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