Sure, happy to share.
I was diagnosed in July 2014 with a 1.5cm AN. I didn't have any hearing loss, just some sound distortion on one side that had been misdiagnosed for years as allergies. After my diagnosis I sought consults from two doctors in Chicago, as well as at Johns Hopkins and 2 different doctors at Mayo (one neurosurgeon who just did surgery, and Dr Link who does both GammaKnife and surgery) Over the course of the year while I was researching, the tumor grew to 1.8 cm, so it was time to make a decision. I was told that due to the size of my AN (medium sized) and due to my age (54) I would be a candidate for either GammaKnife or surgery, it was my call. But Dr Link clarified it for me when I asked him for his opinion on which direction to go, he said "why would you cut your head open if you don't have to?"
The GK procedure itself was a breeze, and I had no side effects for about 3 months. After that I did experience moderate balance issues, especially when ascending stairs, and when walking in the dark, for about 9 months. I did have balance testing in 2018, determining I have 20% vestibular function on my AN side, it doesn't bother me too much, but I do fall more than I used to. I did not have any facial issues, other than my sense of taste is sometimes confused, (sometimes salty tastes sweet, spice is amplified, etc) which is a really weird concept. I do have moderate to severe constant tinnitus, worse when I'm tired, which is by far my most intolerable side effect. I have retained about 50% hearing on my AN side, but I believe that will likely continue to diminish. My tumor did show subtle growth at the 3 year mark, prompting my local neurosurgeon here in CT to recommend immediate surgery, but after a consult with Dr Link at Mayo I will schedule a follow up MRI in 12-18 months to assess the status. I am hopeful it has stabilized, but in any event, I have total confidence in the team at Mayo, and will definitely return there for any future procedures that may be necessary.
I know every situation is different, but hopefully this helps. I did a lot of research, met with 5 different doctors and finally came to a point where I was confident in my decision. For me finding a doctor who I had confidence in was the key to eliminating the stress. Hopefully the GK did the job and tinnitus, minor imbalance and moderate hearing loss are all I have to deal with on an ongoing basis. As previously mentioned, GK was the right procedure to me at the time, and I would make the same choice again. If I could give one piece of advice it would just be research and continue to seek consults with doctors until you are satisfied. Uncertainty is stressful for me. I wish you the very best of luck.
