Recurrent External Cholesteatoma

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I had my first cholesteatoma in 1994, my condition is a little bit different than cholesteatoma in the middel ear. It is situated in the ear canal and involves the masteoid and the temporal bone. 

From 1994 to 1999 I had 8 surgerys, and the condition healed, when I had the surgery done by the best ear surgeon in DK - and when I stopped smoking as well. 

A couple of month ago my cholesteatoma came back, this was the most frustrating thing ever! The surgeon has retired and has Alheimers, I was told, but my new surgeon was trained by him.

I also have another condition with Herpes Zoster in my trigeminus nerve, and I suspect, that this is Zoster Oticus - also called Ramsay Hunt Syndrome, but noone really listens to me, when I ask. Searching medical databases says, that Zoster can cause small wound or sores in the ear canal, and I think that these sores then evolvesto cholesteatoma, as wounds and sores do not heal easily in the ear canal - skin growing on bone hasn't a good blood supply.

So I had my 9th surgery the 4 april, and the bandage will be removed the 27 april. I can't wait! I get so tired when deaf in one ear, and the bandage makes a lot of pressure. I also can't identify wher sounds come from, and I'm looking for my cell phone several times a day.

Mostly I am worried, because I fear for my facial nerve and I fear for my brain - this is far to close to my cerebral cortex for me to feel safe.

 

Please, do not hesitate to contact me, if you want to share your own story with me. I know noone with this desease! I live in Copenhagen, Denmark, and you can also find me in the FB Group - Cholesteaetoma - the hidden desease. Look for Lene Burchardi :-)