Cholesteatoma in BOTH ears? ...anyone else...?

Posted , 3 users are following.

Hi all,

Has anyone experiene a recurrent cholesteatoma in one ear and now a cholesteatoma in the other?? If anyone can relate to what I've got below, any advice or help would be much appreciated...

Here it goes:::

I experience chronic pain and chronic migraines as a result of the 3 surgeries I've had in my right ear. I have severe tinnitus. So severe, that there are times when I literally cannot hear anything around me. Another thing is that sound gets extremely distorted should a voice or sound be too high or too low - you can imagine how difficult this is being a PreSales IT Architect who speaks with a number of people every day.

Also, my right eyelid and right side of my face fall a little lower than my left. In addition to this, I feel pain outside the ear as well and in the muscle that has been relocated three times for each surgery. This causes me pain when I simply move my head in any direction...even when I make facial expressions. Dizziness and vertigo are almost a daily occurence with some days worse than others...It feels like the room is in a blender. Driving is also becoming incresingly difficult as I often feel like the car is still moving when I come to a stop and vice versa....It's a laundry list of things, I know.

I now have a cholesteatoma in my LEFT ear with my 1st surgery on that is on 11/13/15.

Anyway, feedback, discussion, questions are all welcomed...I could use the support

All the best, 


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4 Replies

  • Posted

    Hi Bryan

    Yes, I too have bilateral choloesteatoma.  Diagnosed in 2013.  Had left ear

    operated on in Feb 2014, the toma (as I like to call it) was wrapped around

    my facial nerve pretty bad, 3.5 hour op, home same day, dizzy spells were

    much improved after around 4-5 weeks.  Had right ear done in June of this year,

    5 hour op absolutely totally different from the left ear, recovery was majorly slow, dizziness increased ten fold and to top it off I took a reaction to the BIPP dressing inside my ear and ended up back in hospital for 3 days !!!!

    According to my surgeon I have had this for 20 years plus, I was originally diagnosed with Meneries Disease.  Do you take any tablets for the dizzy spells ?

    Also, as the dizzy / vertigo symptoms are like those of Meneries, I would suggest going onto the Meneries website, there are some useful head exercised you can try which may help.

    Have been told I may need a further operation in my left ear, not because it has come back but due to fluid trapped and its causing my eardrum to retract, to be honest I dont know where this ends/how many ops etc or if indeed it actually goes away.  My dizzyness has thankfully been much improved, but for 15 odd years I walked as though I was roaring drunk, couldnt walk at all in a straight line etc, my vertigo is very bad though, if I look up to quickly etc I am all over the shop.  Sorry if this has bored you smile if you need me to answer anything please feel free to ask.  Forgot to mention the tinnitus, I swear I have an F16 fighter yet in my ears at times, I stick in headphones and listen to music when its really bad just to distract from the noise !!!!

    Best Wishes



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  • Posted

    oops that was fighter jet not yet, soz
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  • Posted

    My daughter has recurrenting cholesteatoma in both ears. She also has the problem of her left side of her face drooping like a stroke. It is caused by a facial being hit by the cholesteatoma because it took a long time to diagnois. Cholesteatoma will eat stuff(hearing bones,ear canals,skull bones,nerves). But also if your surgreon hit that facial nerve while performing the surgrury, as the nerve is so painly close it a major risk during this type of surgury. Did the drooping or any problems happen before or after the surguries? It is very common about the room spinning while having the cholesteatoma. Hopefully the will go away after the surgury after you heal.
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  • Posted

    You are unfortunate to have disease in both ears. The original problem which resulted in cholesteatoma in your right ear most probably triggered a similar though slower process in your left ear long ago. It could be your current dizziness is caused by active disease with associated inflammation in your left ear and the hope would be it may settle once your are recovered from surgery. You could also ask your surgeon to check the right ear at the same time. Wishing you best wishes for your surgery.
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