The Brain Surgery Experience
Just a Headache
In the summer of 2003 I went to the doctor to get a referral. I needed the referral for a reason unrelated to my eventual brain surgery, but while I was there I thought I should mention that I was having headaches. I explained that I had been getting these headaches for the last six or seven years, that I went months between bouts, but that when I got them they could last weeks, sometimes almost two months. My doctor didn’t hesitate; she sent me to have a CT scan.
I had done a fair amount of research trying to understand why I was having these headaches and what I could do to manage them, or even get rid of them altogether. At first I thought they were sinus headaches. I eliminated dairy from my diet and made some other changes, but the headaches kept coming. Then, someone mentioned they sounded like “cluster” headaches. Migraines are common in my family so I thought it reasonable that if lifestyle changes weren’t helping that they must be something I inherited. So, I looked into cluster headaches. The description sounded very similar to my symptoms. The only difference was that my headaches never seemed to get quite as severe as those of the people posting on various message boards.
The pain was always on the same side of my head, and only there. The frequency and amplitude of the headaches would ramp up over a few weeks and then they would disappear as gradually as they came. Then I came across some more information about cluster headaches and Chronic Paroxysmal Hemicrania. Apparently these two different conditions are easily confused, but in short CPH symptoms sounded even more similar to my experience. While reading about these on the internet I came across a page where a doctor was recommending that all patients thought to have cluster headaches be sent for an MRI to rule out the presence of a benign tumor that could cause similar symptoms. A CT scan apparently is not as good for diagnosing this type of tumor.
Thanks to my insurance my doctor had to send me for a less expensive CT scan first. If that turned out positive then she would be able to get insurance approval for an MRI.
Not long after the CT scan I got a disturbing call from my doctor. There was something in my head that shouldn’t be there. I think the reason the call was so upsetting was that I wasn’t able to get much information beyond “Xmm in diameter… well-defined… probably not cancer… in the third ventricle.” I was probably told this on the original call, but there was another object in my head that needed to be addressed. Somehow this one didn’t register until after I called my doctor back, later that same day I believe. From the two or three calls all I took away was that there were two things in my head. One that measured less than a centimeter in my third ventricle and a much larger one, maybe as large as an egg near the front of my head.
And this is when the freak-out began. I didn’t know what I had, if it would kill me, or what I was supposed to do about it. I was reading everything I could find on the internet, but without a specific diagnosis I was going down a lot of irrelevant paths. I came across many conditions and stories much worse than mine would turn out to be, and at the time this research was actually making me feel worse.