By Jude Green 2015
Living with a tumour in your head...
The site all about my brain tumour journey, with excerpts from others, useful advice and an active blog...
FEMALE 44yrs
Hardly any symptoms!
18th sept: Vision went "kaleidoscope" put it down to side effects of other meds I was on.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.