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

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 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

Donna

 

oops that was fighter jet not yet, soz

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.

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.