On April 10, 2014, I had my first visit with the Complex Pain Clinic in Calgary. Within 10 minutes, I heard the words that would forever change my life: Trigeminal Neuralgia. I had never heard of this before and from what I was hearing, it was not very common for 16 year olds. But I had a diagnosis and that’s all I cared about.
I was weaned off my medications and put on Tegretol. After two days of being on Tegretol, my whole body was covered in an itchy rash. Antihistamines weren’t touching it. My local hospital sent me home saying it was nothing serious - that it would go away in a couple of days. Soon enough, my rash started connecting and boiling and burning. After a rather speedy trip to Calgary, I was diagnosed with the onset of Stevens-Johnsons. I had to stop the Tegretol right then and there. Soon after, I was introduced to Trileptal: the medication I am still on today.
After the Tegretol incident, I went back to Calgary to see the Complex Pain Team at Children’s. My anaesthesiologist suggested a lidocaine injection. After the injection, I had three hours of relief. I could touch my face. Shortly after getting home, the pain came back. But I can tell you, it was the happiest three hours of my life.
With little help from the Trileptal, I was referred to a neurosurgeon. She read the risks of surgery, but I had already done my research. I knew I wanted this. I knew I needed this. We signed the papers and were told 6-8 weeks. That was in October. The 6-8 weeks came and passed, but I was still hopeful. We saw an adult neurologist at foothills; she wanted to make sure I didn’t have a condition called SUNCT/SUNA. After two months of delay, she was confident in the Trigeminal Neuralgia diagnosis. I was cleared for surgery.
Four days ago, I received a call. We had a date for surgery: March 11, 2015. After a year and a half, I finally have the chance to be without pain. And just like that, the numbness ended. I started to cry and hyperventilate; I was so excited. I am still so excited. I’m trying so hard to be optimistic, but there is always that fear of it not working. For now, I’m trying to cherish all the good in my life and keep as much as I can in control. I am so thankful for all the wonderful people in my life that have helped me get to this point.
There is hope. I have it. And I wish everyone else gets the chance to experience it.