Sorry to read of your diagnosis ,
I had an acoustic neuroma removed less 11 months ago and really just wanted to join this forum to share my experience of diagnosis, the horrid decision process between surgery or radiation and finally my surgery and life post surgery!!!!!
I went and met with several surgeons - all of whom gave me slightly differing opinions, one recommended gamma knife, one surgery, one watch and wait! but within those consultations certain things jumped out at me that were personal to what i wanted - for example i am very brave when i have to be but am a worrier before the fact, therefore for me personally the thought of regular MRI's i knew would weigh me down as would radiation as there would be no actual closure - as the surgeon said to me, some people can live with knowing the tumour is still in there and others can't but on the other hand it is less invasive. the consultant who recommended surgery told me there was a risk to my hearing and to my facial nerve but there would be closure - it was like aaaaaarrrrggghhhhh!
I agonised over wether to have gamma knife or surgery - i remember sitting in a pub with my friend and we would talk around the pros and cons and i would say "yep, i've decided - radiation!" then 2 seconds later say "No i've changed my mind i want surgery!" and believe me this went on like this for many days!
But, the other posts i read are right, you talk it over with your friends , family and in your own head and for a while go round in circles but then you do realise that one option has more pro's than con's (which ever option fits your life) and you do get to a point when you know you have made a decision.
In the end I decided that finding the best surgeon, with the most experience and then gaining his opinion was necessary. I found Prof. Sammi at the INI in Hanover, Germany who specialises in AN and arranged to fly out having sent all my med notes for a consultation. He was fantastic and recommended surgery over radiation in his opinion. He told me that i would probly lose my hearing but he would not touch my facial nerve (i asked how he could be so sure - he replied "because i have done 3,500 of these operations). I left there feeling confident in his ability which gave me confidence in making a decision.
In the end i sat and thought i cannot see into the future and know the result, all i can do is make a decision based on the things that were important to me (personally that my facial nerve was not damaged) and act on that information. That meant to have my surgery at the INI in Hanover, Germany.
I did lose my hearing in my left ear (as predicted) but he never touched my facial nerve!!! i woke and could move my face like normal. It was actually a very liberating experience - facing your fears, making a decision and being brave.
I was in the hospital for 2 weeks, stayed another week in a hotel in hanover and returned to UK by train. To put into perspective how good i felt afterwards - my husband and 2 kids (10 & 7) only came out for the third week once i was discharged (as i refused to disrupt the children - kept them in school with dad at home to normalise as much as possible) and in that third week we visited Hanover zoo twice!
I flew to Jamaica for a holiday 3months and 2 days after my surgery, was back driving after 3 months (running the kids everywhere) and was back in the gym and tai boxing after 5 months.
i know not everybody has such a positive story but i just want to say that life after AN whether surgery or radiation can go well and it is scary but you also gain a real sense of achievement that you have come through this and out the other side.
Apologies that i have rambled on but i was so happy to find this forum and i wish you all the best.
