Did you know there are over 600,000 people in the U.S. living with a primary brain tumor?

Per John Hopkins Medicine’s neurology website, about 5% of primary brain tumors are acoustic neuromas (sometimes called a vestibular schwannoma). This is what I have. An acoustic neuroma is a benign, slow-growing tumor on the nerve that connects the ear to the brain. Even though these type of tumors are usually benign, their growth can affect neurological function and eventually become life-threatening.

Acoustic neuroma symptoms vary depending on size of the tumor; but can include hearing loss, ringing in the ears, dizziness, or facial paralysis. Other symptoms may seem like you have other medical conditions because of pressure on the brain stem and cerebellum.

My tumor was found by accident because of ‘other’ medical conditions the doctors were trying to treat and determine the cause. I didn’t have the classic symptoms and glad that I pushed the issue because ‘something wasn’t right.’ My breast cancer doctor was the one who listened and suggested an MRI. Bingo! A tumor was found to be pushing on my brain stem and cerebellum, not the ear canal.

(picture courtesy of the Acoustic Neuroma Association)

There are three options to treat an acoustic neuroma:

(1) Watch and Wait approach. This route is used when the tumor is very small and there are no symptoms. Or the patient is elderly and life expectancy is not very long.

(2) Surgery – partial removal or total removal. This is the option used when the tumor is 3cm or larger. Partial surgical removal is relatively new and is used when trying to save your facial nerve for example. You’ll most likely lose 100% of your hearing with the affected ear nerve with either type of surgery.

(3) Stereotactic Radiosurgery (SRS). The radiation option is ‘tumor control’ and most effective when the tumor is less than 3cm in diameter, and/or the patient is young and you want to preserve quality of life. The tumor isn’t removed but the growth will be stopped and in most cases, the tumor will shrink. The downside is that you will need to be monitored for the remainder of your life. Specific technology available is either the GammeKnife or Cyberknife. I chose the Cyberknife after consultations with several neurosurgeons. This technology wasn’t even readily available a decade ago by the way.

Per the Acoustic Neuroma Association, “typical published results following SRS for acoustic neuromas report 93% long-term tumor control, 50-70% chance of perserving useful hearing and <1% risk of any permanent facial weakness based on average 3 year follow-up."

I could be a poster child of what went right. My tumor shrunk 25% (from 2.2cm to 1.7cm). I have no additional hearing loss. There is no facial paralysis. And despite how scary this may all sound, I feel fantastic three years later and live quite an active life. That’s my story…I would love to hear about others to share.