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.
Written by
nkrina
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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?
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).
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
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 support@facialpalsy.org.uk or give us a call on 0300 030 9333 and we will do our best to help signpost you.
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.
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