What is a cholesteatoma? Lend me your ears!

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As I far as I know, my ears were fine as a child.  It all started when I was about 15 years old when I had recurrent ear infections.  Over the course of a few years my ear drums burst a couple of times and it did seem to effect my hearing slightly. I didn’t think too much of it and got used to standing on the left side of people when chatting.  My close friends were used to it and my boyfriend at the time joked he was going to get a T-shirt with the words “I’m with stupid” with an arrow pointing to the left because it was so predictable.  As it seemed to get worse, Mum took me to see a specialist at the Eye and Ear Hospital.  The seemingly ancient doctor marvelled at the “Tom Bowler” (reference to a large marble here that I did not get at the time) of ear wax – I know, disgusting- that he removed from my left ear.  But he was more worried when I said it didn’t seem to make me hear any better.

I had my hearing tested and it was discovered that the actual mechanics of my hearing was fine, but conducting the hearing along the tubes to my outer ear was where the problem was.  It’s really interesting – to test your hearing they put headphones on you and get you to repeat words or press a button/knock a piece of wood onto a table when you can hear a noise.  (Imagine me trying not to laugh when I had to repeat what I suspected was “ship” but sounded like something else!).  To test the hearing within your inner ear there is a little electroid(?) placed on that nobbly bit behind and underneath your ear and then they continue with the same test.  I could hear those words and noises perfectly fine.

Glue Ear, or fluid within my middle ear, was diagnosed and I was instructed to have a grommet put in my left ear.  It’s a very simple day procedure where they put a little tube into your eardrum so that the fluid can drain as it normally should.  (Lots of young children have grommets put in after recurrent ear infections). You aren’t allowed to get your ear wet when you have grommets in.  This didn’t faze me too much as I’m not too fussed about swimming but it was a pain having to put in ear plugs when showering.  When the grommet eventually fell out (as it’s supposed to) months later, the doctor told me to “Have a great summer” and to swim and snorkel and do whatever I wanted to do.  Brilliant advice.  I was back for another grommet within a year as moisture in my ears caused more ear infections and more problems.

From then on I have avoided getting water in my ears and after having my first baby years later, I flinched every time his ears got wet in the bath as well.  I really didn’t want my little man to inherit my bung ears, especially as he loves the water.  In the years after those grommets at age 21, or whatever it was, my hearing was deteriorating again.  I just believed that that’s the way it was going to be and learnt to live with it.  It was embarrassing telling people I couldn’t hear properly so I didn’t.   I don’t know what I was so concerned about.  Being made fun of perhaps?  It wasn’t a huge problem unless I was at places with a lot of background noise.    But things got even worse still after I had my second child and had another couple of ear infections and burst eardrums.

Mum kept nagging me, as mums do, so I went back to the doctor, age 30 at this stage.  Always listen to your mum and never leave things, thinking it will all be fine.  I learnt my lesson when I went to the ear specialist last year and he told me I had a cholesteatoma. It’s a skin cyst in the middle ear.  Mine had wrapped around the little bones in my ear and my ear drum and it was growing the longer I left it.  The doctor told me that in extreme cases it can cause complete deafness, and press onto your brain. I got what he was getting at.  (He didn’t mention fatality but I read that when I googled cholesteatoma).  I suddenly had a overwhelming comprehension of my mortality and it wasn’t very pleasant.  I went past my parents on my way home to explain to them about it and found myself in tears.  I had never heard of a cholesteatoma before but apparently it is more common than we think.

I know my situation is nothing compared to other illnesses other people have to deal with, but I really wanted to write this to make people aware of what it is.  Hearing loss is not the only symptom of cholesteatoma-it could be something as minute as not being able to taste certain foods.  I also believe my cholesteatoma was the reason for episodes of nausea and dizziness I have had in the past five years.  They occurred more regularly the closer I got to my diagnosis but may have been exacerbated by having two very energetic toddlers to look after.   I genuinely feel blessed that the cyst was discovered and that it can be treated.  If you have or know of someone who has had a cholesteatoma, I would be really interested to hear your story in the comments below.

The very flattering picture above was taken by yours truly after my operation to have the cyst removed.  It was an overnight procedure, preceded by the most horrific twelve hours of fasting.  The surgery took a few hours under a general anaesthetic so I was pretty woozy for a week afterwards.  A few weeks ago at a routine check up it was found that negative pressure in my ear was causing my ear to revert back to the way it was, so I have since had a grommet put in.  This is supposed to keep things at bay until another procedure in four months when the surgeon will attempt to put man-made bones into my ear and restore my hearing completely.  I’m just amazed that they are able to make such tiny bones – the tiniest bones in our body!  And to put them in my ear and fix my hearing, it’s unbelievable!

So the lesson here is: listen to your mother because she is always right, and don’t let things go untreated.  And of course, just enjoy every minute of every day because you don’t know what’s around the corner.  I’m so excited for this impending operation to get my hearing fixed.  Hopefully you’ve learnt something knew and if someone you know has similar symptoms you can encourage them to get it checked out.

*Apologies for my un-scientific terms and explanations in this article

16 thoughts on “What is a cholesteatoma? Lend me your ears!

    1. They are 🙂 yeah, hopefully it will be sorted one way or another soon. If I have to have a permanent grommet for the rest of my life, I can live with that!

  1. Hi I don’t know when this topic was. My son of 8 years old has also a cholesteatoma and he will be operated next monday. As far as we know are his tiny bones intact (don’t know the english name) he has similar to you lots of chronic disease of his middle ears. His left hearing is very bad and he wares a device. The cholesteatoom is diagnosed in hid good ear the right ear. That sucks! But we have a very good doctor and he has seen the cholesteatoma very fast, so it’s very small and hasn’t destroyed anything yet. We are very positive of the operation and we’ll hope my son recovers soon!! I’m glad that we are under control by this doctor every 3 months. Reading you’re story is very reconisible only you didn’t know what going on. I’m happy for you that they have found the problem and lucky for you they fixed it. I wish you all the best! And yes…..mum knows best! Intuition! 😉

    1. Sorry- was having a rest from blogging. I hope your son is alright now and that it is all sorted. Thanks for your comment. It’s nice to share stories and hopefully help people realise it is more common than we think. 🙂

  2. I was just googling away and came across your picture, quite similar to mine. I’ve never really looked into pictures or details of a clausteatoma, probably because I was scared to see. I’m 20, today I went to the ENT to discover mine grew back. Yes, grew back. I had it once when I was at the age of 14. My parents noticed my hearing loss when I started to ask people to repeat themselves after almost every sentence. My first surgery in 2009 was something I’ll never forget. I had two surgeries, one in the back of my ear where made an incision and removed the cyst and a reconstructive surgery on the front of my ear where the hole is. They basically remodeled my ear so that if it ever grew back they could remove it without having to do a big surgery again… Which I never understood until today. For the last week I was having constant ear pain, and for what I’ve been through its safe to say I have high pain tolerance but this past week has been tough. I knew it was more than an earache because of the severity of the pain. I went to the doctor and he said there was some drainage and an infection but he would clean it up and I would be good to go, well he cleaned it up only to find another clausteatoma growing deep in my ear. It took about an hour but he took it out with a suction vaccum. Most painful thing I’ve stayed awake through and I was extremely dizzy at the end but glad that my initial surgery in 2009 on the outside of my ear paid off. I saved a hospital visit, surgery and hospital bills thanks to that surgery. I noticed you said you were having nausea and dizziness for 5 years which is really why I’m writing you. Since 2013 I have been going through constant episodes of severe nausea. It became an every morning thing, like morning sickness. I went to the hospital countless times and had so many blood tests, CT scans any thing you can think of and they could never find out why I was always so sick and dizzy and I think I just figured it out. It probably is because of this clausteatoma. It seems to be the perfect piece to the puzzle which makes me happy to feel like in a way I have a solution to the question I’ve been wanting answers to for so many years. It’s interesting hearing someone else’s story. Having this clausteatoma has seriously altered my every day life, it’s really hard on me but I’m glad I have someone to relate to!

    1. Hi, so sorry to not reply sooner. I stopped blogging after having a third child. I hope all is well with you and that they sorted it out for you. I thought my dizziness was related to the cholesteatoma but even after it was fixed I still had dizziness occasionally when I was run down and exhausted. I absolutely think that the cholesteatoma exacerbated it though. I’m so glad that you could relate to my story. I really hope your operation went well and that you can hear and not be dizzy any more.

  3. I have cholesteatoma diagnosed 13 years ago and probably I’ll need to go into surgery. I find have infections, nor drain, nothing, but the cholesteatoma is in it. I would like to know how is the postoperation ( pain, daily activities allowed – I have two kids!!!!). How about hearing, are you hearing better after surgery?

    1. Sorry to reply so late, I had a break from blogging when I had my third child and am only now getting back into it. My hearing was better and I don’t think I had much pain afterwards. I had to take it easy for a few days and was told not to lift heavy things (I was thinking, my kids!!) for a few weeks. Where they fixed my middle ear unfortunately collapsed a year and a half ago and I am only now going back to get it redone. No regrowth of the cholesteatoma but haven’t been able to hear much. I couldn’t have the surgery sooner due to pregnancy etc. I hope yours is all sorted for you soon. It’s definitely not easy when you have kids to worry about as well.

  4. I just read your piece in the chlosteatoma. I realise you wrote this 4 years ago but I can across it when I was looking up on it. I’m due to get this operation in march and I’m quite nervous, my story is the EXACT same as you’re and I’ve been suffering with loss of hearing and constant infections for about 5 years also. What I want to ask, is the operation itself painful or painful after it? I’m quite nervous for it.
    Ha she you’re hearing improved at all?

    1. Hi. Honestly, it wasn’t that painful but I don’t often take medication so my anesthetic lasted a day or so for me, I think. The incision behind my ear was the most painful part. I’m not sure if you’re interested but if you go to my blog I have written an update on my condition – the same title with ‘again’ at the end of it. My hearing was fixed for 6 months than reverted back again so I’ve had the same operation again about a month ago.
      I hope your operation goes well!

  5. Hi
    Thanks for this post, I’ve found it really useful.
    My 10 year old daughter has had constant ear infections and burst eardrums for the past 7 years and 5 lots of grommets. Most recently a severe infection left her with a small hole in her eardrum that the consultant said is acting like a natural grommet and she’s actually had a few pain free months.
    However the last few weeks she’s had constant nausea, it varies in severity but is there each day, she says she feels ill but nothing hurts and is really pale and exhausted. We’ve had several trips to the doctors and a few tests and they said they think she’s had a virus but the last couple of days I’ve started to wonder if its linked to her ears. Maybe not but I’m definitely going to mention it when we next see the doctor.
    Hope youre doing much better these days xx

    1. Hi Bec,
      thanks for the comment. I have a lot of people write to me about this article as I don’t think there’s many real life stories about cholosteatoma’s out there. I’m not sure my nausea was related to the cyst but it may have been. I had as many burst ear drums and grommets as your daughter so it’s possible she may have what I had.
      Always good to check though. I really hope it isn’t that and that she’s better soon. My cyst was removed and a tiny one grew back and was removed this past January.
      I really feel for you-must be so hard to see your daughter have so many operations. Best of luck to you all. Xx

  6. Hey so glad to read your story and relate. I am 26 and I had my 1st ear surgery for cholesteatoma 2 days ago. I am all wrapped with cotton gauge just like you in the picture. I always had cold and as a child when I showed an ENT. He said it’s a bone growth in your nose, this is what takes all your cold to your ears. He also said you could remove it but it would grow back. There is no guarantee. So my parents thought it doesn’t makes sense to remove it then. I left it and I had no hearing loss uptill 6 months ago. I was 10 then, I am 26 now. I went to an ENT just because my mom kept nagging let show an ENT again. I was then detected with cholesteatoma and got one surgery done. In recovery mode now. Hope to be able to hear the same through my right ear again !!!

  7. I have recently been diagnosed with a cholesteatoma after trips to my family doctor, the emergency room, and ENT and an audiologist (who found it). My symptoms started in March with facial spasms that became worse, in addition to the hearing loss. I was very disappointed in the first ENT who said my ear canals looked fine and that the MRI I had done looked ok. He recommended me to see a neurologist and have a hearing test. Thankfully, after cleaning out my ear for 2 hours, the audiologists found the cholesteatoma and referred me to another ENT. I had a CT scan today and follow up with the ENT next month to make plan for surgery, depending on the severity of it. I’m hoping that once its removed my hearing will be restored and I will have no more spasms in my face that cause me to look like I’m having a stroke. Best wishes to you all!

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