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!

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.

Hello,

I’m 11 days post middle fossa surgery.  They said to expect swelling but I’m noticing that every night I wake up with more swelling than when I went to sleep.  It feels like liquid between my skull and skin and can gently press certain areas and hear the fluid.

Is this actually normal?

Other side effects post surgery:

- 10/10 pain on glutes and bottom of leg to calf. I went in for a blood clot check and came back negative.  I can’t sleep no matter what medication I’m given as nothing fixes the pain.