On July 18, 2011, one of my doctors told me I had a 5 centimeter tumor in my cerebellum (and hydrocephalus) and I began this blog the next day. I was then 39 years old and this blog chronicles my experiences on a road NEVER imagined.
- July 18, 2011 – diagnosis of tumor
- July 27, 2011 – craniotomy of resection of tumor
- August 4, 2011 – 2nd craniotomy (CSF leak)
- October 2011 – diagnosis of Cowden’s Syndrome
Backstory: Around Spring of 2011 I began to get headaches that I hadn’t ever experienced before. They were very hard to describe to my doctors and family, but the best I could do was term them, “Pressure headaches”. I would get this pain/flushing sensation at my neck/base of my skull. My vision would get shaded (kind of like the lights being turned down) and this whooshing/thumping sensation would slowly creep up the base of my skull and envelop my entire head. Over all I think each episode lasted anywhere from 60-90 seconds, maybe longer. On 2 occasions, during an episode, I lost muscle strength in my left leg and almost collapsed. (In hindsight, I think they may have been mini-seizures.) I had to balance myself on something sturdy until the episode ended. Looking back at that time – it never crossed my mind brain tumor.
I talked to a few doctors during these months and although one wanted to write me off as having migraines, I knew to push further and get with a different doctor. I told first doctor, “I get migraines. I’d pay money to have a migraine over this.” Thankfully, one of my doctors HEARD ME and sent me to have 3 diagnostic tests. I don’t remember exactly what they were but one checked my heart and one checked the arteries in my neck. The 3rd test was the CT scan….I recall vividly the conversation between the technician and I after the scan was over. “OK, we’re all done. Your doctor waiting for you so you can go to see him.” he told me.
My heart sank. I knew this wasn’t good. 😦
I remember walking up the flight of stairs, in a daze. I remember getting to the exam room. I remember my doctor walking in, shaking my hand, and saying, “There’s something there.”