Thank you-
That does makes sense to have more than one surgeon. Its slowly all coming together for me. So Katie, you had the trans lab. What were some of the deciding factors for you? Thanks for clearly up the surgeon thing.
When I first diagnosed, I was actually a watch-and-wait which I was thrilled by. My hearing was already gone (that was my only presenting symptom), so we weren't worried about stopping growth for hearing preservation. My facial nerve function was still 100%, and treatment puts that at risk. So, I did MRIs every 6 months. After my third MRI, we found that my AN was growing at a much faster rate than average (7mm over a year) and was starting to press on my brainstem. So, time to do something about it before it got even more complicated.
As for deciding between surgery and radiation, that was tough. I talked to lots of AN patients, neurosurgeons, and radiation oncologists. All the docs had experience with hundreds and hundreds of AN patients so I trusted what they said. It came down to a few deciding factors:
1. The rapid growth scared me and a big part of me wanted it out for my own peace of mind.
2. With the AN already pushing on my brainstem, there was no room for swelling or other changes brought on by radiation. And if it ever did start growing again years down the road, I'd probably quickly run into problems.
3. If I had to do surgery, I'd rather do it while I'm young (I'm 35) and healthy than risk having a radiated tumor regrow and then face surgery when I'm 20 years older.
For me, deciding which surgical approach to use was pretty easy. I had already lost all hearing, so hearing preservation was not a concern. Given that, everything I read and everyone I talked to said translab would be best b/c it givens the best exposure to the tumor and nerves once you're opened up.
In the end, I'm very happy with the choices I made about my treatment. Surgery has been relatively easy for me to recover from (though I'm only 3 weeks out and obviously not back to full form yet), and I have had no damage to my facial nerve (the biggest risk of surgery). But I believe that's because I found a team that had so much experience in treating ANs. Even the anesthesiolgist at my surgery had done hundreds of AN surgeries and had special protocols developed just for them.
Hope that helps!
Katie