1 Year Post Gamma Knife
I hope everyone’s having a wonderful summer! It’s been some time since I’ve posted in this group but it’s been a year since my Gamma Knife treatment so sharing in hopes this can help someone!
For background I was diagnosed in 2023, at 23 with a 5mm AN contained to my right IAC. My symptoms were sudden hearing loss, constant loud tinnitus and slight balance issues. I decided on W&W since my AN was small but every 3-6 months I would lose more hearing with worsening tinnitus without any growth. I saw doctors at Jefferson, NYU, UCSD, etc. & they all had varying opinions on treatment. Initially I wanted to get middle fossa surgery, even scheduled it at UCSD but cancelled due to chronic health issues flaring up. As time went on, being on W&W started to weigh on me since it felt like I was just waiting for my hearing to go. My apartment lease was ending early 2025 and I was moving back home so I felt like it was time to re-asses treatment; another pressing factor was that I still had a PPO plan under my Dad making it easier financially. It still took me almost 2 years to get to a point where I could make a decision on moving forward on treatment.
I went to NYU again, to talk to Roland about middle fossa and Kondziolka about Gamma Knife. I liked the idea of surgery but with my pre-existing condition (Ehlers Danlos syndrome) and only a 50% chance of saving any hearing, I felt like my quality of life would not improve much after surgery. It also wasn’t encouraging that I was declining in hearing without any growth. I really loved Roland as a provider though, will definitely go to him for a cochlear implant if I’m in need so I recommend him! After talking with Kondziolka, I decided to move forward with Gamma Knife and had it July 2025. I will say I’ve had a lot of procedures so getting the head frame was very easy for me! I actually felt relief because I suffer from tmj/headaches/migraines so the numbing was glorious. I took 3 days off work but was totally fine to drive the day after, really only had tension headaches but I suffer from those daily.
Whenever I noticed hearing loss/change in tinnitus, they would give me a dose of steroids - I’ve only had to twice in the past year. I had my 6 month appointment in January and everything is stable, including my hearing which is super encouraging! My hearing test looked the same as it did pre-treatment. I probably have about 60% of serviceable hearing left, I feel like the tinnitus makes it harder for me to hear than anything. I did notice that my tinnitus isn’t as loud as it was prior to GK but that could be stress related too, who knows.
This past year has been the most normal I’ve felt since the diagnosis. I’m sure a lot of it had to do with relieving the mental load but nonetheless I am very grateful for the care I received and my current health. I do worry about the symptoms that could appear as time goes on but it seems to sit easier with me now that I went through with Gamma Knife. I will say, life is a little different now; I have a shorter temper & social battery, I’m always the driver so long drives with a friend are now filled with music instead of conversations, when I go to dinner in a loud restaurant it’s going to be a lot of nodding. Don’t get me wrong, I get frustrated but as more time goes on there is less emotion tied to it. Really taking it day by day as they say! And shoutout medical marijuana - it helps me tolerate being in social settings or on days my tinnitus is unbearable