Acoustic Neuroma

Mine is a very positive story.

I had tinnitus for a year in my left ear. My doctor said there was nothing to be done and I just learned to live with it. No big deal.

Then on 25th August 2007, I woke up and couldn't hear anything out of my left ear. I had just moved to Dubai and thought it might be the flight.

An ENT specialist did some hearing tests and explained it was nothing to do with the flights as it was an inner ear problem and put me on steroids. They didn't make any difference so I had a gas therapy- I think it's called carbogen - a mixture of oxygen and carbon dioxide. I had this for twelve hours - half an hour on, half an hour off.

The next day I woke up and could hear a bit. I was delighted as had resigned myself to no hearing! I then went to the doctor for a repeat hearing test. He said it was good, but he wanted to send me for an MRI scan just in case.

I went and when it was nearly finished they injected a dye in. Slightly concerned but thought nothing of it really as knew some of my hearing had come back. I didn't really think much more about it until the doctor's secretary rang to ask that I come in for the results a few days later.

Anyway, he told me there was a tumour, 3.2cm by 2.2cm that was usually benign and I had an appointment to see a neuro-surgeon in two days time. It was a big shock, obviously, but I felt like it would be OK and trusted that it was usually benign.

The neuro surgeon told me it was an acoustic neuroma and that it was too big for gamma knife. He explained the surgery to me and assured me that he was 99.9% certain it wasn't cancerous. He said it was a fairly big but routine operation but that I would need lots of time to recuperate. I told him I was going to come home to UK and he recommended a surgeon at the Wellington hospital to me.

I met with the surgeon who was brilliant. Very calm and kind and told me the risks - 50% chance of facial paralysis, 100% no hearing and what the operation would entail. My tumour was just a bit too big for gamma knife and this surgery had only been carried out for twenty years. This meant any side effects after that time weren't known and as I was only 29, surgery was the way to go. He thought he may have to leave a few mm in because of it's position but that would be OK. He explained it brilliantly and my paretns and I felt calm about the whole thing.

On Monday 15th October 2007 I had the surgery. I think it lasted about eight hours as he was able to remove the whole thing. Another surgeon carried out the first part of the operation and the surgeon I'd been recommended did the removal. Both are brilliant and I felt completely at ease and trusted them implicitly.

I only vaguely remember coming round about ten hours later. The surgeon said something (I'm sure he said a lot but I can't really remember!) Then my parents came in and I smiled. Perfect smile with no facial paralysis at all. What a massive relief.

I remember a bit of the night I spent in ICU and a bit of the next two days in my room. I have never experienced thirst like it!! I had morphine drips and IV and spinal drain (to catch any brain leaks!) Was fairly out of it though.

Had a pretty bad night on Tuesday with extra pain injections. My head felt like, well, a bashed in cannon ball really, but once the spinal drain came out things started getting better. I didn't think I would ever feel better as I really did feel rubbish. The surgeon said once the drain was out it would get better and he was right! Wednesday I got out of bed (threw up a bit but felt better after, and was only sick once more through the whole thing), Thursday I walked down the corridor with physio. Was a bit wobbly but OK.

Once the catheter was out the walking got easier and by Saturday I was eating, watching TV and walking upstairs. I was taking oral pain medication every four hours and to be honest, I was ready for them, but it was not blinding pain. I had the odd anti-sickness injection or pain injection in between but Saturday was the last injection. Sunday I had a blinding headache again but by the afternoon I felt much better and went outside (my dad wheelchaired me round a park! I could walk, but was just easily tired.)

It wasn't the best week of my life but I got better every day and went home the following Monday, just one week later, and was told to take just paracetamol for the pain (I had been having paracetamol and tramadol). I couldn't believe it! A nurse took the stitches out and because my head was still numb it wasn't painful in the least. Just a tiny bit weird really. The scar is all along my hair line behind my ear. They shaved a little bit of my hair in the area but the rest of my hair falls over it and even when I tie my hair back, you can't see it. It's incredible really. (Everyone I've shown it to says how neat and small it is.)

At home, I was easily tired and my neck hurt from the position I lay in, my thigh needed penicillin as the scar got infected (they removed some fat from my thigh to put behind the ear where the bone had been! Yuk!)but other than that, my headaches were like the normal ones you sometimes get for no real reason and I could talk on the phone a little bit more each day and my freinds waited until I was ready for visitors. That was after about five days of being home and it was only a few more before I could manage whole days of visits and trips out for lunch!

Two weeks later was my 30th birthday and I had a fairly sedate tea party! But the following weekend I was out clubbing (fairly sober as promised myself I would not self induce a headache like the ones I had the first few days of hospital), and felt great the next day.

It is now five weeks since the operation and I haven't taken paracetamol for about ten days. I've gotten used to being deaf (bonus is that I get great night's sleep) and my tinnitus is still here. My thigh is numb where the scar is and I can't cry in my left eye (new party trick), but there's drops to help and I'm swimming, jogging, going to yoga, dinners out, drinking a bit of wine and generally thinking life is ace. It really wasn't that bad for me and I feel really lucky. Back to Dubai to carry on with my break dancing lessons in a week or two!

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