Part IV — What’s wrong with me?

My seemingly endless parade of referrals and doctors and tests started in January with my first visit to Dr. Lander. In the same easy manner he uses to brush off Mr. Apron when he insists he has oral cancer for the 3rd time in a year, he listened to my symptoms, and said, simply, “This sounds serious. I’m sending you to a neurologist.” He gave me the name of a practice down the street, which is how I began learning all about the fabulous private-payer health care system our country is putting up with. At the first visit, I was informed that the script with the doc’s name on it was not actually a real “referral”, even though I had truthfully been referred. Thankfully Dr. Lander’s office was open and they faxed an HMO referral right over. I then met Dr. Hart.

My feelings towards Dr. Hart are mixed. My feelings about neurologists in general are mixed. They seem to me to be neurosurgeons without the cutting, who compensate by performing a careful dance with drug levels, trying and tweaking different dosages of meds to balance side effects with symptom relief. My discomfort with Dr. Hart stemmed from his oversized ostentatious office furniture – huge mahogany-looking bookshelves and a desk, with two cramped consultation chairs for anxious patients to shove themselves into. He then relentlessly insisted I not only describe my tongue spasm, but requested that I demonstrate with my hand what my tongue looks like during an episode. For all my running to various bathrooms when I would feel a spasm coming on, I can’t say definitively I ever looked in the mirror. From my friends’ initial reactions when I showed them my tongue back in 9th grade, I knew that was nothing I cared to see. I used a mirror only when my tongue was done writhing to confirm that I had regained control of all my muscles. Maybe to a neurologist, being able to see or experience the seizure in some way enhances his understanding of the specific type of seizure. He could deduce from my description that it was no grand mal or absence seizure. For one thing, I never lost consciousness. For another, it was concentrated to a loss of muscle control in one part of my body – my tongue, and recently, the left side of my face. I still don’t know how pressing me to show him my best impression of my seizure helped him diagnose it at all. Especially seeing as he just packed me off for an MRI anyway, leaving the diagnostics to the radiologists.

MRIs are fun little tests. For those of you who have never had the pleasure, I am happy to recreate my experiences with the MRI tube. From what I understand, there’s a huge electromagnet which revolves around the human. Much like the motors we made in 11th grade physics class by wrapping 2 L-brackets in copper wire and sticking a axle in the center that rotated with the magic of alternating current introduced via a battery, this huge electromagnet causes all the hydrogen atoms in the water in one’s body to line up their negative and positive poles (they act like little magnets). The charge they give off is picked up in a radio frequency by the scanner. The resulting scan looks like thin slices of brain (or whatever body part you stick in there). The patient’s experience is interesting as well. First I had to take off all metal I was wearing, in order to keep on my civilian clothing. This required careful planning as I dressed that morning. I found an elastic waist skirt, so I was zipper-free, and a non-underwire bra. I took out all hair clips, and gave my watch to Mr. Apron, and I was set to go. Then I lay down on a cold skinny table (no wonder heavier people have anxiety about MRIs). They handed me the “emergency signal”, a squeezy bulb I could squeeze in case of panic attack, pulled down a white cage over my head with an angled periscope mirror so I could stare down towards my feet, and told me to be still. They’re not kidding. They don’t even want eye movement or heavy breathing.

It’s actually very similar to the corpse pose in yoga, which always makes me fall asleep. It would be no surprise then, that I fell asleep in every single MRI tube I entered, if it weren’t for the fact that the sounds emanating from the machinery are like having six angsty teenage boys beat on trash cans using golf clubs. Oh, and the trash can? It’s surrounding your head. Yet I fell asleep, each and every time. I can fall asleep anywhere, on almost any surface – floors, couches, footstools, cars, buses, auditorium seats, etc. As long as I can rest my head, I’ll be fine. In addition, I usually took the 7:30am appointment so I’d miss the least amount of work, and I was half-asleep to begin with.

Another test I slept through was the aptly named sleep-deprived EEG. This was scheduled for 7:30am as well, and we had arrived around 7:00am, due to Mr. Apron’s chronic earliness. They insisted the lab didn’t open till 9am, but I somehow had proof of my appointment, so we were let through. My tech’s name was Maria Lusi, as I read from her name badge. She explained an EEG in the following way: “It’s like an EKG, but of your head.” This would have been fine, had she stopped at that. She felt it necessary to repeat this tidbit of information several more times till she was sure we had as much understanding as her instructors had imparted to her in EEG school. In truth, an EEG, an electroencephalogram, is an EKG of the brain. It measures electrical activity via carefully placed electrodes on the scalp. For seizure disorders they love to let you sleep through the test. Even if you don’t have a seizure during the test (they’d just die of excitement), they can sometimes see atypical “sleep spindles” or other brain waves which indicate and can help to diagnose different types of seizure disorders. I had a lovely nap with my head covered in electrodes that smelled like grapefruit.

I also had an MRA, a magnetic resonance angiogram. This differs from an MRI because it measures blood vessel activity instead of soft tissue (brain matter, internal organs and such). Looking at the scans, the MRA is most telling with regard to my AVM. My EEG came back completely normal. Looking at the MRI as a lay person, I could tell that the left and right sides were mostly symmetrical, except in one small area. However, I couldn’t tell what was going on exactly. I’m not sure Dr. Hart could, either, which is why he sent me back into the tube for the MRA. As we met in February in an exam room so he could show me my scans on a light table, he pointed out that shady area on the MRI, and told me about this thing called an AVM: arteriovenous malformation. (NB: if I didn’t describe the testing clearly enough, hang on for the AVM description – this time I know my shit.) He explained that I had a jumbled bird’s nest (2x3cm) of blood vessels that did not form correctly, probably during fetal development. What usually happens is that blood leaves the heart freshly oxygenated through huge arteries. It’s been propelled at high pressure so it can reach the far corners of the body and deliver oxygen to the tissues and organs. As it reaches various parts of the body, it splits off into smaller arterioles, then to capillaries, where the oxygen exchange actually occurs through the thin walls of those blood vessels. Then, the blood has to get back to the heart to be reoxygenated, so it begins this journey by passing from the capillaries into venules, and finally veins. It reenters the heart through the vena cava and begins the journey all over again. Arteries and veins are very different structures. Arteries have thick walls to withstand the high-pressure of the blood gushing from the heart. Veins have thin walls because they’re transporting lower pressure blood. The series of connections between them is essential to proper oxygenation and blood flow. Now, back to my AVM. That mass of spaghetti I saw on my MRA – called a nidus – is the result of an artery connecting directly to a vein without all the subordinate blood vessels to mediate pressure. The seizures were occurring because the brain was frankly pissed off at the AVM, which caused an “electrical disturbance”, resulting in a seizure. The reason they stayed localized to my tongue and, later, my face, is due to the exact location of the AVM. It rested at the back of my frontal lobe, almost exactly on the motor cortex in my right hemisphere. This motor cortex contains a representation known as the homunculus, which shows a disproportionately figured human body. The areas which are larger represent the fact that more of the cortex (more “brainpower”) is devoted to controlling them. In the left hemisphere there’s a corresponding sensory cortex to represent how much cortex is dedicated to sensing different body parts. In my case, the AVM sat right near the part of the motor cortex dedicated to tongue movement. As best we can guess, it had grown some during my lifetime and had started to involve the left side of my face.

The symptom in and of itself was not dangerous, not warranting more than pharmocological intervention, but it was the dangerous potential of the AVM that had me sprinting to yet more doctors. The AVM was a time-bomb. Though we wouldn’t know for sure that it would ever happen, that high-pressure blood coursing through the vein had the potential to burst, hemorrhaging blood all over my brain, leaving me dead or severely impaired.

Many people who embark on a journey towards finding the answer to “What is wrong with me?” find a sense of closure when they have a diagnosis in hand. It helps them make sense of their symptoms and begin to work towards treatment, if there are treatments to pursue. As I listened to Dr. Hart explain all this, it all made sense. I understood about the blood vessels and the motor cortex from my biology and psycholinguistics classes in college. I felt huge relief at having a name for my problem, having something I could Google, being able to seek out a support community, and being able to start towards treatment. I had an aha! Moment in that office, staring at the light box and the slices of my brain. Medical “professionals” such as Maria Lusi like to have their patients verbalize understanding of a procedure of a test they’re about to perform. Likewise, real doctors like Dr. Hart like to see that patients understand the frightening diagnosis they’ve just been handed. That appointment is the first chance to ask questions, the best opportunity to make sure you really understand what is wrong with your body before you go home to and scare yourself. I showed Dr. Hart I understood what was going on. I still don’t have a firm grasp on what a seizure is, other than the neurons getting pissed off at some disturbance in the body/brain, but I was so enthusiastic about examining my scans and understanding the AVM that I surprised him a bit. “Tell me again what it is you do?” he asked. “Oh,” I replied, “I’m a preschool teacher.” Don’t judge me by my day job, dude.

Diagnosis on hand, I started down the journey towards surgery, one day at a time.