May is Brain Tumor Awareness Month. The week of May 8 – May 14, 2016 is Acoustic Neuroma Awareness week.
Mark Ruffalo and I have something in common. We both were diagnosed with a primary brain tumor, specifically an acoustic neuroma. His was discovered in 2002 and mine in 2009. Even though this type of tumor is benign – not considered a cancerous growth – it can still be life threatening.
The National Brain Tumor Society estimates 78,000 people will be diagnosed with a brain tumor for the first time this year alone (80% considered benign). There are over 688,000 people in the United States who are currently managing life with a brain or central nervous system tumor. I am part of that data.
No one is ever ready to receive a brain tumor diagnosis. A brain tumor diagnosis is life changing. Each person’s experience will be different, but there is a similar sense of fear. I learned to manage that fear by taking an empowerment approach.
I had no obvious symptoms other than occasional headaches. But I instinctively knew something was not right. An MRI was ordered after experiencing high prolactin levels (a hormone produced by the pituitary gland). A very tiny tumor on my pituitary was discovered and – surprise – an acoustic neuroma was found (approximately 2.25cm). Two brain tumors!?
An acoustic neuroma grows slow, can cause balance issues on one side, hearing loss and weakness to your face. My tumor is also pushing on my brain stem.
This re-prioritized my goals. What helped me the most was expressing my thoughts and feelings through my blog that led to a new perspective on life. The first blog post was Living With a Brain Tumor. This experience is the main reason I was attracted to being a health advocate. My children were 11 and 14 years old at the time of the diagnosis. I had to be there for them and wanted to watch them grow up.
There are basically only 3 options when dealing with an acoustic neuroma: (1) wait and see approach/monitor; (2) surgery; and (3) radiation. Mine was too large to just monitor it. Surgery would be difficult because of the location. I met with five different specialists and ended up choosing stereotactic radiosurgery (Cyberknife) to treat mine. The side effects were a blast and lasted almost a year. Couldn’t walk a straight line, had some facial numbness, and got dizzy if I turned my head too fast.
The tumor shrunk – went from 2.22cm to 1.7cm within a year (basically 25% smaller). It has increased slightly but has been stable since 2014. My MRI is scheduled every two years now since I don’t really have any “symptoms.”
The doctors are impressed with my overall balance considering the size. I do have balance issues if walking outside in the dark. It can be hard for me to be out on our boat if the water is choppy. So I avoid those situations.
There is hearing loss in my left ear. I need to remember to politely ask “Can you repeat that?” rather than “What?!” And I can converse best when you are seated on my right.
Rather than just raise awareness, I want to take action. I recently signed up to participate in a causation study by Yale University. What causes an acoustic neuroma? Are there genetic risk factors?