I was diagnosed with AN on my left on December 10. I had read the MRI myself on the 8th, so I was 'ready' for the diagnosis on the 10th. My ENT who ordered the MRI said he was going to pass my information on to UMD because they don't treat AN. It is hard for me to understand the size of the tumor because the MRI lists 2 dimensions, but the ENT said it was "moderately large" and my guess right now with the two dimensions is that it's about 2.9 cm. The part by my brain stem is 17.6 mm x 15.1 mm x 15.5 mm craniocaudal and the part in my Intra canalicular component is 11 mm x 7 mm x 8 mm. Based off what I've read online because it's in my IAC and by my brain stem it is considered large, and so I added the two largest dimensions together to get about 2.9cm. would be interested if someone thinks I'm misunderstanding.

I have mild hearing loss - 80% word recognition on the AN side
I have tinnitus - which has been worse lately in general (why I went to the ENT) and has been much worse this week... do we think this is due to the increased stress of diagnosis. Or is there any world where I have a fast growing tumor?

I have talked to UMD, John Hopkins, and UCSD trying to get an appointment and am in a waiting pattern with them all.
UMD: waiting for someone to call me back because the receptionist couldn't schedule me before March, and she wanted to get me in sooner
John Hopkins: waiting for them to verify all my information
UCSD: waiting for them the verify my information.

I've uploaded my mri images and results to all of them, but it's been really stressful not having more details about my situation. Best I can do is get online and read about AN and about other peoples situations.  Here are some of my concerns:

Hearing preservation: From what I read it sounds like with a large tumor hearing preservation isn't very likely despite me having decent hearing in my AN side and that really bums me out.

Balance: I feel like most sites talking about AN focus on the hearing preservation/loss and the potential for facial paralysis, but it seems like the majority of personal stories I read talk about balance problems indefinitely. The majority of my hobbies are active (volleyball, pickleball, bouldering, hiking) and it seems like the chances of having balance problems are high which I'm betting means several of my hobbies are out, or at least minimized (probably can't play on my volleyball team if I might struggle with balance at any moment, bouldering sounds unsafe with balance issues, hiking alone is probably out of the question and hiking any treacherous/narrows paths also seems problematic). I struggle with depression and the main ways I am able to combat that is through my active hobbies. While I understand that I can probably still be active after the surgery I am worried about a) the time it will take before I can be super active again, and b) worried that all my activities will have to be new activities because my current ones aren't safe.

Dying during surgery: probably an unrealistic concern, nevertheless...

Future Family: My husband and I would like to have kids one day, and I turn 35 in a few months. It seems like I probably need to have surgery and recover before that is even an option, and that adding continued pressure to the timeline of being able to carry my own kids is scary.

Do I have a fast growing tumor: With my tinnitus being worse my hearing feels like it's getting worse, which is making me stressed than maybe I have a fast growing tumor. Maybe that doesn't matter because of the likelyhood of me loosing my hearing anyway, but I don't know.

 
That's all for now. If anyone has read this entire thing - thank you! If anyone has suggestions on how/who I can meet with sooner than later to get some of my many questions answered I would appreciate the recommendation.

I couldn't be happier with my experience at John's Hopkins in Baltimore.   But I didn't do the radiation.  I had the surgery six months ago on May 13th.   My neurosurgeon was Dr. Xu.  And he was assisted by Dr. Chen.   Honestly I was always wanting the surgery instead of the radiation and never once felt like anyone there tried to change my mind and go a different route.  Now I had a second opinion appointment early on in my journey at Hershey Medical center, and the entire time all they did was push for me to do the radiation.  I am located about halfway between these two well known and reputable places and it was the fact that Hopkins listened to me instead of trying to push me in a different direction that made my decision to go with Hopkins easier.  For background information, I am 56, and have always been active and in good health, which I think contributed greatly to a very short recovery time.  Just this past Thursday I participated in our local Turkey Trot 5k and had my fastest time since 2018, and that was just 6 months after major surgery.  I can honestly say I feel better than I have in years. 

I put half an aspirin in my water bottle. Or I take 1 mg valium.  I stay well hydrated and use a sleep mask if long haul. I have also used noise reduction earplugs in the past.

Since last posting on this forum I have had treatment.
Which was in April 2025. Cyberknife in Munchen.

Around treament my Tumor was 24 by 15mm
Cyberknife session was 30 min. With a facemark. Which looks to me like a far more comfortable solution than those screwing frames.

Just had my 6 months scan and appointment with my neurologist in Munich.
And so far Necrosis is visible on the MRI and the tumor has shrunk about 10 to 15% in size.
Which is according to the neurologist a strong response to treatment and positive results.
I couldn't agree more. No real strong side effects so far.
First few months a bit of a pulsating feeling in my head around the area where the tumor is.
But no issues with gait or other things.

Balance was not bad before treatment but has improved.
Neck flexibility has improved. (wasn´t aware of how much that actually was impacted before)
hearing before treatment was impacted. High en some lower frequencies were impacted. word recognition was not as good as it should be.
After treatment: last month there has been improvement. Where some lower frequencies came back. And word recognition has gone up.

All in all. I am happy I did my own research and didn´t trust the first neurologist I talked to.
I would say the advice I got was for the majority pointing towards surgery and at least debulking of tumor.
But reading the research papers told me a different story. Where it is also very important to understand the volume of the tumor and not base advice on just the diameter.
The neurologist in Munich understood I was well informed and read many papers. He was the first to have a full open conversation on what are the possibilities. And he said that whatever I do it is my choice but that he was very certain that he could treat me with the cyberknife machine with good outcome. If he were in my shoes that he would go for that option before considering surgery. Because this surgery is major.
Maybe he was selling me his solution, who knows. But I also keep in mind that these clinics have to keep numbers on a certain level to be allowed to treat.

So far so good. Up to next year!
For now I feel like I have my future back!

Sorry to hear about your issue.   I don't have experience with pain, I was lucky enough to actually be in less pain after surgery than before.  But the swelling and sleeping thing I have a question about.  Did you try a different bed or pillow?  I noticed after my surgery that I was having problems sleeping, and although it didn't hurt I did have swelling that felt weird.  For me a new pillow and a change in sleeping position seemed to help.  I say seemed to, because I'm not sure if it was that or if the swelling just stopped happening because of time.    I am 6 months post op now, and I do still have to watch my sleeping position, if my neck isn't supported right I will have a headache on the AN side.