Join content creator and pediatric brain tumor survivor @Gryphi on April 7 at 12 p.m. ET as they commemorate the 7th anniversary of their craniotomy with a fundraising livestream for the Pediatric Brain Tumor Foundation on YouTube and Twitch. Read their story, which they’ve shared below, and help them mark this milestone by donating towards their fundraising goal here.
I was born with a colloid cyst of the third ventricle, but I didn’t find that out until I was 23 years old. I was driving to work one day, when I suddenly felt intense pain and cramping in my entire face, followed by numbness.
I ended up in the emergency room where they ran a bunch of tests and found the tumor. It was blocking cerebral spinal fluid from leaving my brain, causing hydrocephalus. Due to its size, the surgeon wasn’t sure if I was dealing with a colloid cyst or a central neurocytoma and ended up bringing it to a board of neurosurgeons in the state for further examination.
I dealt with excessive pressure and head pain for a few weeks before going in for a craniotomy. The surgery went as planned, and they removed a “grape-sized” colloid cyst from the center of my brain. My surgeon said it was the largest he’d seen, which was why he was uncertain about my diagnosis before surgery.
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn't happen. It's too 'taboo' or 'uncomfortable.' So, this year, on the 7th anniversary of my surgery, I want to talk about it.@Gryphi
This time period was really scary for me. I had never had surgery before, and colloid cysts can be associated with sudden death. I was nervous about my brain surgery, I was nervous about suddenly dying, and I was in a lot of pain. Over time, things got better, but I still have lingering head pressure and a massive scar.
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
I’m hosting a dual stream on YouTube and Twitch on April 7th at 12 p.m. ET to raise money for the Pediatric Brain Tumor Foundation and educate others on this scary topic. Even if you don’t have time to drop by during the stream, you can still help me hit my fundraising goal by donating at tiltify.com/@msgryphi/gryphi-x-pbtf.
It might be uncomfortable, but conversations about pediatric brain tumors are important. Let’s not erase the pain and fear that comes with this diagnosis.
When children and teens finish treatment for a brain tumor, the journey has only begun. The Pediatric Brain Tumor Foundation helps survivors and their families navigate the months and years ahead. Connect with our team today for resources, community support, and information about life after treatment.
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“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
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