Hi everyone,
 
I am new to this forum, my name is Simone, 37 years old and I an Austrian living in the UK. I already am on my AN journey since the beginning of 2020.
 
Here is a short recap:
 
Diagnosed in January 2020 with right side AN after my hearing got worse and worse
Decided to watch and wait, the size was ~2cm
In April of 2020 my symptoms like dizziness, headaches, and a feeling I can only describe as my head feeling like a pressure cooker whenever I stood up from a sitting/lying position and I thought my head is going to ‘explode’ any minute – turned out my tumour was fast growing and was ~5cm by then.
Translab surgery in May 2020 – in this surgery the surgeons decided to leave a tiny bit of residual tumour which was clinging onto the facial nerve, as the chance of this growing again was minimal.
 
However:
My control MRI in 2023 showed it has actually started to regrow so the decision was made to do Gamma Knife radiosurgery for this little bit of leftover tumour which was 0.4cm in size
Gamma Knife in July 2023
 
I am aware the nuked tumour can swell a bit after radiosurgery, which it initially did. But 2 years on now it got progressively bigger. I just got my result back from an MRI I had in August this year as my symptoms like the dizziness and facial numbness get worse.
 
And the progression since 2023 has been as follows:
 
0.4cm in 2023 at gamma knife appointment
0.9cm in 2024 at control MRI
1.1cm in February 2025
1.2cm in August 2025
 
 
 
I have yet to hear back from my consultant, but as far as I am aware this is too much of an increase for it to be post-radiation swelling. When I had my last discussion with my surgeon he advised if it continues to grow and it turns out it is actual growth, I would have to undergo surgery again (as the UK only does Gamma Knife treatment once).
 
My worry is that this time around they - again - have to leave some leftover tumour on my facial nerve still to not ruin it. If it then STILL doesn’t stop, I don’t know if I am ok with the thought of having surgery every few years...
 
To make a long story short, I am curious if anybody had this experience before were the gamma knife didn’t work? And what were the next steps? I can’t seem to find a lot of literature on the web.

Thank you for reading this!

Simone

That's very good news Stella! I'm going for third MRI, 3 years post GK. They gave me annual MRI plan for 5 years post GK. So far my AN is stable and reducing a little. Looking forward to having a break on MRI like yours in the near future:)

Hi all,

I’m six months postop with very little paralysis progress. Emotionally and mentally, it’s time for me to start looking for the best possible reanimation surgery so that I can move forward with my life.

My first question is how long did most of you wait to get facial reanimation? I’ve tried my best to let my body heal and done everything from Acupuncture, massage, facial physical therapy, cranial, sacral, massage, red light therapy, rest, exercise, a healthy diet with zero alcohol or caffeine and meditation and yet here I am. I’ve done my best.

My second question is, can you please share any recommendations for the best possible surgeon. I will go anywhere geographically in the United States and I will pay whatever it takes to get this done right. I am seeing the facial plastics person at my home state where I had my AN surgery done but I now have trust issues here becuase of my outcome and want to loll around.

Thank you for any help, support and guidance. I appreciate it in advance. 🙏🏻

This was probably the earliest symptom that started impacting me, about three years before mine was discovered.  I also fell into the same boat thinking ADHD related, though being in my forties, I found myself asking "why now?" It was probably the most mysterious and vexing symptom for me for a long time - I had blood/hormone/vitamin panels all run, monitored sleep, etc.  Most of my symptoms were disguised by the fact that I document live music from within the pit 3-5 nights a week, so dehydration, interrupted sleep patterns, exposure to loud music and occasional kicks or punches to the face seemed more likely causes for brain fog, chronic fatigue, lightheadedness, loss of hearing (ironically, my suggesting an MRI to my doctor just to rule out undiagnosed concussions was how we found it relatively early (mine is specifically a VS at 15mm).  I've found various things can influence it, such as barometric pressure or stress - and sometimes simply taking asprin with ibuprophen provides greater clarity than adderall - taking meticulous notes on a variety of factors helps me identify potential triggers and ways to mitigate.

Thats great news! And very interesting on the Keytruda too! I read this today also re an immune therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8162073/run 3

Thanks for sharing that link! Really helpful to see more info on immune therapy and its potential effects. It’s encouraging to know there are positive cases out there.