HELP DOES ANYONE ELSE FEEL LIKE THIS (ear)

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Hi everyone its really refreshing knowing im not the only one going threw this! Im 31 and from 7 have had 2 mastoid ops 2 revision mastoidectamys and now due for a mastoid obliteration! I just want to no does anyone else feel like i do constant pain in my head head always itchy awfull tastes sometimes can also smell and taste fluid from ear also if i flick my tounge on the roof of my mouth it feels like the back of my tounge is in my ear also constant worrying about possible brain infections abcesses etc! Also when i swallow my infected ear squelchs is all of this stuff normal or am i alone my doctor always basically says it s normal it comes with the condition! Im also contemplating paying private for a mri scan as ive never had one and constantly feel like somethings not right in my head thanks!!!

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  • Posted

    Hi david73334,

    I've had 3 mastoidectomies followed by a mastoid obliteration towards the end of last year.  You mention about flicking your tongue against the roof of your mouth makes it feel like it's in you ear, I thought I was the only one!  When I brush my tongue on my teeth it tickles my ear.  This is probably due to when you had one of your ear op's the incision made behind the ear cut your taste nerve to that side of your tongue.  I had a metallic taste after my second op' and asked my consultant - he said he had to severe it to get to the cholesteatoma.  My taste is back to normal now, read somewhere the nerves from the other side of the tongue can grow across to compensate.  The pain, bad taste and smell could be due to a cholesteatoma.  Just before my mastoid obliteration I got big smelly ear discharges from my affected ear (plus pain) and after an MRI scan showed it was due to the re-occurence of a cholesteatoma.  Don't worry about brain infections/abcesses, these are very rare and only occur if cholesteatomas are left untreated, the fact you're being seen means they are monitoring you. When I had my mastoid obliteration they removed the new cholesteatoma.  I'm due an MRI a year later (Nov' this year) to check all is still clear.  Hope all goes well - SteveM.

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    • Posted

      Hi stevie thanks for your message ive mentioned mri scans to my consultant with no affect im due to see my gp on tuesday im going to ask for a refferal to get a scan or end up paying for 1 private! Are you ok now then?
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    • Posted

      Hi I am due a mastoid obliteration in November this year. Can I just ask how the recovery was and how long. I had a c toma removed in 1979 and my ear has been quite good. Last November I got an infection that would not go away so in feb i had a  ct scan to ensure the c toma hadn't returned. All was clear thankfully. Still lots of smelly discharge and pain so after a year and endless antibiotics this is the last resort. Have obviously looked online for more info but it's not always easy to get the plain and simple answers you need in "non technical" terms. 
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    • Posted

      Hi Becky157, I've had a few mastoidectomies in the past (incision behind the ear).  My mastoid obliteration recovery was very similiar to these except it took a few extra weeks for the swelling behind my ear to completely go down (about 4 or 5 weeks after op').  I got a bit of acheing/pain initially but now next to nothing. I now rarely have a little ache for a day or two then completely goes.  The advantages of this op' is that a new cholesteatoma can't form (because the ear drum has been removed and sealed up) & I no longer have to keep the ear dry and can go swimming with no worries.  Hope all goes well in November, SteveM
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  • Posted

    Hi david, I'm doing well, everything feels completely back to normal now.  You said you were due a mastoid obliteration - have they told you when?  During the op' they will be able to see a lot more than an MRI as they will be looking directly inside your middle ear - maybe why your consultant doesn't think an MRI's required.  Is your consultant an ear specialist? When you see your gp be warned they are 'general practioners' - not ear specialists, they probably don't know much about cholesteatomas. My gp kept telling me I had an ear infection for months when i first got a cholesteatoma while it was wreaking havoc, it was an (ear) ent specialist that correctly diagnosed it.
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    • Posted

      Hi stevie sorry for the late reply ive been away playing golf for the weekend not very well though my balance is shot of these ops! My obliteration is not untill december? The mri is more for whats happening in my head it feels under pressure and painfull most days im now taking codeine all the time for the pain i sometimes get vertigo and dizzy spells and hot flushes too it just gets me worried as u here of loads of people get brain abcesses and infections due to lack of room between my inner ear and skull now as ive had this since i was 7 ive avoided hospitals for years as a child i used to hide the letters from parents as was scared. Also because of the 5 previous ops i can get my thumb in my ear the canal is that big and work on building sites so always dusty and infected! And the infection only has to get in your bloodstreM and your knackered there is a hirrible example of this if you google man dies from ear infection he was in the same line of wirk as me and he was sent home from A&E  couple of times tbey said it was a ear infection it ended up in his bloodstreAm and killed him he left a lovely family behind! I no its rare but we are only human and worrying is something we cant help! 
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  • Posted

    When I first got the symptoms of condition (about 11 years ago) I was sent home after a few days in hospital.  They thought my dizziness and ear discomfort was a bad ear infection and after giving me lots of intravenous antibiotics said all was better.  I was back in again a day later after getting spin attacks (vertigo) terrifying experience – like being on an out of control fair ground ride.  It was only then a clued up hospital doctor decided to give me a CT scan that confirmed the problem.  Maybe you are right, a CT or MRI would show if anything else is wrong.  They said the infection caused by my cholesteatoma was so bad it probably destroyed the nerves in my cochlea and had made a hole in it.  I remember my specialist being honest with me and telling me it was a complete mess inside my middle ear after my first op’.  Good points are that although my hearing’s gone in my affected ear, so’s the balance so I don’t suffer from dizziness and vertigo anymore.  I too used to work in dusty environments - refineries and power stations, but also had to fly a lot for work which I discovered can cause the condition due to pressure changes in the plane.  I also remember having to constantly take pain killers for months due to the pain in my ear.  When I told my gp about the pain he gave me 6 months supply of ibuprofen but wouldn’t send me to see a specialist which might have saved my hearing.  I was very fortunate to eventually see what I regard as an outstanding specialist that helped me sort my ear problems out and get my life back to normal again - I hope you have the same luck! Best wishes, Steve
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  • Posted

    Back in Feb i had a radical mastoidectomy in my right ear due to cholesteatoma had suffered for years with a leaking ear but gave up going to the dr's years and years ago as was getting nowhere.I had a brain abcess back in April 2013 and had to have a craniotomy so i am one of the lucky ones!! Now i suffer all on my right side weird and strange feelings  the whole right side.Nobody would even know looking at me what i have been through and the dr's are still not sure if the abcess was actually caused through the ear.Also with the mastoidectomy i'm lucky that i didn't loose my hearing but the dr did say the small bones had eroded and the cholesteatoma was nearly touching my Labyrinth.The medical report said they tried to get rid of granulation as much and as safe as possible !!!The only thing i don't really want to think that it can come back and have to go through that again and my left ear from time too time gets achy but no discharge even though in the past i have had occasions of a leaking ear but nothing like the right ear.While i was in hospital waiting for my mastoidectomy i remember one of the nurses being there with the dr when examning my ear and said "omg" when she had a look in the ear this was due to the ear actually just pumping out fluid,sounds disgusting i know but at that time it was the worst it had ever been.Whether this had something to do with op on the brain abcess i don't really know.It is now after all this time that i actually feel more like the old me before all this happened so it takes a long time which they never tell you what to expect and for how long.

     

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    • Posted

      Hi gaby thanks for the reply! What made u no u had a brain abcess did u feel different or was it just spotted on a scan ive requested a mri scan but no one seems to be listening to me?
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  • Posted

    Very good friends who rushed me to hospital due to me acting out of character and having a constant headache and ear ache for about a week .The hospital took a ct scan and got rushed to another hospital as scan was showing a lesion on right siide of brain.

    Then mri to also check to see if it was a secondary lesion which told it wasn't!

    Also had another MRI back in Feb just before my mastoidectomy.

    just to let you know i am not UK based but living in Cyprus and no i did not go private.I had a dr come from the uk to do my mastoidectomy because no one has the experience here and its something they do here if no one is experienced enough and funnily enough he was cypriot but works and lives in the uk!!

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  • Posted

    Also David like an earlier post regarding an MRI its true, its not till the dr goe's into the ear he can actually see the damage that has been caused and what procedure he will actually do

    My dr was actually very good in explaining what he had to do and why!

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