When I was 27 years old I saw an ENT doctor because I had realized I could not hear on the phone with my left ear. The doctor told me that I had probably lost hearing on one side from a loud traumatic event, or a virus. But since he couldn’t rule it out, he would do an MRI to check for a rare brain tumor called an Acoustic Neuroma (AN) or Vestibular Schwannoma. He told me, “You probably don’t have it. It is super rare. In my entire long career I have only seen 6 of these tumors.”
I was lucky #7.
In the course of seeing doctors and seeking treatment, I would often have medical professionals, friends, and family make statements like, “If you’re going to have a brain tumor, you’re lucky it’s this kind, this is the best brain tumor to have. You’re so lucky it isn’t cancer.” But finding out you have a rare brain tumor definitely doesn’t feel like good luck – more like losing at long odds.
I was fortunate to have my mom as I underwent my brain tumor journey; she was also a survivor of a different kind of benign brain tumor. My mom gave great support and advice, and having someone in my corner who understood meant a lot to me. I decided that I wanted to pay it forward, and support other brain tumor warriors on their journeys. It has been my way of taking something horrible that happened to me and turning it into something positive and good. I began volunteering with the Acoustic Neuroma Association in a variety of capacities. Helping other AN warriors has been a great joy in my life.
I am singled sided deaf as a result of my AN and treatment; and it’s been a steep learning curve finding my way though motherhood and my career with hearing loss. I have become very passionate about the topic of hearing loss, as well as hearing devices. So often access to assistance is just not there. I also feel strongly that cultural stigma around hearing loss and devices is creating huge, unnecessary barriers for folks with hearing loss. Insurance companies should not be treating hearing aids as cosmetic (many don’t cover them at all). Young people should be able to feel comfortable in their own skin while using hearing assistance devices.
So I started this blog as a place to support, encourage, and share resources for brain tumor warriors on their journey. I also want to use it as a platform for advocacy for those with hearing loss. I hope this is a place to feel seen, empowered, and more hopeful.
The "Lucky" Brain Tumor 