Hi Newbie,
You asked how many people have AN's that aren't diagnosed, and I am willing to venture that it is quite a few. One lady in our AN support group was only diagnosed because she was in a severe auto accident and her fairly large AN was picked up on her MRI scan. She had no symptoms and no knowledge of what an AN was.
When I was diagnosed in October, 2013, my only symptoms were a loss of balance that I had been experiencing for several years. Finally went to see my family doctor and she sent me to a neurologist who ordered the MRI with contrast that discovered my AN.
I went through several decisions -first I wanted surgery to get that bugger out - then moved on to radiation and finally to W & W. What a roller coaster ride of emotions that was. I was very comfortable with the radiation therapy until I found out that I would become deaf in the treated ear after 2 - 3 months (due to radiation killing the cilia in my cochlea). Currently, I have some decreased hearing on the AN side, especially in the high ranges, but have about a 95% word recognition, so not too bad. So, I asked myself a question - why would I want to go through either surgery or radiation that would make me deaf in that ear, when I can wait and deal with the balance issues. If I start losing my hearing, then I can always choose one of the other two options.
That was in January, after an MRI that showed no growth in the AN for the last 4 months. Another in July, showed no growth as well. So far, my hearing has been retained and I am happy about that, because my wife and I are avid square dancers and I need to hear the music and the calls in order to function properly.
I think my experience also points out that the decision is always up to the individual involved and everyone is different, so the decision must be one you are comfortable with. (At first, my wife was decidedly not happy that I chose this route of W & W, but now she sees the value in it, so I am glad I went with my gut and not her concerns).
Much good luck on your journey, there are lots of wonderful people on this forum who will give you maximum support and information. There are also a few with their horror stories, but I always think positively, so if I did go for the radiation or surgery, I would expect a good outcome, regardless of what other's have experienced.
rodneyd