When was surgery decided?

[SissyO]

I was diagnosed with AN in Jan of this year. I started having numbness/tingling, losing my balance walking, horrible headaches which lead to this discovery. I just had check of my vocal cords because I have a lot of left side neck pain and neurosurgeon thought maybe there was some damage. My hearing is fine but having some blurry vision occasionally. My AN is just 13mm but is causing these issues. The neurosurgeon is doing a repeat MRI end of April to see if it has grown. I'm all over the place in my thoughts and emotions. I want this gone and I feel so out of sorts. Has anyone with these symptoms elected for surgery? Also, when did you (if you did) tell friends and co-workers? Thank you all in advance.

[flappers]

Hi SissyO,

I was diagnosed with a same size acoustic neuroma in Sept 2020, and could have written pretty much the same as you, although I had single sided screaming tinnitus and some hearing loss too. Like you I was desperate for it to be removed. However, like you, I was advised ( rightly) to wait for a 6 month scan to see taste of growth. In that time I really attended to myself, and found out a lot more about the benefits and outcomes of different treatment options. But still it was terrifying! In 6 months it showed less than a mm in growth ( so none really) and in the following year I had less symptoms, and I learnt that many were actually the result of stress and other things, some absolutely directly linked to the benign tumour and it’s position. I am glad I waited as although mine did then grow in the following year ( and many don’t at all) I then understood that radiosurgery was a really good option. Despite being told early on I wasnt a candidate for it, and it was better to leave it than remove it ( the do least harm approach) by the time it has grown to 25mm I was actually offered either surgery or cyberknife. I had three sessions back in June 2022, and I’m so glad I avoided surgery. Whilst it is fantastic they can in part be removed, it is a very invasive operation and can cause some other unwanted side effects. The main thing is to talk to both neurosurgeon and neuro oncologist who does the cyberknife or gamma knife to see if treatment is 1. Needed at all, 2, would give the best outcomes. And what the impact of either would be, They are nearly always very slow if at all growing, they will NOT kill us, et can adapt to symptoms ( and do) and improve balance with walking lots and vestibular therapy ( yoga/Pilates/tai chi helped sort mine out) And time. I no longer think about it much at all. You are at the scariest stage, but there are lots of options and you’ll probably find the UK consultants don’t rush to surgery as much as USA. Talk to others who have had treatment, know that you’re not alone, find ways to calm and soothe yourself. Google is not your friend but in the uk we have support groups and I guess they’ll be similar. I was same age as you when diagnosed, so 57 now, I still lead a very full busy ( with some naps!!) life dancing, working, looking after my granddaughter etc… breathe, don’t panic or rush to surgery, find a team you trust who will look at all options, and know you will be ok 💐 Lin

[whitefishbay in reply to flappers]

Health Unlocked is such supportive website. Best of luck. (My AN is at watch and wait stage.

[flappers]

PS, to answer your question, I waited until I really had my head around what an acoustic neuroma actually was, the likely treatment path etc before I told work colleagues and some friends/family, others I told right away, but that was because I just like to calmly control the narrative and didn’t want them to see my panic/or see theirs!! If you work in a supportive environment or just need to share, then go for it. You’ll be needing kindness and support whilst you navigate the unknown, but I just really want you to know you really will adjust and be ok. I didn’t believe it either, but here I am, a few years later, saying the same to you x

[SissyO]

Thank you so much for your reply it has given me so much peace and calm, that I desperately needed.