Unsuccessful Cholesteatoma operation

Hi everyone,

I'm wondering if anyone else has any experience with the situation I'm going through?

Last October I had Cholesteatoma surgery, my incus was removed because the disease had completely eroded it away. The disease was apparently very dangerously close to my brain. I also had my eardrum rebuilt with some cartilage from my ear.

My existing eardrum perforated after the surgery and the hole never closed up. I've had to keep on using vaseline and cotton wool in the ear when showering but I keep on getting chronic ear infections. I've now got an emergency appointment tomorrow for microsuction.

I was told I'd be put on the waiting list for a second stage operation sometime towards the end of the year but I'm afraid this won't work either.

Has anyone else gone through anything like this?

8 Replies

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  • Yep I have. I use "bioears" ear plugs to shower and they've totally prevented infections - have you considered trying those?

    Stopping infections is your absolute priority plus it's probably the only thing in your control - good luck :)

  • Thanks for your suggestion, I'll order some from Amazon. :)

  • Let me know if you've success like I have - I've been plagued with infections for 30 years and only now this year (so far) infection free due to using them. Frustrating but a relief too :)

  • The_Bear

    Great that you mentioned these plugs :) May I ask how long each plug lasts before having to discard, please?

    Do you know why they might be better than the cotton wool and vaseline, as I currently use?

    I had surgery for cholosteotoma several years ago

    I, too, get (mild) earache after wearing hearing aid and can get infections in external canal so tend not to wear HA except when I need to.

  • Had this in 1990. They completely removed my L ear, tried to rebuild the eardrum and failed, and ended up clearing out the mastoid cavity. So I've had an open mastoid since then and a hearing deficit in that ear - a real pest when taking part in group workshops.

  • Hi.

    I first was diagnosed with this at 15 Iam now 31 still having issues had 6 operation got so much nerve damage in my face from all the ops on so much pain daily an still constant ear infection thought I was the only one. This is a thing that has a massive impact on people lives

  • Hello I have a history of ear problems dating back to my childhood, had a mastoidectomy about 35 years ago and a plastic conductor fitted behind my ear drum. If you still have hearing in the affected ear my advice to you would be err to the side of caution before having any more surgery, I have lost my hearing completely in one ear as a result of a recent operation. Keep your ear dry and arrange to have an aural care nurse microsuck your ears out every 3 months or so

  • I use them a few times each. Depends how clean you can keep them.

    I personally find even a small bit of moisture and the cotton wool sucks it up and into my ear and the Vaseline is expensive and messy

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