Acoustic neuroma at 44

FEMALE 44yrs

Hardly any symptoms!

18th sept: Vision went "kaleidoscope" put it down to side effects of other meds I was on.

21st September: Vision goes again. Leaves me with a floater in my eye. This is weird.

22nd September: Went to GP. He said go to optician. I managed to see them same day. He said go to the eye hospital. (This is a bit scary now not knowing why) Eye hospital took photo's of my eye and a CT scan. They admitted me, but I still didn't know why. Until they woke me at 2am to tell me I had a tumour in my brain.

23rd September: MRI scan. (felt bit embarrassed as I pressed the buzzer after being in there for only about 30 seconds. I did go straight back in for the full 45 minutes. It was hard to think of anything – not knowing if you were going to live or die and it was so loud).

Results of MRI showed an Acoustic Neuroma about the size of a golf ball.

4th October: Surgical removal of neuroma.

Developed a CSF leak

17th October: Surgery for CSF and skin graft to plug my now deaf ear.I spent a month in hospital.

It is now almost 14 months on. I am not back at work as I was in the process of being made redundant – they kindly suspended my redundancy notice. I am not in a hurry to go back...

EYES: Doesn't blink nor fully close, , it is a lot better than initially post op. I used to wear a black eye patch when outside.Now its just drops and sunglasses in the day and lubrication at night.

EARS. Deaf in R ear. I’ve got a CROS hearing aid (2 months ago) - it works by picking up sounds from the side that does not have hearing and transmitting them to the ear that is able to hear. Bit of a nightmare in places like pubs and restaurants as it amplifies a lot of background sounds but useful in other situations like having a conversation as a passenger in a car. Find it hard to be deaf now when I wasn't before.

I do get a bit of noise in the dead ear but I think I am learning to tune out of the sound.

NUMB FACE. Initially awful, but improving. I still drink through a straw but my face looks symmetrical and moves a lot better than it did. Sometimes my words don’t sound quite right and I have to try and speak slowly.

I’ve used a Neuro 4 tropic stimulator machine – since just before Christmas last year I have been using it on my face for two hours a day on the motor point of the facial nerves.I'm smiling now, even if it's a bit sideways! I couldn't at the beginning.

BALANCE. Taken a while but it is pretty good now. Still go sideways if I am walking along and look up. Seem to be clumsier these days too, drop something several times a week, or turn round and hit something.

Things I have taken from all this that are positive.

Going out for first meal with family a month after I left hospital. My brother got me to send a video to my niece and nephew (4 and 6 years old) before they saw me so they didn’t get freaked out. I did a great pirate impression for them.

Achieving an 8 mile walk between Christmas and New year – was only supposed to be about 5 miles but a shortcut was closed. I didn't think I could do it, but I did.

Walking to the top of Stack Pollaidh in Scotland at the end of May using my new walking poles. Took a while, especially coming down but I felt a huge sense of achievement and I’m not sure I would have done it if I hadn’t had the AN. Had sunshine for whole two weeks on that holiday too. Having this has opened many doors.

My brother brining my niece and nephew over for visits in the school holidays – something that would not have happened if I was at work.

Seeing my mum and dad once a fortnight – again something that would not have happened if I was at work.

Getting the okay at the MRI scan 7 months post op.

Being alive, having a great husband and getting a second chance at life.

Hope you’ve read this far and try not to let it get you down. It is hard and 10-15years ago I might not have managed quite so well, having a more active social life, but now I'm content to be quiet and with friends on a small scale.