Edgedancer,

Sorry to welcome you to the club. Let me first say you are in the toughest part of the process, the unknown. As ESH said, first we are not doctors and here second there are no guarantee outcomes regardless of what you decide. I see you reached out to many great places.  I also did that and had reasonable response times, give them a chance. We are more impatient then the system. I learned this when my young son was diagnosed with cancer.  I wanted to do something the next minute, it took a little time.  I had to remind me of this event as I went through my decision journey.  This time is stressful but the tumor is slow growing so we have time on our side.

This is the medical condition where the patient has the say on what to do. I stayed in watch and ignore (wait) for two years.  I then quit (retired) from my job and focused on this issue.  I found this site and met someone in person that help greatly, I discovered I was not alone. That gave me the courage to move forward. I reached out to many across the country and received returned calls and meetings. They will get back to you soon.

I put together my information in what I call a decision matrix. I worked full time on this several years ago.  If you would like to see this let me know and email me at Dan4att@gmail.com. Keep on moving forward.

Good Luck on your decision journey,

Dan

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 was diagnosed with a small AN (6x8x5)mm in March 2024, and I am still on "wait-and-watch". However, I found out on my last MRI on 10/25 that it is growing (7 x 12 x 5)mm. I am looking for care in the Baltimore area for treatment in case I decide. I am leaning toward radiation. Please let me know if anyone has used the service at Johns Hopkins or any other center in the Baltimore area. I would appreciate if you could share your experience and the physician's name too.

Thanks

The most important step is talking to your doctor about medication timing, walking limits, and any emergency contacts you might need. I always keep a small folder with prescriptions and medical notes just in case. In the middle of prepping I skim travmodo.com because it helps me look at general travel logistics, like airport tips or quieter destinations. Bringing noise-canceling headphones or comfort items can make long days much easier. Don’t hesitate to rest when your body tells you to. With the right planning, you can still have a great travel experience without feeling overwhelmed.

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!