04/25/2026
I have trigeminal neuralgia and 8 years ago today, I took a huge chance and had elective brain surgery in a hope that it might make some of the pain and symptoms I lived with every day less. It took nearly a decade of pleading with specialists who told me to “explore my emotional problems” or that I was “too young” before I was finally granted a surgical referral. I can remember getting the phone call back and the surgeon, having looked at my MRIs, said that it would be risky but he might be able to help me. Almost a year after my referral, the wait was over and I flew to Winnipeg for my surgery. I was told there was a 50% it would help and a 50% chance it could be made worse. I couldn’t imagine what worse would be but my surgeon, for the first time in my TN journey, gave me control over what was going to happen next. I took the chance, I had the surgery and while physically, it being one of the most intense experiences of my life, it was absolutely the best thing I have ever done. 8 years ago today if you asked me if I could imagine my life where I play music, where I could eat without fearing the electric jolts of nerve pain or even just being able to enjoy a kiss on the cheek, I would have said I had no idea what that would be like and I couldn’t remember what it was to exist without debilitating nerve pain ruling every decision I made.
Trigeminal neuralgia is known as the “suicide disease” as the rate of attempt is very high. TN is incurable, my surgery gave me my life back but it is only a bandaid that will likely one day fail. TN is a rare condition that is hard to diagnose.
Today, I am thankful for my little teflon sponge pillows that live in my skull. I am one of the lucky ones and I try my hardest to remember that on every good day that I have.
Happy 8th brainaversary to me!