My experience with Cholesteatoma

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Hi everyone i just want too share my experience with cholesteatoma, due to the fact when i was diagnosed with it, i really couldn't find much on the internet about it. It was a very confusing thing for me to mentally deal with.

My name is ben and throughout my whole child hood life, i had continuos ear problems in my left ear, i had constant ear infections ad no doctor could ever pin point what the problem was. Up till about 1 year ago, i was at the beack surfing, i was then knocked into the sand by a big wave, which i didnt take much notice of.

I got home and once again i was faced with the terrible pain of my ear stinging with discharge, i went to the hospital and was told that it was due to inflammation in my tonsils and that i would more then likely need to get them removed. I was okk with this, if all that was involved to stop these constant ear infections was to get my tonsils out i was extremely happy.

Two weeks had passed and the ear infecction had not stopped, so i went and saw my general GP, he told me it was just water blockage in my ear and i should go to the shop and by some waxsol drops. I tried to explain to him that i have had waxsol drops my whole life and they have never done anything to help certain situations with my ear. Too my surprise i was told to shut up and i might learn something new then asked to leave the doctors.

Two days later i woke up with blood pouring out of my ear and dried up blood on the side of my face, we rushed to emergency as this had never happened before and i couldnt understand what had happened. After a period of time, i was told by the emergency doctor that my ear drum had ruptured and they may need to send me to the big hospital in perth to get steroids injected into my ear drum. The quickest i could get into the head hospital in perth charlie gardeners was in 4-5 days time.

So 4-5 days had passed and i was off to the ENT specialist in perth, they cleaned out my ear put a camera down my throat but could not find anything due to how bad the infection and multiple pollyps were in my ear. So i was asked too come back in another week.

after about 3-4 similair trips and some test sent of too see if the pollyps were not cancerous, there was nothing left no one could do. it seemed as if there was nothing wrong. As i was getting discharged, i was very lucky. The head ENT surgeon walked in to just have a quick look over my ear. Within 30 seconds he diagnosed me with cholesteatoma. i was confused and everything around me felt weird. how could i go through this my whole life , then 1 man within 30 seconds find it.

I was told i would have to go for a CT scan to see if it was cholesteatoma, ad how big it. I came back from getting my CT scan done and was told i definately do have it, and it had eaten nearly every little bit of mastoid inside my head. it was also very close to my facial nerve, and was growing upwards towards my brain. I was told i would be in surgerary within the next few weeks. this was hard for me  too accept. 

i couldn't understand alot of what cholesteatoma was, and i tried to get information about it everywhere. all i could find were certain outcomes it could cause if things were to go wrong. i was told surgery was going to be a long one. around 3-4 hours. i got surgery and it went a lot easier on me mentally then what i thought it would, but surgery went for 7-8 hours due to the fact i had 3 cholesteatomas growing in different directions, i also had one growing down my eustichian tube. There is no for us to find out if any of the three have grown back for a couple of months and i will need a few more surgerys to check.

I just want to let everyone know that cholesteatoma can be a serious issue and i do believe there does need to be more awareness for it.

I hope my story will help a few people out there, and if you have any questions or would like someone to talk to please feel free to contact me.

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11 Replies

  • Posted

    Hi Ben

    ended up checking my emails and started reading your story.I had the same op last year after years and years of ear infections and just giving up on it,wrong thing to do i know.The year before  back in 2013 i had really bad right ear pain so decided to do something again after years of not and ended up being diagnosed with right temporal brain abscess and that was by being taken to A&E  and the dr on duty sent me straight away for CT scan and got rushed to the main general hospital here in Cyprus to the neuro ward.I would n't have been surprised if they had told me i had something behind the ear but the brain!!!! So ended up having  a craniotomy to get to the abscess which was 6cm x 4cm and they still don;t know for sure if it was caused by the choleastoma .So after all that i was still getting discharge from the ear again backwards and forwards until i got a dr who diagnosed it as the choleastoma behind my right ear and my mastoid bone was (his words) like honeycomb where it had been infected over the years.Only a few days back went for another ct scan on my brain and mastoid as still things don't seem right but learnt so much by checking on different articles on the web so just keep searching some bloody scarey, but others interesting you don't realise how all these things are connected.

     

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    • Posted

      Hello i know its been 2 years but i wanted to know what is the status of your condition after the craniotomy. Did you have any recurrence? .Im going through the same scenario and it really scares me. 
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  • Posted

    Hi Ben, I'm with you entirely that this needs way more recognition... Due to persistent ear infections my 2 yr old was put on a list for tonsils adenoids and grommets... It took the full 18 weeks to get her done at which point they found the cholestetoma sept..2013 She then had ct scan in October and was referred to Sheffield childrens as Birmingham were running way behind on waiting lists..Sheffield saw us in jan and operated in March 2014 by which time one of her hearing bones had been eaten away completely by the disease and another needed severe cleaning etc.. She had her second grommet fitted in her other ear in November 2014 and now it's grown out again.. She went for an appt at 4.40 last night which requires a hearing test only to discover that dept closed at 4.30.. This resulting in us now requiring 2 additional to complete what should have been done last night... How do you tell a 5 yr old who cannot hear too well and is in pain at school when any surrounding noise is present that she's got to live with it another few weeks as our appt was too late today!!! We have not had any hearing tests done on her operated ear yet as they hope that her grommet ear will compensate any hearing loss until she's much older... I'm not entirely sure how I feel about that but I have insisted now that they test both ears anyway so that we at least know her capabilities and boundaries.. Thankfully her development is not hindered as she can lip read and apparently automatically positions herself where she can hear best in the classroom... As her mom I feel completely helpless
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    • Posted

      We have now discovered that she has a recurring cholestetoma in her bad ear and a new one in her other ear and is awaiting a double mastoid op.. She has been given a temporary hearing band to help in the meantime prior to surgery and will be fitted properly afterwards. She has significant hearing loss in one ear and it's not great in the other. At 5 1/2 years old this is devastating as a parent but she's coping with it way better than us as is still excelling at school so fingers crossed for moving ahead..
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    • Posted

      Hi Marie I know this is a while ago but I wondered how your daughter is coping and did she end up with bone anchored/cochlear hearing aids?  My daughter goes in tomorrow for her left ear cholesteatoma clearance, and once recovered she'll have the right one done.  I'm okay with the operations and think I understand what's going to happen, but no-one can tell me how her hearing will be afterwards and if she'll need further surgery for hearing aids in the future.  She has learning disabilities and speech delay already and I just feel like things are getting away from us.  Neither we nor her teachers at her special school know how much she understands because we don't know how much she can hear (she can't explain to us).  Thanks for your help.

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  • Posted

    Hello

    I just want to run by you that most doctors are rude and dont take the time to really exam. They by there self opinion.. Instead of running test and trying to find a solution..

    Cholestema is serious..

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    • Posted

      I thoroughly agree with you that cholesteatoma is serious. Failure to diagnose by general practitioners is because of a lack of emphasis on ENT training in many medical courses. It is also because cholesteatoma is often a difficult disease to spot - hidden in the middle ear behind a small perforation in the upper eardrum. It is really trapped skin growing in the wrong place behind the eardrum. It often becomes infected and the ear flares with inflammation and forms polyps.

      On your other point - there is no excuse for rudeness by doctors. It could be (no excuse though) frustration at being unable to diagnose a cause for the condition in front of them! Then there is a duty on them, and common sense would siggest a need, to ask for a specialist opinion? Despite my own knowledge it took me four years to persuade my GP to refer me for specialist examination at which cholesteatoma was diagnosed.

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  • Posted

    Hi ben i am not sure if this relates and sorry to post here. I had already posted this to every forums and i had never had any advice or solutions yet.

    Anyway i almost had the same experience as yours and my latest op was March 2014 . Had two operations already. doctors said the op went well it was revision of mastoidectomy. My problem is this. My ear still smells even though it is dry and infection free. I have done a lot of research and already seen number of EENT and all they say is nothing wrong with my ear.

    I am a bit frustrated coz i know there is something wrong because i am experiencing it. I have lose jobs after jobs after jobs because of my condition. No one wants to sit near me because it smells especially qhen i am in cool places where aircon is really cool or if i am in places where there is open air and then air strikes directly my ear then you would amell it and im a bit frustrated coz i cant act normal. I pity my seatmate coz he/she sneeze all the time and can not concentrate because of my ear smell.

    Does anyone experience this? Hope to get advice.

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  • Posted

    Hi ben, ..

    Just read your story and my 16 yr old daughter has just been diagnosed with this condition although they aparently need a second mri to verify..she was admitted to hospital yesterday with severe pain...and the doc has now said her pain levals dont match the condition...shes not a wimp ..and they seem to be delaying surgery...could you tell me more about your pain levals....she cant stay on painkillers till they decide to operate...feeling really frustrated for her 😢

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