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In March 2017, I woke up one morning and couldn't hear and had terrible tinnitus. After trying a few different things with my PCP and an ENT, they sent me for an MRI, just to rule out something I had a 1/1000 chance of having. Well, I am that one. An hour after the MRI, they called me to tell me I had an Acoustic Neuroma, a benign tumor sitting on my balance and hearing nerve near my brain stem.
Two weeks and lots of googling later, i had a one hour appt with an ENT at Hopkins to discuss my options. He explained that they grow slowly so I could take my time. Radiation was not a good option for me due to my young (ha!) age. So I could watch and wait with MRIs every six months or have surgery. He reminded me several times not to rush into a decision, seek out 2nd and 3rd opinions. But I knew, at some point, this guy-Fred- had to come out. Anytime there is something on your brain that doesn't belong there, I say get it out.
On June 19th 2017, I had a 10-11 hour surgery to evict Fred. I was not quite prepared for how rough I would feel, and how delicate the surgery is. Acoustic Neuromas are the best tumor to have because they are benign 99% of the time, but the surgery is quite complicated due to the location. I lost my vestibular funtion on the right side (hearing and balance) but Fred is gone, I'm alive and I only bump into things a few times a day :)
One thing I have noticed during this journey is that there is not a lot of research on Acoustic Neuromas and other brain tumors. The more funds we raise, the more awareness we raise, the more options other brain tumor patients will have. Brain Tumors don't discriminate. They effect the entire population, regardless of age, race, gender.
I am beyond thankful for my family and friends. But also my amazing team at Hopkins. There is no one standard of care for my tumor because it's rare. Which means we need research. And doing research means we need money. The more they know, the better informed we can be as patients. Help me get rid of Fred and all his cousins!
National Brain Tumor Society will not rest until a cure exists - but more needs to be done. Please join in my effort!
National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research and advocating for public policies that meet the critical needs of the brain tumor community. Your support ensures this important work will continue.
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