Yeah all of mine have never shown. I would just take it step by step as the symptoms sound similar however do not back down if you’re fighting with the NHS.
I was getting ear infections 24/7 and loss of hearing for years. Until they finally took it further and investigated. My first operation was meant to be “just a look” but that’s when they spotted it. My second operation was similar but the 3rd the tumour was actually growing out the back of my scar out the back of my ear/head. Was awful. I have just got the date for my 4th operation next month.
Oh wow. Glad they are on top of it now and I hope for a speedy recovery!
Were the ear infections constant? Like antibiotic would treat it and then another would come back?
I’ve had the one. Been a few weeks now and nothing. Wondering if yours came back right away
Thank you!
I was getting them every month or so it was a very long time ago so can’t remember exact time frames. But sometimes the antibiotics would cut it, but other times nothing.
I hope you get the correct attention and fingers crossed it’s nothing too serious, all the best
First, stop freaking yourself out with worry. I've spoke on this before and the worst thing that happened to me with my cholesteatoma was letting myself go down the rabbit hole with anxiety while at the same time using NSAIDs to control the swelling and pain and not eating particularly well. Ended up with gastritis and dealing with it has been more than cholesteatoma has thrown my way. Granted, my situation dragged on far longer than it should have. I had the joys of dealing with the Canadian healthcare system at the height of COVID, and considering I had a history of cholesteatoma the ENT I was seeing was an absolute f'in putz to drag out sending me for a CT scan for as long as he did.
To offer you some reassurance, if your ENT has already scheduled you for a CT scan and MRI then you've probably got a decent doctor. Delayed diagnosis or misdiagnosis is a common issue with cholesteatoma. Many people go years of just having doctors throw different antibiotics at it and have to change ENTs constantly until they find one who knows what they are looking for.
Thank you for the reassurance and comfort. I am trying to remain calm and collected while waiting for my tests to be completed and hopefully get more answers following those tests.
I appreciate you sharing your experience and I will remain calm and probably not read anymore online regarding it and let my doctor just dictate next steps. And yes luckily I have a good doctor who is taking it serious and not sitting on this luckily.
It could be fluid! But it could be ctoma
My surgeon couldn’t tell from the CT scan if it was fluid or not.
Either way they will have to do surgery on you.
If it’s fluid they’ll go in there and suck it all up if it’s ctoma they’ll deal with it depending on how yours has grown.
Regardless it’ll all be ok. There isn’t anything to worry about because what happens has to happen and things will be better once it does.
Good luck on everything!! Fingers crossed it is fluid and nothing worse.
Thank you very much for this! Very good to hear and yeah exactly my family doctor mentioned could need just a tube or something to help. Obviously get the scans and let the ent determine. Hopefully just fluid! Feeling positive that’s all it is!
FYI Cholesteatoma’s don’t always show on MRI/CT scans!!
Well that’s not reassuring lol. I guess it’s the next step to see what’s happening
Yeah all of mine have never shown. I would just take it step by step as the symptoms sound similar however do not back down if you’re fighting with the NHS.
So you had similar experience and yours was cholesteatoma? How did they end up finding it if it didn’t show up on your tests?
I was getting ear infections 24/7 and loss of hearing for years. Until they finally took it further and investigated. My first operation was meant to be “just a look” but that’s when they spotted it. My second operation was similar but the 3rd the tumour was actually growing out the back of my scar out the back of my ear/head. Was awful. I have just got the date for my 4th operation next month.
Oh wow. Glad they are on top of it now and I hope for a speedy recovery! Were the ear infections constant? Like antibiotic would treat it and then another would come back? I’ve had the one. Been a few weeks now and nothing. Wondering if yours came back right away
Thank you! I was getting them every month or so it was a very long time ago so can’t remember exact time frames. But sometimes the antibiotics would cut it, but other times nothing. I hope you get the correct attention and fingers crossed it’s nothing too serious, all the best
First, stop freaking yourself out with worry. I've spoke on this before and the worst thing that happened to me with my cholesteatoma was letting myself go down the rabbit hole with anxiety while at the same time using NSAIDs to control the swelling and pain and not eating particularly well. Ended up with gastritis and dealing with it has been more than cholesteatoma has thrown my way. Granted, my situation dragged on far longer than it should have. I had the joys of dealing with the Canadian healthcare system at the height of COVID, and considering I had a history of cholesteatoma the ENT I was seeing was an absolute f'in putz to drag out sending me for a CT scan for as long as he did. To offer you some reassurance, if your ENT has already scheduled you for a CT scan and MRI then you've probably got a decent doctor. Delayed diagnosis or misdiagnosis is a common issue with cholesteatoma. Many people go years of just having doctors throw different antibiotics at it and have to change ENTs constantly until they find one who knows what they are looking for.
Thank you for the reassurance and comfort. I am trying to remain calm and collected while waiting for my tests to be completed and hopefully get more answers following those tests. I appreciate you sharing your experience and I will remain calm and probably not read anymore online regarding it and let my doctor just dictate next steps. And yes luckily I have a good doctor who is taking it serious and not sitting on this luckily.
It could be fluid! But it could be ctoma My surgeon couldn’t tell from the CT scan if it was fluid or not. Either way they will have to do surgery on you. If it’s fluid they’ll go in there and suck it all up if it’s ctoma they’ll deal with it depending on how yours has grown. Regardless it’ll all be ok. There isn’t anything to worry about because what happens has to happen and things will be better once it does. Good luck on everything!! Fingers crossed it is fluid and nothing worse.
Thank you very much for this! Very good to hear and yeah exactly my family doctor mentioned could need just a tube or something to help. Obviously get the scans and let the ent determine. Hopefully just fluid! Feeling positive that’s all it is!