I’ve just been diagnosed with AN and am now waiting for my local hospital’s neurologist team to contact me. My AN is pea sized and I am suffering moderate hearing loss and tinnitus. No vertigo yet. I’m not sure I can mentally cope with watch and wait which my consultant said would be the most likely advice. I’m scared and depressed. My life is spent coaching tennis so vertigo would be a nightmare. Has anyone opted for the operation when the the AN is small to try and save as much hearing etc as possible. I understand there are complications after surgery, especially dizziness. Has anyone got over this completely? Or is the op just going to make it all much worse. I’m really scared and confused. Just want the tumour gone. I’m thinking of asking to go to a hospital that specialises in AN. I understand there are a few but not sure which one is best. Any advice would be so appreciated.
watch and wait: I’ve just been... - Acoustic Neuroma ...
watch and wait
It’s such a scary time and I totally understand your fear and wish to just get the little squatter OUT. I felt exactly the same when I was diagnosed in 2020, with a 12mm AN. Like you, had terrible one sided tinnitus and some hearing loss. No vertigo but felt vulnerable and a bit wonky. I was, like you, terrified of getting vertigo. Over the first year, I started to better adapt and really got used to the tinnitus, and understood better how to live alongside my unwanted guest, and understood the ‘do no harmI’ approach is the very best one. Surgery should only be done if the impact of not doing it is greater than doing it. Please do join a face to face group or get in touch with the Brainstrust for peer support. Honestly, even though mine did double in size and I did need treatment in the end, this is unusual and yours could most likely never increase in size or cause you any more problems. And you’ll adapt to any you’re getting now. There is help for the symptoms too, hearing aid, vestibular physio if you do get balance issues, but I suspect you won’t. I’ve never had the vertigo and mostly any symptoms were best managed by looking after myself, being kind to myself, and staying fit and healthy. Weekly hypnotherapy with the brains trust helped with the anxiety of what might happen around treatment options when it came to that stage for me. Focussing on what you can do to adapt, rather than thinking you might need to battle against those who REALLY know the best treatment paths ( of which monitoring/w and w is a truly valid one) will be key. You’re going to be fine, these things will NOT kill you, and you can discuss your fears about vertigo with the team and hopefully they will put your mind at rest. Keep being active and know you’re not alone. Loads of us are living brilliant lives with ANs, and most never need any treatment. You’re at the worst stage, it’s awful. But you’ll feel better in time and adapt, Lin x
PS which area do you live in?
Thank you so much for your reply. All your advice and words of encouragement and comfort are really appreciated. Watch and wait sounds mentally torturous but if it’s advised by the Team then that’s what I’ll do. I really just want to zap the horrid thing that has put paid to my hearing but at the same time I’m desperate not to do my ear any more harm than has already been done. I live in the South Hams, Devon, where my days are filled with playing tennis, and coaching tennis, for free, to anyone and everyone, able and not so able, who would never have the opportunity or confidence to play the game. Hence I am desperate not to lose my balance.
That’s great advice you’ve received from Flappers. I was diagnosed in November 24 and saw neurosurgeon mid December . My AN is 22 mm so to me it was a “monster “ but the team still recommended WW despite the size as like you my symptoms are moderate 40% hearing loss and tinnitus and it depends on location , symptoms etc . Mine is touching my brain stem but not compressing significantly. It’s very daunting getting used to an unwanted visitor but Im managing to continue “normal” life at present . I’ve flown earlier this year too and that was fine, I walk and do yoga , although i have noticed head down positions do make me a little dizzy. I am trialling a hearing aid at present and it’s helping in crowded situations as the hearing loss is low frequency so more difficult to manage apparently. . Keep positive there’s lots of support out there and the BANA is worth joining too lots of support events both virtual and face to face . Keep up your great tennis coaching if I lived closer I’d be there 👍
Thank you so much for all your help and advice. I think my hearing loss is low frequency and I am going to ask what hearing aid would be best when I get to meet the Team. I have read that Yoga can be beneficial so, although I am as supple as a concrete block, I shall give it a go. It was also good to hear that you have managed to take a flight ok as I have a 9 hour flight in the summer: I was thinking of purchasing noise reducing ear phones as I think the drone of the aeroplanes engines will make my tinnitus go mad. I have joined BANA and will put my name down for one of their virtual meetings. It would have been lovely to have you at my tennis sessions, and I wish you all the very best with your AN.
I hear you ( pardon the pun)
What you offer to others through your tennis coaching is fabulous, and there is no reason at all why that won’t continue to be the case. In our little AN club we have mountain climbers, marathon runners, horse riders, etc. ( I’m more of a yoga/sauna/nice stroll on the beach type!!) Remember often those who are in support groups are those who are early diagnosed like yourself, or the small minority who have ongoing difficulties. So many are just getting on with life without giving it much thought as time goes in on. As an active sportsman, you’ll carry on with the active things you love to do. You’ll be well within the size range to be offered radiosurgery, IF it continues to grow, which they’ll assess with a 6 month, then yearly scans most likely… and that is a non invasive intervention which is 95% fully successful in stopping any growth. Many just stop on their own too. But you’re a long way off needing that, if it’s needed at all. Please feel free to message me if you need to talk with someone who truly understands the horror of the diagnosis, and is 4 years further down the line! I thought I’d never adapt to the ‘gifts’ it brings but I did. And having little hearing on one side means I can sleep with my good ear on the pillow so I can’t hear my darling husband snoring or the cat meowing to be fed . This is a definite advantage!!. Initially, that first year, it was the last thing I thought about and the first when waking up, but honestly, I almost feel like it’s become a positive in my life… particularly because I have taken early semi retirement and only do the work and social things I truly want to! But right now, you’re in the hardest stage. Breathe, look at the sea, do things that soothe you, and distract you and make you smile again. I am not sure which the nearest specialist unit to you, might be worth asking on the Facebook group British Acoustic Neuroma Support Group. if anyone knows best place in your area? Take care, and let know how you get on, Lin
It is wonderful to hear that you have accepted and learned to live with your AN. Yes, it is the last thing I think of when I switch off the light, and the first thing I think of when the radio alarm comes on in the morning, and if I'm lying on my good ear I can only just hear it. I have joined BANA and will contact them to see if they know who my nearest specialist unit is. It would be lovely to keep in touch as you have been so supportive and it really is appreciated.
Hi, I was diagnosed with a 9mm AN back in 2017 at the age of 38. Watch and Wait was recommended with yearly scans. In the first 6 years, my AN remains unchanged. I was put on two yearly, and I am due an MRI in May. I have tinnitus and hearing loss and some occasional balance issues. I continue to work full time as a teacher, cycle with no balance issues, and walk regularly. I can remember being scared when first diagnosed but tend to get anxious when waiting for MRI results. Other than this it doesn't get in the way of things. I hope this helps. Best Wishes Damian
Hi, you’ve had lots and lots of good advice so I’ll try to keep this short (but I bet I don’t). The people on here understand how you feel and are always willing to help. I’ve posted 3/4 times and always had a useful response.
I was diagnosed in Sept 2023 and my AN is 8mmx5mmx5mm.
I went on watch and wait and was scanned a year later. There was no change in size and appearance and I was told this is ‘what usually happens’. My symptoms of tinnitus and mild hearing loss have not changed but I have noticed that the more anxious I am the worse I perceive them to be. My balance is totally fine and I still do a physical job, run and exercise like I used too all while dealing with two young kids.
I was feeling exactly as you describe when I was diagnosed but things do get easier, you will adapt to your symptoms and any changes are likely to be very slow to manifest. I’ve adapted pretty well but I still have some downs. They are mostly linked to tiredness (shift work and the kids) and anxiety when I let my worries get the better of me so I know now more than ever that self care is important (sleep well, eat well, exercise etc etc).
So, try not to panic. The likelihood is that not much will change and if it does you’ll be well looked after. Don’t be harsh on yourself and if you are fit and active try to stay that way. Staying fit and doing things I enjoy help me a lot and allow me focus on the good things in life.
The last thing, ask questions of the experts when you get a chance. You might be waiting a while between appointments so make the most of them. I luckily had a few private consultations and I wrote down everything I wanted to know including all the practicalities of how to get help if I need it in between appointments. Having that ‘back up plan’ should I need it helped me to settle a bit.
Take care and try to remember - you will adapt and things will get better.
Thank you so much. Your advice is so helpful. It is lovely to know you are still able to run and keep fit, along with doing your physical job. No doubt your kids keep you on your toes too. Your advice to ask the experts lots of questions, along with what I should do if I’m concerned between visits is really helpful. I have always kept fit and eaten healthily. Now I’m beating myself up as to what I have done to cause this NA. I suppose it’s all part of coming to terms with it.
It is all part and parcel of coming to terms with it. From what I know there’s no likely cause and these things just happen. My first two years have been a bit of an emotional rollercoaster but I’m still here and still pretty much the same as I was before I had any diagnosis.
I am convinced dealing with these things (especially on watch and wait) is a mental challenge so do whatever you can to ease your anxiety and it’ll help you hugely.
emotional rollercoaster sums it up brilliantly. I think I get to a point where I’m hyperventilating, which in turn makes me a bit light headed, which then makes me panic that my symptoms are getting worse. I’ve never done yoga before but I’ve emailed a yoga instructor hoping this might help. Your advice and encouragement has really helped. Thank you.
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