Cholesteatoma - Vertigo - Ear Infections - 30+ Years!

Found this website and thought I'd share my story with you. Unlike a traditional story, there's not yet an ending but I feel tantilisingly close to one.

It all began when I was probably 2 years old, my first memories of being ill are having terrible ear aches in my left ear. The sort that drill right into the side of your head and down your jaw. Throbbing pain. I remember the family Doctor back then in the late 1970's saying I was going to be an \"ears nose and throat\" child but might grow out of it. It was put down to \"catarrh\". I recall with each passing ear ache I would also get wooshing sounds in my bad ear, like the beating of my heart could be heard. I was given drops, advised to keep it clean, anitbiotics, penacillin...the usual.

By the time I was a teenager, I'd grown used to having an ear ache at least once every other month because of my \"catarrh\" and coped as best I could. I found warm hot water bottles helped soothe the pain. I eventually built up a strong resistance to it, and would only bother my GP about it if it lasted more than a week. Sometimes the ear aches came for no reason, other times after a viral infection like a cold. Always though, no matter what I caught, it ended up with an ear infection. By now, it regularily oozed watery wax when infected. It also smelt like cheesey feet. The family GP sympathised with my apparent heriditary weakness in that ear and advised I try to keep it dry, avoid getting it wet swimming etc.

I was about 19 or 20 when I noticed that my hearing in my bad ear was starting to fade. Initially I put it down to teenage life-style. Loud music, night clubs (which I also worked in), concerts...rock music etc! Because I spent many hours for many years working behind the bar in loud music venues I figured the partial hearing loss was due to customers shouting in my ear for the beer order. THe ear infections of my childhood were less severe now and I only suffered 4-6 ear infections a year which seemed quite good in comparison to my childhood.

I was working in an office and had just started dating my future wife when I was about 21 or 22. I remember it was the summer of Euro 96. I left the office to deliver a sack of mail to the DX office and had this weird feeling in my head like I was in a mild dream-like state. By the time I'd got back to the office I felt a bit queasy and figured I was about to get a migrane. I dimmed the lights, tried to relax, left work and met my girlfriend where were supposed to be going to a pub. I got to the pub, made my excuses and went to the Toilet where I promptly began throwing up. Obviously I looked very drunk to any onlookers because I couldn't stand up, my eyes were unfocussed and I was puking. I had discovered Vertigo. By the time I'd gotten to a GP I had been throwing up for about 2 days (it was a weekend). I couldn't stand unaided and found it only possible to communicate briefly with my eyes closed. Outside of this I was in a constant state of expecting, dreading, even hoping that I'd black out. I never did. The emergency GP was rather excited to have something of interest to deal with. She called in several colleagues whislt they gave me the \"bullet\" (anal sepository) of an anti sickness drug I later realised was Stemotil. The severe puking passed and I went from full-on spin cycle to high seas gale force 10 (like major sea sickness). I was off work for 6-7 weeks. They didn't belive me. The GP said I'd sufffered from \"Accute Labrynthitis\" or commonly \"Vertigo\". I was asked to pick which type of Vertigo I'd suffered from the medical text book at the GP as he explained that most GP's only cover this sort of thing for 30 mins at Med School. I was told there was no cure. I was told it would go of its own accord. It finally totally left me 3 months later. I was mentally scarred from this. My usual outgoing personality was marred. I no longer thoughtlessly went to a funfair, climed a ladder, looked up at the sky. It all came with \"what if\" warning thought.

3 years went by. My hearing was now a little worse but had evened out so I was used to having a \"good ear\" and a \"Bad ear\". I accepted that probably because of the years in the clubs that my hearing wasn't great in my bad left ear. I wondered if my episodes of hearing issues, infections and vertigo were connected. During one of my regular bi-monthly ear infections and GP visits I asked. \"Probably not\" I was told. I was handed the leaflet (which by now I could hand wright from memory) about how Otitis externa and Otitis interna worked and how I should keep my ear dry and blah blah blah. When my now Wife was due in at Stansted airport from a work trip and I had to go and collect her I'd just had a bad cold. I remember the familiar creeping feeling up the back of my neck that morning and a slight \"humming/dreamy\" feeling when walking earleir that day. The M11 motorway at Stansted was being widened at the time, no hard shoulder to pull over into. So when the road started to twist and bend in front of me, I closed one eye and tried to focus on getting to the airport. My wife found me in the end. I'd made it to the car park barriers where I'd flung open the car door and found a nice straight lamp-post to hold onto whilst the world spun around me. Covered in puke, crying, frightened and desperate my wife drove me straight to A&E. They whisked me through the system (suspecting a Brain Hemorage). It was only when in between puking I mentioned my previous vertigo experience that the attending Doctor gave me what felt like a Horse-size shot in the leg. Within an hour the world was only wobbling. He'd given me a whacking great jab of stemotil. \"You have vertigo\" was the diagnosis. \"Why\" I asked. \"You just get it\" I was told. That bout then returned a few days later with a vengance, this time I was already at home and signed off work so my GP gave me Stemotil tablets and we also tried Cyclizine. It took 8 weeks before I was able to get out of bed that time. THe pressure on my Wife and family was enourmous. My employer at that time was scepticle to say the least. They sent me to the work GP who also confirmed that Vertigo was just one of those things and not brought on by \"anything specific\". I was not really reassured with the affirmation that it was \"rare in someone so young, especially as severe as that\". My life changed forever from that second bout. I began to live in fear of Vertigo. I avoided all possible culprits for it. Previously an active person, I was now badly over weight. Negative and grumpy. I'm amazed my wife married me and even more amazed she wanted start a family with me.

I had times when I could almost forget Vertigo. Usually summer months I found my ear problems would be at a minimum. I'd made a connection bewtween infection and Vertigo and so now, even the slightest sign of an ear infection, even the itchy ear, I'd learned to go straight to the GP.

I was burying my step-nan and my poor wife had also lost her nan the January I was recovering from my 3rd serious bout of Vertigo which had wiped out Christmas and New Years for the family. It had followed flu and I was unsuprised this time, less fearful and more angry. I remember being supported by some undertakers whislt I in turn tried to carry my step-nans coffin. It was probably my lowest point. I considered paying to have the labrynth and hearing completely removed but read that even this was no guarantee of a resolve. The internet was in daily commen use by now and much better quality information available on it. I discovered a thing called a Cholesteatoma and read the symptoms of others and made a connection. \"I bet thats what I 've got!!\". The next ear infection a month later, I asked the GP to refer me to an ENT specialist. I was told point blank that there was no reason to be reffered. Request denied.

So, my children were born. A New light in my life. Ear aches and infections came and went. Mild vertigo after any type of Cold or Flu was sufferable versus the episodes of the past. Had I learnt to cope at last? Then, after persistent tummy aches and pain with a lump, I found myself reciovering from an emergency operation on an Umbilical Hernia. Having kept the ward awake all night with my snoring and episodes of not breathing, a ward assistant mentioned that I might want to get my sleep apnea sorted out. \"Sleep what?\". It seemed to get worse from then. BEfore long I could hardly keep my eyes open in the day. I'd wake in pools of sweat in the night, I even awoke to discover I'd wet myself. My wife had enough issues with a small baby and a 3 year old, without having to deal with a husband who was turning into a baby too! I went to the GP. \"You're morbidly obese, your blood pressure is through the roof and you now have sleep Apnea as a result...loose weight fast\". So, with a fresh new fear of not seeing my kids grow up (either a heart attack looming or falling asleep at the wheel was going to kill me) I bucked up my ideas and lost the weight. I began swimming again. The ear infections came back with a vengance. I mentioned this to my supportive GP (during another request for antibiotics) and he said \"if you get one more infection in the next few weeks, we need to take a closer look\". Sure enough, I had a real good one. Leaking brown smelly fluid, sore ear, and if I held my nose and blew I could make a really interesting sound out my ear. \"Must be perforated this time\" I thought. Had to see an emergency GP. An American lady. I owe her the next chapter of my life. \"You're going to see an ENT specialist. Your medical history is appaling. How can you have had this many ear related issues and nobody ever reffered you?!?!?!\". I was booked for my ENT specialist.

It was Halloween in 2009. I saw him at the local hospital and he took a good long look. He did what I later found out was called a microsuction and asked me to come back in 1 year. My heart sank. \"Another year of this Cr@p.\". However, for the first time in years, my hearing started to improve in my bad ear. That winter I had only 3 or 4 ear infections and all minor. Then by the summer, I'd had hardly any. I'd almost forgot that I was due to go back to the ENT specialist in October 2010 when the week before...another bad ear infection, hot on the tails of a heavy cold. Squeking noises if I held my nose again and of course the smelly fluid and pain. \"You need a Scan\". \"AT LAST\" I thought. I had my scan very quickly for NHS (a few weeks I think), then I got a letter saying I'd need to see anotehr ENT specialist at a different hospital. THings began to move at last. Christmas came and went and I was booked in to see the specialist in Feb this year. He took a look at the scan and announced I had a large Cholesteatoma. He seemed a bit supprised by the BIG SMILE on my face. I explained.

The operation was last week. I've yet to talk with the surgeon. I'm told I was under for over 9 hours as it turned out to be extensive. Currently my ear leaks blood and brown stuff. It hurts like hell and I feel a little unsteady. I have severe Titinus at the moment but I've had that pretty much to one degree or another the last 30 years so am quite patient with it. I don't know yet If I'll ever hear again out of my bad ear. I don't know if they got the whole Cholesteatoma. I'm hopeful. Most of all I'm elated. At last, after 30+ years of sadness and life changing behaviour because of my ears, I feel I finally have a reason..a cause..for my problem. I'm hoping that Vertigo is gone from my life forever. I'm frightened to say it or even think it in case it hears me and comes back to get me...but for the first time I'm hopeful.

If you have long term ear problems. Don't take no for an answer. It turns out that this is very rare. Most GP's won't suspect it. It's not really their fault but I'm dissapointed that not enough is known about it at entry level so that it seems not to be even considered. If any of this is familiar to you and you are unsure, I urge you to push to see an ENT specialist. I'm not cured yet...but for the first time in my life I feel like I might be on the winning side with this.

God Bless. Thanks for reading.

Lee.

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