Me Pre Op - Age 16

I was on the trampoline with my brother, bouncing about, laughing away like most happy go lucky twelve year olds do when I felt as if there was something ‘loose’ moving about in my right ear. It didn’t raise too many eyebrows and we weren’t particularly bothered about it at the time, several months later my hearing suddenly dropped dramatically in my right ear.

Even things as simple as talking to my friends in school began to pose a challenge as I struggled to keep up with conversations. This was around about the time I was meant to be sitting my higher exams and as you can imagine I was feeling apprehensive enough without the added stress of strange and sudden hearing loss!

On top of all this my balance began to deteriorate which resulted in me walking in to walls, I couldn’t walk in a straight line (and yes, I was stone cold sober!) This meant that the gymnastics became a challenge in school eventually the teachers thought it would be best I didn’t go on the trampoline. Rock climbing my favourite hobby became a huge challenge too. Something was wrong.

Now I had always had issues with my hearing, nothing major. And to be honest it wasn’t all bad, being able to whip out your hearing aid when the teacher is prattling on about some ancient battle in some distant country is a blessing! And the same can be said when your parents try and tell you to do the dishes or clean your bedroom! My hearing aid often ‘slips’ out when the conversation gets boring.

I had been getting seen by an Ear, Nose and Throat specialist since the age of five and despite telling her about all these issues (from the age of 12!) nothing was done. I was advised it was down to “Inner ear problems” and the prescribed course of treatment was to “deal with and get on with it”

Needless to say, at 12, and at 16 or at any age for that matter – the doctor is always right! Right?

Wrong!

Things had gotten to the stage where it was beginning to have a serious impact on my life and my parents were beginning to get worried. I had an upcoming appointment with the same ENT specialist and had decided to bring up my increasing concerns with her one more time.

When I arrived the ENT who had been seeing me since I was a little nipper was off sick, I was seen by a new consultant who had no background or prior knowledge of me whatsoever. I told him my symptoms and my concerns and I was booked in for an MRI scan within three weeks.

This doctor had done tests in half an hour that my regular ENT specialist couldn’t do in 11 years.

Unfortunately the results of the scan were not good. I had two brain tumour’s one of them (the bugger that was causing me problems!) was a whopping 4.2cm in diameter and was growing on the 8th cranial nerve, just touching the brain stem.

Needless to say I was terrified. I mean a brain tumour? That’s something you hear about on the news or read in the newspapers! It definitely couldn’t have been happening to me, could it?

Away from the doctors in the car outside I asked the question that had been running through my mind since I had found out about the tumour. “Am I going to die?”

For those of you who have never received information like this (and I sincerely hope that that is the vast majority of you) let me tell you how it hits.

It doesn’t sink in at first. In fact, I went back to classes that afternoon. I was there…physically but mentally I wasn’t, I was somewhere else.

Thankfully there wasn’t long to wait before I could see the specialists and get some answers.

The brain tumour was actually an Acoustic Neuroma, it was a big bugger and had to come out. They were going to do it and soon. I can’t remember much else about that first consultation to be honest; it was just a total blur.

It was not until after I had attended the neurosurgeon and ENT consultants at the Southern General that it started to sink in, the thought of having surgery on my head was terrifying! But it was something I was going to have to do.

I was seen in the December, got a scan in the January and was operated on the 2nd of April. The operation took twelve and a half hours and left me with Facial Palsy, multiple scars and a gold weight in my left eye…but they got the tumour out!

“What the F*** are you looking at?” – First words to my parents after waking up! (I also kept a diary which, considering pre-op I never said a swear word, has quite a few F***, B******, S**** in it!)

My initial thoughts after the surgery were “Thank god, I’m still here!” It took a long time for me to recover fully physically. I was so weak I couldn’t even open a bag of crisps (which was devastating because I love crisps!), I had lost over a stone in the three weeks that I was in hospital. It took me just under two weeks to be able to start walking small distances, the trauma to the head caused by the surgery made larger distances a challenge, and I had to use a wheelchair then move onto crutches.

Me 3 weeks post op

 Getting the tumour removed was only the physical part, getting over the emotional aspect of being diagnosed; going through the surgery and dealing with the aftermath would take much longer.

Emotionally I was fine, initially.

About a year ago it all started to get on top of me. I had lost my Auntie three months before getting diagnosed with the brain tumour, then the emotional rollercoaster of going through the surgery, then being diagnosed with Neurofibromatosis type 2 (I currently have eight tumours around my body) resulted in me feeling quite down, and being diagnosed with depression.

I tried counselling at the end of last year however, it just didn’t seem right for me, I only attended one session. I then started on anti-depressants and continue to take them once a day.

This time last year I felt like I was trapped in a downward spiral, but with the love and support of family and friends I can finally say I am on the road to a full and healthy recovery, both physically and emotionally!

And you can be too!

Me now that the surgery is all behind me (slight facial palsy and a gold weight in my eyelid)

“Don’t ask for an easier life, ask to be a stronger person…” – My favourite quote, the one that has kept me going.