A "Positive" Test Result
One of the frustrations people with migraine disease often experience is the lack of physical indication of illness within the brain. There's no test that signals YES you do have migraine disease. Or yes, you are in unimaginable pain. We feel less respected, with implications that we just can't handle a little headache, or that it is “all in our heads.” In fact, migraine is usually diagnosed by process of elimination: lack of positive test results.
Results on an MRI scan
So when I finally had my MRI for the numbness and tingling I've been experiencing, I had decidedly mixed emotions about something actually showing up on the scan. This was amplified by the way I was informed of the result. The morning after the MRI, the hospital's radiology department called to schedule a follow-up test. That surprised me, and I scheduled it for the following week, googling to see what an “MRA” test would be ordered for. A more detailed look at veins and arteries, I learned. “Maybe he's just being... really thorough,” John said about my neurologist. But I knew that couldn't be because Dr. M is the most un-thorough doctor I've ever had.
That same day at 4:40 pm Dr. M's office called. The receptionist told me I needed to schedule a follow up test and I interjected, “I know. Radiology called me first thing this morning,” looking again at the clock and realizing my neurologist's office had sat on the information until the last possible second. “Oh. They did?” the receptionist said. When I asked why I needed a follow-up test, she hesitated. “I... shouldn't be the one to tell you,” she actually said. I asked her to just please tell me, after she hemmed and hawed and said I should hear it in person from the doctor, but offering no opportunity for that to occur. Finally she read the results to me and trailed off, unable to pronounce some of the words. “One of the arteries... seems to be enlarged. Possible aneurysm.”
Be careful what you wish for
So, there it was. The problem with wishing there would be something that would show up on a test is that with migraine, the only options are scary ones, tumor and aneurysm being at the top of that list. At a friend's suggestion, I went to the neurologist's office and had a copy of the MRI report printed out. “Tip of the basilar artery is somewhat bulbous,” it said. “Possible small aneurysm at tip of basilar artery.”
What followed was one of the strangest and most intense weeks of my life. Upon researching we discovered that aneurysms are very common, and often not fatal. They can be treated with medication or surgery. Sometimes they are even left alone. We struggled with whether to tell the girls, and if we did, what to tell them. My friend and clinical trial coordinator, H, gave me the name of a trusted brain surgeon at U of M. I railed against my neurologist, who apparently hadn't had the nerve to tell me the results himself, or just didn't deem it important to do so.
Basil artery aneurysms
I read up on basilar artery aneurysm and found that they are a complicated type, and nearly every symptom matched the things that had begun happening in July last year. There was no doubt in my mind that an aneurysm was there; everything fit perfectly. I even felt defensive if anyone, including John, suggested the result could have been in error. I felt that I had finally been given an answer, and while I didn't expect the migraine disease to go away or even diminish with treatment, I thought the irritating numbness, tingling, weakness and pain on the left side of my body would.
The morning of the MRA arrived, and my mom came with me. For some reason, even though no contrast was needed, I was very uncomfortable during the test itself. My autonomic migraine symptoms were activated, my eyes watering and my nose becoming red and swollen. I felt even more certain that an aneurysm would be found and thought maybe the magnetic imaging process was inflaming it somehow, causing the reaction I experienced.
MRA results showing nothing
John and I had arranged to pick up the results at the hospital records office rather than relying on my erstwhile neurologist to deliver them to me. At noon the next day, we drove to the hospital and I gave the receptionist my name and date of birth and filled out a records request with a shaking hand. One sheet of paper was printed out and passed to me through the window.
“MRA shows no aneurysm at the tip of the basilar artery. Therefore, findings on recent MRI brain are due to partial voluming artifact.”
I handed it to John. “It's nothing,” I said flatly. “Nothing is there.” My stomach had dropped and my body felt hot. I had never felt such a peculiar combination of relief, disappointment, and anger.
John read over the results. “What's this 'partial voluming artifact'?” He asked. “That sounds just as dangerous as an aneurysm.” I wasn't sure how I knew, but I told him it was just the type of mistake that was made in the MRI. It was difficult to find on the internet and what I did find on a scientific magnetic imaging information site said that they weren't going to give too much detail on voluming artifacts because most labs have developed to the point of not making that error anymore. The images had not been sliced thinly enough. The enlarged vein was actually just a blob of contrast.
Back to an invisible illness
We told the girls, my parents, and friends that it had all been a mistake and accepted people's congratulations. It was wonderful, for sure, to be able to tell my daughters my life had never been at risk, that I was perfectly safe; we had stretched the truth about aneurysms as much as we could but they still sensed it was very serious. I thought about the drugs I might have been forced to take that could have had horrible side effects; brain surgery, too, had been an exceedingly terrifying prospect. I hadn't really allowed myself to think about it, but John wondered if I would have had to stay awake during the procedure like some brain surgeries he'd watched videos of in terror over that past week.
And yet. Having a concrete reason for the odd new symptoms, a physical issue that could possibly be fixed, had been tantalizing. It was true that a big part of me had been glad for the positive result. And now... I'm back to the same old, same old of a truly invisible illness.
Have you taken our Migraine In America Survey yet?