Cholesteatoma in left ear.

Posted , 3 users are following.

Hi everyone I have a few questions about this horrible disease but first of all if it helps anyone to get it detected quicker I will try explain my past troubles with my ear.

Ever since I was a kid I have always had problems with my left ear I even remember vaguely going to see an ENT at about the age of 4 and on my mum on his recommendations to use warm olive oil in my ears. Ever since then until about the age of 16 to 17 I was constantly having ear infections I would say about 3 or 4 a year, all of a sudden though around the age of 16 or 17 I stopped getting them as frequent maybe one a year at the most. For the last 3 years though (I am now 31) my infections in my ear seemed to be picking up again speacially after going abroad and doing a lot of swimming. As I had never heard of cholesteatoma I never thought once it was anything that would need an operation I just went to the doctors got some drops and thought nothing else of it. Last year I had my usual summer holiday away with my family and did a lot of swimming with my son only to get on the plane home and feel a weird sensation in my left ear, not painful but just weird and unusual. I went back to work like normal a few days later but noticed my hearing was a bit quieter with a bit of pain. Thinking I had another infection I went back to the doctors and was told I was correct and given some drops, about two weeks later drops finished ear worse I went back once again to the doctor to be prescribed oral antibiotics. After this course the pain had gone but my ear was still muffled. Now rolls on another few weeks thinking my hearing will come back it is just blocked still, my ear starts to discharge some nasty stuff so once again a trip to the doctors. This time it seemed like my doctor was getting p*ssed off with me and basically printed me out another prescription without looking in my ear and said take them drops it will get better. Obviously I take his advise and nothing got better at all infact my ear started leaking blood and one morning it was hurting me so bad I decided to forget the doctor and go straight to A and E, where I was told I had a burst ear drum with a bad case of  otitis media but was guaranteed it was nothing to worry about my hearing will come back and was sent away with yet more drops. After about another month or two I had had enough rang the hospital to see if I could see a specialist which I was told would have to be made through my GP, I went to see my GP and told him bluntly I want to see an ENT reluctantly he made me an appointment. On my first appointment my ENT told me straight away that he thinks it is cholesteatoma now I am waiting for surgery.

I know I waffled on about that their but my story is to try get someone going through the same and not being listened to and feeling like they are going in circles to demand to see an ENT.

Right now my questions to people who have had this before or currently  have it.

Is it normal to be feeling headaches on the side affected that sometimes moves up to the middle of the head?

Did it make your hearing in that ear worse after surgery?

What was the pain like? Did you need pain meds or was it bearable after surgery? I hate taking any form of pain medication I would just rather take the pain or is it too bad?

Can you feel where they have drilled in to your bone after?

Thank you.

 

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  • Posted

    Hi Darren

    That was like reading my own story.  Name is Donna am 43 hail from Bonnie Scotland and have bilaterial choloesteatoma. Two surgeries over the last 2

    years, was only diagnosed 3 years ago, apparently have had it 21 years only discovered after numerous visits to doctors, ent, hospital and the list goes on.

    To answer your questions I personally have had two very different surgeries as my choloesteatoma was wrapped round my facial nerve on left hand side, op duration was 3.5 hours.  No pain, no headaches, dizziness and vertigo which has made me feel at time as if I were mad, gone.  Not so good is fast forward on and I have persistent glue ear, hearing is muffled but I was told before surgery to expect further hearing loss (blighter had eaten away at all 3 hearing bones)  Had a grommet inserted last June which fell out.  Good news, no recurrence so I am grateful for what I have.

    Right ear, was a long 5 hour op, pain was present, few days on manadol and ibruprofen.  Took me a while longer to get over this op but feel fantastic.  Hearing better than before op and surgeon seems very pleased.

    Its a horrible horrible disease, I know everyone is different but you will be absolutely fine.  I can feel where he drilled in and yes, in cold weather it hurts slightly.  Best advise would be keep ear dry and keep the wind out of them.

    Wish you all the best, if you need to ask any further questions please do not hesitate.

    Kindest Regards

    Donna

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  • Posted

    Thank you donna finally some truth. I asked my doctor and surgeon if I would be able to feel the hole they both said no, after reading up and now your comment I know that is not true.

    Thank you for the reply I hope everything goes well for you in the future.

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  • Posted

    Hi Darren

    I also had cholesteatoma in my left ear and was operated on in 2013. Mine was also in the ear canal itself so they said which is very unusual and rare.

    I had headaches and like you I was backwards and forwards to my gp, given various antibiotics and then it bled and eventually after going to ent I was daignosed there and then. Mine felt blocked and my hearing was not very good. I also had a numbness of my face and down where my tubes are.

    They usually do a ct scan before operating so they have some idea the extent they are dealing with. Mine apparently was extensive and I had my operation and various grafts but they used my own skull bone for this. I also had my ear canal reconstructed and my eardrum mended. I still have the symptoms of fullness and pain on lying down now and I have had two mri scans but it's not returned yet they say if it ever does. I get a very dry ear now too. I did come home the same day which was because I complained as I hate hospital and they reluctantly allowed this. I was supposed to stay in though. They put a tight headbandage on that you should not remove. I removed mine because it felt too tight and by morning I was swelled up like elephant man.

    The operation sounds worse than it is and I found that my head and ear were numb for a long time anyway. I took lots of painkillers....tramadol helped lots, and I was able to put my head in water too but have been told to make sure I dry the ear.

    I did not suffer facial paralysis from the operation but I was unfortunate that when I came around my right side was paralysed from shingles of my right ear. Nothing to do with the op though. That's another story. I do however have a weak eye muscle on my left side now whereby I cannot close the eye properly but they say this is nothing to do with the op. I must admit my face nerve was being attacked before they operated.

    I hope you go on ok.

    Take care

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  • Posted

    Hi Darren

    Not a war really. People go through far worse. Just sometimes I have felt not listened to by gps when I knew something really was not right just like yourself and others too.

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