The Girl: Living With A Cholesteatoma

I've recently been in hospital because of the long-term illness I have, and whilst there I had a lot of time to think. I remember how daunting it was, not just for me, but also my mum and dad, when I was told I had a Cholesteatoma. It's a big word, and it can be very frightening! When you Google it, you're met with a bunch of stories that can leave you feeling very scared, so I thought I'd do a post that will hopefully show on Google when you type in Cholesteatoma to inform people of what it is in terms that are a lot easier to understand! It's also for people I know away from the blogging world who don't understand what it is, but question why I'm always unwell. I hope this answers a lot of questions!

I started having a lot of problems with my left ear at the age of around 9. I woke up one morning and my ear was full of dried blood. Gross right. I'd never had any problems with my ears before, except maybe the odd ear infection, so this was very out of the ordinary for me! So off I went to the doctors, only for them to fob me off with an ear infection, which it clearly wasn't. For the next few weeks I had a lot of dizzy spells, and in the end my mum took me back to the doctors where they gave me a referral to see a ear nose and throat consultant at my local hospital. All well and good right?
Wrong. I had countless trips to the hospital over 2 years because they diagnosed it as glue ear. I had endless operations to 'clean out' my ear, and I had grommets put in many times. Yet my condition did not improve. However throughout all this time I had still not experienced any pain at all, not even your normal earache. This worried me, because that meant it could have been going on years without me knowing.
Then one day I had a standard check up with my consultant when I was around 10 or 11. He looked inside my ear under a microscope (an experience that still terrifies me to this day) and suggested I have another operation over Christmas and New Year to have permanent grommets in my ear. Immediately my mum panicked because it must have been serious to have surgery over the Christmas period, and the permanent grommets meant I would never be able to go swimming again and I would also have a permanent hole in my ear, which could be very dangerous. Being young, my mum didn't want this obviously, so as soon as we got home she booked a private second opinion for me.
This was the day I was diagnosed with a Cholesteatoma. The consultant I went to see put a little camera inside my ear to show me inside my ear on a screen (he was disgusted this had never been done before). It was just black. Think of when you eat a Blackjack sweet and it gets all black and sticky- that's what my ear looked like inside. It was horrifying! He then explained what a Cholesteatoma was and recommended surgery.

What is a Cholesteatoma and how is it formed?
A Cholesteatoma is a benign tumour (not cancerous) made up of an abnormal skin growth in the middle ear just behind the ear drum. Cholesteatomas can sometimes develop as cysts or pouches that shed layers of old skin, which eventually builds up in the middle ear. This explained why one day I had what my mum thought was paper coming out of my ear. Shedded skin. I told you this was not for the feint hearted.
A cholesteatoma usually occurs because of poor Eustachian tube function as well as infection in the middle ear. The Eustachian tube conveys air from the back of the nose into the middle ear to equalize ear pressure (“clear the ears”). When the Eustachian tubes work poorly, perhaps due to allergy, a cold, or sinusitis, the air in the middle ear is absorbed by the body, creating a partial vacuum in the ear. The vacuum pressure sucks in a pouch or sac by stretching the eardrum, especially areas weakened by previous infections. This can then develop into a sac, and this is a Cholesteatoma.

What are the symptoms/ What to watch out for?
There are probably more symptoms, but these are the ones I experienced. Other than the ear full of dried blood I mentioned earlier, I had a vile smell coming from my ear. It got to the point where my mum and dad refused to stand on the left side of me if we were out, because it smelt that bad. I also had a lot of dizziness, because it's in the ear it disrupts your balance. I passed out a couple of times because of this, especially if I stood up too fast. I also had a lot of hearing loss! I found myself having to turn the television up significantly louder, and I struggled to hear in noisy places. My ear also felt very blocked at times.

What happened after the diagnosis?
I had my first lot of actual Cholesteatoma surgery under general anaesthetic. Because the disease hides behind the ear drum, it wasn't known how far it had spread because it often doesn't show up on MRI and CT scans, which I had plenty of! The surgery was a success and I had all of my Cholesteatoma removed. My consultant said if it was likely to return, it would be within the first year of recovery. During the first year I was fine, I had regular check ups and none of my symptoms returned. Then in the second year, my Cholesteatoma returned. This time it had wrapped itself around 2 of the 3 small hearing bones on the back of my skull. This meant I had to have a mastoidectomy and have the 2 affected bones drilled off my skull. Actually not as painful as it sounds! The disease did not return the following year. Because my hearing suffered after this operation, the year afterwards I had reconstructive surgery to improve my hearing. I couldn't have a cochlear implant because there was only one hearing bone remaining, so I had an implant put into the middle ear made of titanium. This gave the sound something to bounce off and improved my hearing dramatically.
It didn't stop there though. The Cholesteatoma returned again, and this time I had to have my implant removed because it had been destroyed by the disease. My consultant then moved to a new hospital, so I had to start the whole process again with a new one. The disease came back once more, and once more it was removed. He then started to work on improving my hearing, and this meant having another implant. It was a success. I went 2 to 3 years without the disease returning, which was the longest I'd ever gone. I didn't dare get excited, and this year I had some of the symptoms again. My consultant was adamant it hadn't come back, but after a stern telling off from me he agreed to operate, and I was right. It hadn't come back in full force because it was caught early enough, and it hadn't touched my implant which was a huge bonus. I had a myringoplasty and an ossiculoplasty, which when done together is called a tympanoplasty, to reconstruct my eardrum. However, my surgeon accidently disrupted my implant, much to his annoyance, and I'm still waiting for my hearing to return, so I'll keep you posted on that one.

I have had a few complications with my surgery, and most people have much more straight forward procedures than me so don't panic!

So after around 8 years of surgery in my ears, I'm left with some lovely scars behind the back of my ear and I currently wear a hearing aid. My advice would be to not let anyone fob you off. If you think it's something more serious it is always worth getting a second opinion as my experiences prove. If I hadn't have had that second opinion I might not have been here to blog this now. It sounds dramatic, but if my Cholesteatoma had progressed through my final mastoid bone, it could have gone straight to my brain, and brain abscesses and meningitis are serious, (but rare!) complications if a Cholesteatoma is left untreated, so push to get it checked out. It isn't worth waiting until it's too late.

I hope this post has answered questions that a Cholesteatoma raises, but if it hasn't feel free to email me at justdoingkatie@hotmail.com and I will try my best to advise you or answer any questions you have. I'm not a medical expert, but I do have my personal experiences.
All the best
Katie xx


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  2. Hi katie, thanks for writing this blog as my little girl is going in for mastoid surgery next month and I am terrified but reading your story I knoe how important its is she has it done. Thanks again.

    1. Hope your little girl is ok and all went well x

  3. Reading your story reliesing I'm not alone .I've had problems with my hearing since I was 5 mgs messed up with my surgery and now I'm in my forties they discover mastoid tumours behide both inner ear eating away a bone .I've had surgery a week ago but have been very I'll with headaches loss of memory and dizzy but lucky to be here as I had no bone left one of my mastoid growths was the size of a 10p .hopefully it has been resolved .thanks for your blog

    1. Hope you're feeling much better now- it's a daily battle isn't it.
      Sending my love x

  4. It's always good to see a "happy" story, I was diagnosed with a cholesteatoma when I was 12.

    After many doctor trips and groumets it was diagnosed after the cholesteatoma got to it's worst stage and cause facial paralysis on the left side of my face.

    I was bullied all throughout high school and it's a burden I live with everyday that breaks my heart.

    I wish more people and doctors knew about it so no one else gets miss diagonosed to the point that they end up with what happen to me.

  5. Dear Katie: Thank you for posting. We are not alone. This is a silent disease that impacts the quality of life (hearing, balance and constant fear of another grueling surgery). Best to us all who endure life with the cholesteatoma.

  6. Hi Katie,
    Thanks for posting this up. Always good to know you're not alone when things are a bit rough, as they are currently here. I hope you're doing well and the ear isn't causing too much trouble!

    Thanks again!
    Fellow blogger :)

  7. Hi Katie,
    Thanks for this, I feel like it's good to hear from others when times are a bit rough-currently waiting for a scan to check things are ok but it doesn't feel like it. I hope you're doing well and the ear(s) aren't causing too much trouble.

  8. Hi Katie

    I really appreciate your blog, I have never come across someone else with the same awful experience as myself.

    It's been awhile since you wrote this blog, how are you doing now.

    I have had two ear ops to remove cholsmtoma and have a titanium implant.

    I am not waiting for a third op in four years to remove more cholsmtoma.

    I would love to hear from you.

    Kind regards

    Mike Brooks

  9. Hi Katie my son suffered from.a chlosteatoma and had 2 operations to date one to remove it and 2nd one reconstructive surgery now after 2 years he developed an aural polyp in his ear I don't know if chlosteatoma is,present yet until the polyp has come down did you ever have this?

  10. Hi my 6 year old son has just been diagnosed with chlosueatoma, he went in hospital for grommets and they could only put them in one ear because of what they found, they are unsure tho as no bone has eroded, we're just waiting for surgery date now I'm petrified

  11. I had cholesteatoma for many years undiagnosed got said I had it when I was 5 diagnosed 2012 lots of issues come with undiagnosed

  12. I was diagnosed cholesteatoma since 3 years. now, i have inserted grommet and hearing is improved. but, when air inside stomach coming out through that grommet opening, i feel pain in ear. is there anyone who inserted grommet for cholesteatoma? i am afriad that it can make worse for disease.

  13. Hello. My husband had two surgeries of cholesteatoma already. Now his last MRI describes a highly suggestive cholesteatoma. Does anyone know if it is possbile to do a thrd surgery? Iam really afraid. Thanks

  14. Hiya, I have come across your page after desperately searching for advice with no luck. I am due to have my operation within the next 2 months. I have been experiencing severe pain for the past 2 weeks. I am currently taking tramadol, ibrufeen and co cocodamol as directed by my doctor which is helping but I am still having sharp pains (the type you can't help but call out loud) is this normal and why is it so painful? Has anyone else experienced this? I have a very high pain threshold and over the last 5 months have been able to deal with the discomfort without the need of pain relief x

  15. Hey Katie. I have a few questions or you about ur ears. Could you send me ur email so I could message you there? I'm also going through this now and would like to talk to someone who's already been there.

  16. Thank you so much for writing this...I'm having a tympanomastoidectomy in 5 days to remove the Cholesteatoma in my left ear, along with a septoplasty and urbanite reduction at the same time. It's great know that there really are others out there that have gone through this too.

  17. How can you tell you have cholesteatoma back last year i find i have cholesteatoma and for 2 week i woke up my bed have blood what does it mean

  18. Found really good website
    Entkent.com cholesteatoma. SoundS like a good doctor. Also Dr. FINA in Minnepolis Minnesota is doing robotic surgery. Amazing to hear about all these since it is rare. Question: why don't doctors do more to keep tubes open? One told me "we don't do that anymore, but u can buy a hearing aid.".. Went to 4 ent doctors b4 first ding this crazy thing.