My AN journey began in 2014. I had a busy two-year-old and a newborn who didn’t like to sleep. Life was hectic and I was frequently dizzy and I started having brief episodes of double vision. I initially chalked these things up to the utter exhaustion of motherhood but after several incidents, I made an appointment with my eye doctor. She ran some tests and I was relieved that everything looked perfect. Over time, the odd double vision incidents were happening more frequently (my vision would always return to normal after a few minutes) and I accumulated more odd symptoms like constantly hearing my heartbeat in my right ear (which also felt very clogged) and my right eye had become painfully dry all of the time. I could also see a correlation to weather and I wondered if this was ultimately a sinus/inner ear issue. Years prior, I had struggled with migraines and they seemed to be back with a vengeance as well. I frequently felt sick due to all of these things. My PCP was extremely dismissive and said that all of these things were normal, but my anxiety was growing as I knew that something was off. He agreed to refer me to a local neurologist for her opinion, though. That neurologist, Dr. Z, ran some tests that showed everything was normal and she was reassuring that it was probably just new migraine activity. She agreed to keep seeing me and encouraged me to try some prophylactic migraine meds, so we did that for several years. Sadly, none of them seemed to have any impact on my symptoms whatsoever. I wore a t-shirt on one of my last visits to her that was an impulse bargain buy that said “Make Lemonade”, along with a picture of a lemon. Dr. Z is originally from China and she quickly asked what the shirt meant, so I explained the idiom. Little did I know, that I would frequently think of that conversation over the next few months as I learned to “make lemonade” from my own lemons.
Since none of the meds seemed to help, Dr. Z agreed to order an MRI to rule out any other underlying causes of my issues. (I had been asking for an MRI for a couple of years but everyone kept saying that they really believed I was just having migraines.) I went in for the MRI in October of 2018, eager to check it off my list and gain reassurance that everything was perfect there too. I will never forget getting that personal call 5 hours later and her telling me that I actually had a brain tumor. She was excited as she explained how all of these odd symptoms made sense to her now. She believed it was a Vestibular Schwannoma (also known as an Acoustic Neuroma), was confident it was benign, and said it was a small to medium sized tumor. She explained that she couldn’t officially diagnose the tumor and that would be a job for the neurosurgeon. I was a mess of emotions through that process as I wouldn’t be officially diagnosed until nearly a month later.
From that point on, I set out to get as many expert opinions as possible. I quickly learned that if I opted for surgery, then I needed to choose my surgeons very, very carefully. These tumors are adjacent to (or sometimes embedded in) the facial nerve and working with it requires a lot of skill and knowledge as the nerve is so delicate. I ended up choosing surgeons at UCSD and traveling across the country for brain surgery. Talk about things I never thought I would do! Their team has treated thousands of these tumors and they study them as well. They work in a state-of-the-art medical facility and I felt that this team was going to give me my best chance at a successful outcome. On February 5, 2019, I had Retrosigmoid surgery to remove my tumor. This method was chosen in an attempt to salvage my hearing and relieve me of my symptoms. Surgery was roughly 6 hours long and they were able to remove all of the tumor. I also retained partial hearing on my right side. Recovery was rough but I want other AN patients to know that there IS life on the other side of treatment and it is good. There are continued challenges from the tumor and damage that it did but I feel extremely fortunate overall.