. I couldn´t see normally.

A first neurological prognosis indicated my palsy was permanent, only treatable with cosmetic surgery. But I realized I was slowly getting better. How could be that possible? Look images of my progress here: bit.ly/1WLybJB

I looked for a second opinion, and a new ECM indicated my facial nerve was reinnervating the muscles of my face. Now I have symptons of synkinesis, I have some involuntary movements between the eye and mouth.

I'm still hopeful, I´m doing exercises and facial massages in front the mirror, every day. I know I will never recover a 100%, but any little progress is a gain for me. See some recent images here: bit.ly/1WejDDG

Please write a comment if you had or have a similar disease. Best regards for all of you.

[Karen-FPUK Partner]

Hello, thank you for posting about your experiences. Cholesteatoma is a rare cause of facial palsy and this is probably why you haven't had any replies yet. I do know a couple of people who have facial palsy due to this cause. How is your recovery going now? If you have particular questions I could ask the people I know if you like?

[nkrina in reply to Karen-FPUK]

Hi Karen, thanks for your reply!

I would like to make contact with those who have suffered a similar illness, and also give a message of hope, because recovery at the beginning seemed so distant and uncertain, which for me was a surprise achieve some improvement. Today I am re-educating my face and have appeared symptoms of synkinesis. I would like to reduce as much as possible the synkinesis and improve the symmetry of my movements. Do you know if I must reduce chewing by the affected side? (to avoid the increase of eye's synkinesis when I move my mouth).

[Karen-FPUK Partner in reply to nkrina]

You would need a facial therapist to give you a bespoke exercise plan. Whereabouts are you located?

[robertcooksley in reply to Karen-FPUK]

Hi Karen,

My name is Rob and I have been through hell with a Cholesteatoma all my life. I say all my life I am 57 and was diagnosed when I was 52. Since the first operation which took 8.5 hrs I have another 6hr operation since, my consultant did say it was the worst he had ever dealt with and had been there for many years, I had had 5 operations previously for ear infections and the Cholesteatoma was missed each time.. Only recently my face palsy has developed(literally over night) and is causing problems to my eye and mouth. I am currently having eye surgery, and am about to see a facial surgeon privately to try and lift my mouth, what are your thoughts on this, thank you

[Karen-FPUK Partner in reply to robertcooksley]

Hi Rob, you should be able to access this help via the NHS if you are a UK citizen. If you want more info please email our support team on [e-mail] or give us a call on 0300 030 9333 and we will do our best to help signpost you.

[Karen-FPUK Partner]

We have a story on our website about Sheila who had a cholesteatoma where she talks about how she has been helped. facialpalsy.org.uk/personal...

[nkrina]

Thanks Karen, I felt very involved with Sheila's story. I am currently not following any treatment to improve my facial paralysis. On my own I tried acupuncture, but I did not notice any progress. In my first post I felt optimistic because I noticed progress every day, but the synkinesis that affects my eyelids is now uncontrollable and I suffer from a very annoying tensional headache. After 18 months of my cholesteatoma surgery, unfortunately I do not feel normal nor do I have a normal life.

Like Sheila I sometimes feel very sad.I have never filmed my face, because I fear my own reaction after seeing me: it could be very encouraging or all the opposite.

My neurologist offered me a Botox treatment, but I still don't dare to do it. I'm from Chile, and apparently there are no specialized centers in the treatment of facial paralysis here.