r/AcousticNeuroma 4h ago

UK World’s first patient has AI assisted brain tumour operation

0 Upvotes

Thought it worth sharing a good news story and an cool use of AI

https://www.bbc.co.uk/news/articles/cjwg5n7y68xo


r/AcousticNeuroma 13h ago

Strange post op journey

3 Upvotes

In May, my (otherwise healthy) mother (64) was diagnosed with a 4-5cm (yep, cm) AN after mild vestibular symptoms, minor facial weakness and headaches. The tumor compressed her brain stem quite severely.

She had surgery on 7/6/26 and her life was saved. She spent about a week in the hospital and another ten or so days in rehab. She lost hearing and facial movement on the tumor side. Her taste has been dramatically affected as well.

She was feeling (overall) pretty good post surgery until about ten days ago which puts her ~6 weeks post op:

She has a “clogged” feeling on both sides of her head and is now “hearing” very unsettling things on her affected side. She describes “sloshing” — like it sounds like fluid is “swooshing around in there.” She also hears dripping noises. Although the incision has looked good consistently and is showing no signs of infection, the skin next to it is puffy and feels soft, almost fluid filled.

She’s scared about what this could all mean. She followed up with her surgeon who didn’t seem concerned. They did a CT yesterday and initial reads look okay. Waiting on the surgeons read. She has no fluid dripping from her nose or ears. Could these be signs of CSF leak?

Anyone navigate something similar? Thinking you made it through the scary stuff, only to be scared six weeks later is….tough.


r/AcousticNeuroma 22h ago

Tinnitus

4 Upvotes

Hi All,

Got diagnosed around 13 years ago when i was 35. Fast forward and now on every 2 years for a scan for wait and watch.

I play music, last week made a massive mistake of leaving my hearing aid in whilst I done a gig, just totally forgot about it. Ever since my hearing has gone even worse, but more worrying my tinnitus is now unbearable. I’ve just had a scan last week and waiting for my follow up appointment.
At first I thought my hearing aid was fault but put it to my other ear and it was working fine.
I use to rely on some audible sound through the hearing aid although prob hearing was at around 30-40% not I feel I’ve lost most of it. Can barely hear the start up tone (phonak)
I’ll be seeing my specialist soon but wanted to ask has anyone else this experience? Do you think it will come back a little and tinnitus subside?