Misdiagnosed for 18 years
18 years ago, when I was 19, I was diagnosed with a rare inflammatory disease of the eye called Tolosa Hunt Syndrome.. which meant about every 3-5 years I had severe pain on the left side of my head, double vision and limited eye movement for about 1-2 months at a time... a diagnosis I became settled with and knew how to treat. In July of 2017 I had my first episode in 6 years. I was new to Chicago so hadn't established a doctor yet. When I finally did he suggested I get updated MRI scans because it had been nearly 9 years since the last ones, he insisted on high res scans with contrast, and it's a good thing too. Turns out I had two meningioma tumors on the left side of my head, one of which was pretty much strangling my left optic nerve. After an additional CT scan it showed that the primary tumor had completely filled my cavernous sinus, encasing my pituitary gland, them main arteries and nerves going to my brain, my left optic nerve and was making its way to the my right optic nerve. The doctors said radiation treatment was not an option for me and surgery was inevitable or I would go blind. I am scheduled to have a crainiotomy this upcoming Tuesday, October 31st... Halloween if you can believe it. I have handled the diagnosis fairly well considering, trying to stay strong for my loved ones. But its a scary thing... I'm only 37. Honestly my first reaction was less about the fact that I would be cut open and more about my vanity and possibly not be able to bare children due to the radiation I will have to undergo following the surgery to get what the surgeons can't. I've gotten past that now. The hardest part at this point is not knowing what the recovery will be like... they said it could be possibly a year before I'm fully recovered. I'm hoping because I am young and otherwise healthy I will recover more quickly. Despite it all, I feel mostly lucky... lucky that my doctor insisted on the high res MRI, that the tumor hadn't made it to my right optic nerve because they would not have been able to due surgery, lucky that I have a great medical team, and lucky that I have an amazing support system of people around me. 5 days and counting till surgery. Pray for me.