Meeting the Intruder

Today, for the first time since finding out I had a pineal gland cyst about a month ago, I got to see the MRI pictures of the cyst. It shocks me to know that this exists in the middle of my brain. I am being told it is a benign cyst, which is comforting, but how can something so large not cause symptoms? This is the medical myth. Please allow me to introduce you to my brain intruder:

Side view of brain with pineal cyst, round and lobulated downward, sitting above the brain stem and cerebellum.

Another view showing cyst in the center of the brain.

Apparently, pineal gland cysts are common. You could have one and not know it. MRI's completed for other reasons (concussion or other brain trauma) reveal pineal cysts in 1-4% of the population. In autopsies, it is said that up to 23% of dead bodies are found to have pineal gland cysts. For the reason that they are often found incidentally, the belief exists that they are ALWAYS incidental findings and ALWAYS asymptomatic. Admittedly, you can't ask a dead person if they had symptoms. But, for those with symptomatic pineal gland cysts, the classic symptoms are pressure headaches, nausea and vomiting, blurry and double vision, memory and cognitive complaints, fasiculations (or twitching), and gait disturbances. How the cyst causes these symptoms is because it can put pressure on the areas where cerebrospinal fluid drains in and out of the brain. Once the fluid cannot drain out, hydrocephalus occurs. This is the pressure headache. I have the classic symptoms of hydrocephalus, but my MRI images do not show excess fluid in the brain. Therefore, the surgeon I saw today cannot corroborate my symptoms with the MRI images. He will not consider removing the cyst until he has documented evidence that I have fluid buildup occurring in the brain. Keeping in mind that he has absolutely no explanation for my symptoms. He did tell me that the next time I have a crushing headache like I had on Wednesday, to go to the ER at St. Anthony's, tell them I am his patient and need a CT scan during the crushing headache to see if I am getting a fluid buildup at that time. If the CT scan shows hydrocephalus, then he has something to prove the cyst is symptomatic. This is a very frustrating place to be...not believed. But I'm determined to get answers and I will keep searching until I do. This intruder has to go because I want my brain (and quality of life) back!