Part V — Meds and Doctors

Now it may have seemed as if I was a very strong person, a person capable of understanding her diagnosis in a calm and rational manner. A person capable of impressing her neurologist with her understanding of what an AVM was. On the surface, that was me exactly. But given the path that stretched out before me, I fell apart. It was one thing to sit in an office with a medical professional learning and rationalizing and getting answers to 8 years of questions. It was entirely a different matter altogether to be leaving the hospital’s campus alone with a ‘script in hand with the name of a neurosurgeon and instructions to go get a consultation from him.

I stopped at a pay phone just inside the hospital’s ambulance bay and called Mr. Apron at work. In those days he worked 8am-4pm at a non-profit an hour’s drive away. On that day, however, he was downtown at some conference, learning about new products and services he would soon care less about when his position was eliminated due to his narcissistic boss who was sore he didn’t make mindless small-talk at the office. Chances are that I had taken an afternoon appointment at Dr. Hart’s, and Mr. Apron was still downtown. As I reached him, he excused himself from the exhibit hall to take my call, and, upon hearing how upset I was, left immediately for home. I explained the whole anatomy of the AVM, the prognosis, the next step, having to call the neurosurgeon, and the weight of it all falling squarely on my lap. I somehow managed to drive the 2 miles home; Mr. Apron joined me shortly, and we fell to tears holding each other. He still tells me today how filled with regret he is he did not come to that appointment. He’d been to every other appointment, watching as I stalwartly refused to show Dr. Hart with my hand how my tongue looked during a spasm. And he vowed never to miss such an important appointment again. True to his word, he’s been there ever since, from the neurosurgeon’s consult to the waiting room to the recovery. Every step of the way.

Dr. Hart delivered another pronouncement that day. I would have to be on medication. Hated, dreaded medication that would keep my tongue from doing flip-flops in my mouth. It was never those actual events that scared me so much as what they meant in an underlying sense. This is true of seizures in a general sense, too.  It’s not usually the seizure itelf which causes harm, but the potential of what could happen during a seizure that has docs worried, such as hitting one’s head on a counter, slipping in the bathroom, or losing control of a car.   In that way, I was very lucky; Dr. Hart didn’t turn me into the DMV. Many people who have seizure disorders have their driver’s licenses stripped from them for a period of time until they’re seizure free, anywhere from 6 months to 2 years, depending on the state. Since my seizures were focal in nature, and I never lost control of my driving faculties (imagine arm spasms while driving, or leg seizures) or my consciousness, he let me keep on driving. But the drugs made me very unhappy. I was on Carbatrol, an extended-release version of Tegretol, a very old anti-convulsant medication, which I had to take twice a day. It’s been around in some form or another for over 30 years. The joy of seizure meds is that they’re supposed to be in the body at very consistent levels all the time, which meant I had to take them exactly every 12 hours and have monthly blood tests to check my levels.

Neurologists sometimes expend much effort trialing different meds, experimenting with different levels. I was fortunate to be on such a low-dose of the drug, but I still noticed side effects. For one, Carbatrol interacted with my birth control pills, which I had been on since junior year of college due to incapacitating cramps and other female troubles which would take me out of class each month and confine me to my bed, crying and writhing in pain and clutching a heating pad. So not only did I have to give up grapefruit (Yes, Carbatrol is one of those weird drugs), but I also had to forgo my precious, sanity-saving birth control pills. Not to mention the inconvenience of having to use condoms, but we don’t need to go there. You understand how much that sucks, not to be able to use a method of birth control that was a wonder drug in so many ways.

Mr. Apron felt that pain acutely, too, and not just each month as he heated up my heating pad. Seizure meds are evil things. They’re maintenance drugs for a chronic condition, and most people with seizure disorders have to take them indefinitely. That means even if they undergo surgery and have the underlying epilepsy-causing brain matter resected, they may still be on anti-convulsants forever. This is because, as Dr. Hart explained, once the brain has learned to seize, it can never go back to not knowing how to seize. In other words, the risk of having another seizure, no matter how long it’s been since the last, will always be there.

To decrease my risks, Dr. Hart told me to watch out for my triggers. I’m not sure if other people have seizure triggers like mine, but I had noticed trends in the past 8 years, circumstances under which I knew I was at higher risk for a tongue spasm. One of these was being thirsty or dehydrated. Even though I usually brought a juice box to school with my lunch, I was just never one of those juice-box-drinking kids, especially with the 23 minute lunch periods we had in high school! In college, I started trying to remember to carry a water bottle and drinking throughout the day. But as my mother used to say as she’d pack me onto an airplane, unaccompanied, “Remember, what goes in one end must come out another.” Thanks, mom. I know where the airplane toilet is, and I know when my bladder is full. So in addition to remembering to take my water bottle each day, I had to make sure I was near a bathroom, not only to hide the inevitable tongue spasms, but also to drain the copious amounts of liquid from my body I was drinking to stave off those same spasms.

Other triggers he said were common to most people who have seizures include skipping meals, being sleep-deprived, and using alcohol, caffeine, cigarettes and other such staples of college-age life. “You’ll have to live the goody-two-shoes life,” he said. And I have. I have turned down every single alcoholic drink offered to me since that moment, except for at my own wedding, when I had six sips of champagne. I have cut back my caffeine to the point where I only partake in Excedrin when I have a headache (roughly the equivalent of 8oz coffee’s worth of caffeine) and when there’s no caffeine-free soda to be had (which explains my current addiction to Caffeine-Free Diet Coke). On those wicked hot summer days, I miss nursing an ice cold Frappucino, even if they do cost nearly $4. I hated explaining my sobriety to people, but at least I never liked coffee in the first place. I was never a big drinker, but from time to time, I’d like to be able to have a drink when the situation feels right, rather than stick out like a social pariah with my Diet Coke (sans caffeine, of course).

In addition to the lifestyle changes, there were the side effects from the medication itself. Keep in mind that I was on 300 mg/day, 200mg in the morning, and 100mg in the evening, a very low dose, compared to some people who are taking 1200mg – 2000mg to control their epilepsy, or they’e on various cocktails designed to reap the maximum benefits of one drug while minimizing the unpleasant side effects of them all. Still, I noticed side-effects that made me very resentful of the drugs controlling my life. I had a transient dizziness, most keenly felt when making sudden changes in altitude, like standing up from crouching, which is not very far to go when you’re only 5′ tall. I also noticed it when turning my head rapidly, as if my skull moved but left my brain behind momentarily. By far more troubling was the fogginess I felt in my brain. I had trouble recalling specific words, having the tip-of-the-tongue phenomenon all too often. My thoughts seemed to slow down. I realize I was very fortunate those are the only side effects I had at this stage, as many people are so heavily medicated as to feel sedated, constantly walk into things, and vomit regularly.

Still, I resented taking the pills and the clean lifestyle they forced me into. My pharmacy never carried them when I needed them, resulting in calls to other pharmacies in the area for those inevitably last-minute refills. I always quaked with apprehension entering the drug store each month, anticipating they’d be out of my pills yet again, and I’d start having tongue spasms all over again without them. They did stop my seizures, though. I had my last seizure in November of 2003, during the night. Mr. Apron lay beside me, sensing something was wrong. I had been asleep, and so had he, so I didn’t have time for my customary warning. I clenched my tongue in my teeth, futilely trying to get it to stop convulsing. This of course, resulting in horrible slurping noises as the saliva built up in my mouth. Mr. Apron, panicking, tried to sit up in bed to see what was wrong. I whipped my arm across his chest, pinning him to the sheets, begging him with my gesture to just stay put. He did, and when it ended, he confided his fear to me. I apologized for my reaction, but clung to him, willing whatever it was to just go away. Of course, that didn’t just happen on its own.

The name given to me by Dr. Hart was that of a neurosurgeon just down the street, a fine surgeon I’m sure, but friends and family begged me to find someone else. Somehow a chain of referrals bounced around the Delaware Valley, up to Providence, where my family lived, and even to Upstate New York, where I grew up and my family kept in touch with a neurosurgeon there. The goal now was to get second, third, twelfth opinions, to see all my options. My parents were saying that I could go up to Boston if I wanted/needed to, and have it taken care of at Mass General Hospital. The name I already had was of a man from Bryn Mawr Hospital, a smallish community hospital. We kept asking around. Somehow, two different sources independently returned to us with the same name. My mother-in-law extended her contacts and these sources both said, “Dr. Eric Zager”. He was a vascular neurosurgeon at the Hospital of the University of Pennsylvania. Big guns. And. AND. AND he was in network. I called for an appointment.

Robin, his inestimable secretary, set me up with an appointment, but told me I had to bring all my scans and records in myself, since I was not yet their patient and they had no rights to my health information under HIPAA. Huh? I obtained the kosher referral from Dr. Lander and set off downtown with a huge folder containing my MRIs, MRAs, and everything else billowing in the wind. This time, Mr. Apron came. He never missed another important appointment. Or an unimportant one, for that matter.

Dr. Zager explained everything as Dr. Hart had done, and went over my options. First, he told me I was very fortunate to have had any symptoms of the AVM at all. Most people never even know they have something so sinister lurking in their brains until they’re in their 40s or 50s and have a bleed. And maybe die. The other great part about being so young was that while my chances of having a bleed in my 20s were low, they’d increase roughly 2% a year. Recovery in one’s 20s from planned brain surgery is much quicker than in middle age, not only because a 23-year-old body is more spry and can heal faster in general, but because a 23-year-old brain is still plastic enough to learn new neural pathways and recover function more completely. I was old enough that my brain had developed basically adult functioning, but young enough that I’d be more able to recover those skills. I have since learned in speech pathology coursework that the 20s are really an ideal time to have trauma to one’s brain, if there is such a time. When one is a child, younger than five, mature language skills have not even cemented yet, and with brain injury, there’s a chance a child wouldn’t be able to learn further; whereas an adult can relearn more easily when the neural pathways have already been established.

I mention brain injury for an important reason. While with any surgery (stop me if you’ve heard this one) there is a risk of infection or complications, with brain surgery this issue is compounded. The body has gone to elaborate lengths to keep the brain isolated in in its little skull bubble. There are 3 protective coverings — meninges — even before the skull: the arachnoid mater, the pia mater, and the dura mater. Even inside the brain, there is a blood-brain barrier which prevents most infections and even medications from entering the brain via the blood vessels. Simply put, the brain wants no intruders, from the inside or the outside. As Frank Vertosick mentions in his book, “When the Air Hits Your Brain,” the number one rule for cracking open any noggin is, “You ain’t never the same when the air hits your brain”. Another of his axioms: “The only minor operation is one that someone else is doing.” Any sort of intervention when it involves the brain is a daunting and scary prospect, even when you put your brain in the capable hands of Dr. Zager.

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