Hi, glad you decided to stop by again. It’s always good to see familiar names resurface, even if it’s just for a quick check-in. I know exactly what you mean about remembering people by their usernames and stories more than their real names — so many helped me too in ways they probably don’t even realize.

The FB groups have definitely gotten more active, but I still find value in this forum, especially because the old posts are like a living archive of everyone’s journeys. I hope you’re doing well since your 2017 diagnosis — it’s encouraging to see people come back years later and still be connected.

Hello everyone!

I was more active on this site years ago ... when Phyl was moderator...20 years ago had 1 cm rt AN removed via retrosigmoid at UMass Med Ctr, Worc MA. After a few years MRI showed continuing growth--15 years ago had Stereotactic Radiation at MGH ...and 3 year MRIs have showed tumor stable.  Have had tinnitus since AN diagnosed but t was more background noise. In April had my second Moderna booster and next day my head exploded with noise...most I hadn't experienced before...thumping, chirping, buzzing, electric shocks sounds, pinging, etc...so terribly loud for 3 wks could hardly sleep. Did lots of research...and called MGH--my doc, Dr Loeffler moved to FL last March ...office said it was not lkely the noise was from my AN. I got a new neurologist in Worc but she didn't see need for an MRI on my brain at this time. I will see a new Neurosurgeon for consult to ask about my tinnitus. The tinnitus has lessened now after 7 months ... but is still loud as it spikes at times.

Has anyone had exacerbated tinnitus after Covid shots? I have been in communication with Infectious disease expert who does not have an AN but did develop terrible tinnitus after Covid shot.  He is suggesting waiting for FDA approval of Novavax booster as the shot is made with sub unit protein and is not an mRNA vaccine.

Regards and best wishes to all AN survivors!

Grammy Mary

Mary, thank you for sharing your detailed history — you’ve clearly been through a lot over the years with both surgery and radiosurgery, and I’m glad to hear the AN has remained stable on follow-up imaging.

What you describe about the tinnitus worsening after the Moderna booster has been reported anecdotally by others, though the data is still very limited. Most large studies haven’t shown a consistent signal linking mRNA vaccines with new or worsening tinnitus, but individual cases like yours do get documented. It’s possible that immune or inflammatory responses triggered a temporary change in the auditory pathways, which could explain the sudden intensity you experienced. The fact that the symptoms have improved over several months is somewhat reassuring, even if they’re still bothersome.

Your plan to see a new neurosurgeon is sensible — not because the vaccine necessarily caused tumor regrowth, but to rule out any structural or pressure-related changes that could be contributing. An updated MRI would at least give peace of mind. As for future boosters, Novavax may be worth discussing with your physicians given its different mechanism, but I’d suggest making that decision together with your neurosurgeon or an otolaryngologist who has experience with tinnitus in AN patients.

You’re certainly not alone in this, and I hope others here who’ve had similar experiences after vaccination can share how things progressed for them.

Hi hnuck!

When I did a search on the forums, I found 1,303 posts on Stanford.

The way to do a search is to go to the Home page of the Forums (if your search doesn't start on the home page, you will not get the full results geometry dash scratch.  Then find the Search field on the top right side.  Type in "Stanford" and hit the 'Enter' button on your keyboard.  It should bring up about 14 pages of posts.

Thanks you for sharing!

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:)