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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,
Bryan
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donna97903 statebryan
Posted
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
donna97903 statebryan
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