How did people cope when they were first told they have an Acoustic Neuroma?

2 weeks ago I was told that my loss of hearing was caused by an AN. I am waiting to find out how large it is and therefore what the solution may be. I know I need to know this before I can work out what to do next but at the moment my head is just not in a good place. It doesn't help that mum is going through Chemo at the moment, so even though I know it is benign I am worrying.

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  • Hi we all cope in our own different ways. There is no right or wrong. Just remember there are thousands of us still here who coped, survived and are here to tell the tale. Kristyll x

  • It does come as a shock I know, like you my symptom was loss of hearing on the left but no other symptoms. I was a healthy 50, playing squash, drag racing my motorbike, running my motorcycle business in Cornwall. My GP fobbed me off when I questioned my hearing loss as it being due to my age. I was in BUPA so I made a private appointment with an ENT specialist, he sent me for a scan and bingo. I recall being on my way home from that appointment just worrying how I was going to tell my wife and sons. When it came to it as soon as I entered the house I was confronted with "What did he say" and I just blurted out "I've got a tumour in my ear!". That was 25 years ago. I wish you well with your surgery, its good that they found it isn't it?

  • It is a great shock to hear that you have a brain tumour and it takes a while simply to recover from the shock. However, the god news is (i) an AN isn't cancer (ii) it's almost always slow growing (iii) there is now a wide range of treatment available to suit different peoples needs and fears as well as different sizes and positions of the tumour. You may well have years to research your options - indeed I know many people who have undertaken "Watch and Wait" for over 10 years; seen no growth and now confidently expect to go to their graves without needing treatment. I had a treatment called FSR in 1998 - no treatment induced side effects and no additional loss of hearing. It suited me perfectly. Others I know have chosen from a range of surgical treatments as they didn't want any form of radio treatment. For a patient orientated guide to ANs and their treatments take a look at anworld.com/ There are also a number of groups on facebook as well as BANA in the UK or ANA in the USA, so join your association as well. They can help a lot.

  • Thanks so much for this. It does help to know others have been through it and survived. I am glad that I now have a reason for the deafness. Just need to wait to find out the next step now

    Thanks again

  • I had been suffering progressive deafness for 18 months but not being a big one for doctors just ignored it. My long suffering wife sent me to the doctors just after xmas this year. She sent me to boots for a hearing test (!) she then sent me for a hearing test and MRI scan. I feel the shock you felt when you got told you had one of these, I was in a bit of a state for a day or 2. I have been to see the consultant this week and hopefully will have the op in the summer.

    What helped me was to read as much stuff as absolutely possible on the subject (espcially the after stories). Once you see the worst that can happen and accept it then it makes it much better, I had already accepted that i would lose the hearing in 1 ear but i look at it that i will get a much better nights sleep when the missus is snoring !

  • it wasn't a shock to start with, as I'd researched sudden hearing loss and it had all pointed to that so it was a bit of a relief to start with, but then it suddenly hit me "my goodness I have a tumour and it's pressing on my brain stem"! it doesn't matter whether it's benign or cancerous I think you still have the same reaction " a tumour". I'm a little fed up as I'm still waiting to be treated despite being told last September that I'd be treated in November! Long story so won't go into that now! going for another MRI scan this week so we'll see what's happened then and hopefully get somewhere before long, waiting now to see the GK centre in Sheffield, Hope you get some answers soon and get your treatment quickly x

  • Hi I was told on tuesday ie 2 days ago, hadn't heard of AN till then. I am also haveing difficulties being decisive, somehow things that weren't important now are. There seems to have been a shift in my value system and it makes it hard to decide.

    I guess we have both got a lot to learn, hopefully reading others peaples experience will help to put things in perspective..

  • I found out a week ago, by letter. Kind of devastating news to receive by letter.

    I'd never heard of it before, looking it up on the internet gets you some facts but it's hard to process it all. I'm in the middle of selling my house and buying another but now wonder if it's sensible to carry on?

    Some say 'oh it's ok it's benign...' well it doesn't feel ok.

    I've got no idea when I get to see the consultant either....

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