Vestibular Schwannoma: One year later
Back in July 2015, I was diagnosed with a Vestibular Schwannoma (aka acoustic neuroma), which is a rare type of tumor spitting off cranial nerve cells and and often pushes on the brain. Google says there’s fewer than 20,000 cases per year which makes it ‘very rare’. The chance of getting this tumor is about .006% per year.
One of the frustrating things for me was I couldn’t find any documentation about my surgery, or what it was like to recover, so I’m publishing this primarily for people who have been diagnosed but aren’t sure what surgery / recovery is like.
My tumor was removed by Clough Shelton at the University of Utah. Although the tumor is rare, Clough sees a lot of these surgeries because he’s a “magnet” doctor for them… a lot of the surgeries in the intermountain west (I’m from Utah) go through him, so he has a lot of experience with them.
The upside? He knows what he’s doing. The downside? He knows so much about what he’s doing that it felt a little impersonal… it felt like he was treating the disease instead of the person. I think this is ok though. As the guy opening up my skull, I wanted someone with a ton of experience, and didn’t mind so much if he wasn’t the most personable or comforting doctor.
As surgery approached, my symptoms didn’t really worsen, they had stayed the same since about April of that year: I couldn’t hear out of my left ear very well, my balance was really bad, and parts of my face were completely numb. It took till November to have surgery. I was diagnosed in July. It felt like forever.
After surgery, I woke up and had a big huge bandage around my head. The surgery removed my left hearing and balance organs, so I felt extremely disoriented. I was in the ICU for the first 3 days I believe.
The thing I never read about and nobody ever said a word about: I couldn’t see straight. Your eyes rely on your sense of balance to align them together. Without the left balance organ, my eyes were pointing in different directions. This, combined with a complete lack of balance, at first caused me to vomit a lot. The vomiting got better quickly, but my eyes stayed incorrectly positioned for maybe a month? I’m not certain but I know it was like that for weeks. (I watched Star Wars 7 with my head tilted backward because it was the only way I could get my eyes to align.) Don’t worry: This went away. I remember being frightened that it wouldn’t get better.
After the ICU, I was transferred to the floor. I started getting up and walking around for about 5 minutes every hour or 3. It was pretty rough, I was very glad my wife was there to help. (She’s a nurse, and holy cow it was amazing to have my own personal nurse at my side. Have someone there to support you if possible.) I didn’t sleep the first 48 hours due to physical discomfort.
My doctor did not want physical therapy for whatever reason, so my physical recovery was me doing laps around the nurses station. Trying to go for longer and longer each time.
After a few days (I forget how many, I think 5?) I was released from the hospital and went home. At home initially I started doing laps around the house… setting a timer on my phone and every hour I would walk around the house for 10 minutes or more. I continued to increase the pace and duration of my walking till I felt like I could attempt stairs.
After I think 6 weeks, I started working again. My surgery was roughly November 18th, I think. I went back to work on January 1. If I had to, I could have accelerated my back-to-work date, but that’s a benefit of owning your own company I guess.😀
My balance continued to improve for about a year. I noticed my balance plateauing, and I started trying to find a physical therapist who specialized in balance to help. Luckily there was one in my city, and they helped A LOT. They did basic exercises like burpees, and walking while shaking my head in different directions. I continue to go to them when I’m in town.
My balance is now returning to normal. I’d say I still favor my right side a lot, but it’s a lot better than it was even 4 months ago. I’ve been snowboarding about 10 times since surgery (4–8 times last year and twice this year) and it’s still not very fun yet because my balance is so bad. I’m planing to go once more this year and see how it goes now that my balance has improved.
Well that’s it. I’m happy to answer any other questions for anyone who has this type of tumor. The good news: It’s extremely unlikely you’ll die. The bad news: You might lose hearing / balance in one ear. However you’ll figure it out and get back to normal.
