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Part VIII

I continue my brain surgery narrative, reflecting on how I and my friends and family coped with learning about my surgery.  Someday I will be clever enough to put a little thingy on the margin of my blog to redirect you in case you wanted to read from the beginning.  And I’d compile all the brain surgery blogs in one place.   That would be really clever.  Sorry, I’m not there yet.  Here’s the beginning of them.

My mother did not deal well with my impending surgery.  What would “dealing well” actually look like, with regard to a craniotomy?  What she did was reach out to any and all relatives, friends, friends of relatives, and relatives of friends, forming a vast support network.  I guess in retrospect, that was a wise thing to do, and a good way of making sure she did not become isolated with her feelings and fears.  Still, she seemed reticent to discuss it with me.  Maybe there were those age-old hushed voices behind my back saying, “Don’t mention the you-know-what around you-know-who,” and I really didn’t catch on.  I do know that many friends and family were more frightened than I was.  Not that I was in control of, well, anything, but they felt even less in control.  Similar to driving a car, you’re not in control of the drunken asshole who plows into you, but at least you can brake and swerve; whereas in an airplane, you’re completely at the mercy of the turbulent air, high-flying geese, and the drunken asshole who may or may not be your pilot. 

I felt I was doing some of the driving while I was scheduling appointments, racing around getting referrals, and learning about my diagnosis.  Once all the testing was complete (save for the imaging directly before and during surgery itself), and the waiting had begun, I no longer had any control.  Time was just ticking away towards June 22, my selected date. 

Memorial Day weekend, Mr. Apron and I moved in together.  We had had a heartfelt and brutally honest discussion some months before on a snow-covered bench at Haverford College, one of our earlier cheap-date sites, about the level of care I might need immediately after surgery.  We decided that we needed to move in together before surgery, to make things easier.  My family was planning to come stay for a few weeks after surgery, and we’d need guest lodging.  Mr. Apron also decided a first-floor bathroom would be ideal.  Oh, and easy access to the hospital.  Well, 2 of 3 fit the bill.  In the realm of what we could afford in rent on our meager salaries, we settled for the standard 3-bed, 1-bath (on the 2nd floor, of course) twin home (“duplex” in the rest of the country) just west of Philadelphia. 

Again, moving in together under the circumstances we did, nudged us closer to the reality of rehab, of home-care, of changing roles in our relationship.  Yet this, too, was a decision we made on our own steam.  We chose the home, the move-in date, the neighborhood.  We didn’t choose the mice that came with (and overrun) the property, but that’s another epic altogether.  Being settled in our new home, the novelty of co-habitating helped cover up the anxiety of what was to come. 

I wrote in my AVM support narrative about my feelings at this time.  I share with you here an excerpt:

“Finally, five months since the first doctor’s appointment, and t-minus one month till blast-off, I am ready to know exactly what is going to happen to me. I write in the passive voice because I don’t feel as if I am making things happen anymore. When I had to schedule tests and chase around collecting referrals for my pain-in-the-ass HMO, I felt that I was the one making things happen. I had to explain to the technician, and I had to spell out the initials for my diagnosis for the incompetent secretary writing up the referral: “Ay…Vee…eMMMmmm”. That’s the diagnosis, I assure her. I explained everything to my family, even as my dad defined all the medical terminology for me. I was able to choose which friends I told, and how much. Now, it seems surgery will happen no matter whom I tell. And it feels like surgery will happen to me. I don’t have to describe to the surgeons my diagnosis-defying tongue spasms; they can see the messed-up formation. They’re done with me; now they just need my brain. I want to know what they’re going to do to me, the patient, now that I know what they’re doing to It, the AVM.”

For my friends and family, the reactions varied widely.  I was afraid to tell them.  I’d only been working at my current teaching job less than a year, and I didn’t feel like full disclosure of my diagnosis was appropriate.  Many people say they are “a private person”; I think I am, for real.  Not say-I-am and then dump all my family shit on you and complain on and on about my mysterious medical ailments.  I’d noticed a trend when I told people that was enough to teach me to be more vague in my future unveilings.  Either they’d look at me in disbelief (I mean, come on, brain surgery?), and then be stunned into speechlessness, or else they’d mumble trite consolations of “Well, I hope it’s not serious” and “I’m sure you’ll be fine.”  Either way, no one actually wanted to learn about it.  It’s scary.  Who wants to dump that on casual acquaintances?  I started downplaying the seriousness of the whole issue:  “Well, there’s this ‘thing’ in my brain.” or simply, when parents of my preschoolers asked my summer plans, “I’m having surgery and taking the summer to ‘recover’.”  Nice and general.  No need to unload the whole gob.

Throwing up.  That’s what Mr. Apron and I call it, to this day, because we decided that the reaction I get is similar to as if I’d vomited all over someone’s lap.  They’re all pretty much disgusted or shocked, and just want to leave and go clean it off, and to pretend it never happened.  There is no casual, socially appropriate response people learned from Miss Manners when dealing with such revelations.  “Oh, I’m so sorry.”  “That sounds serious.”  “You must be petrified.”  “I’m glad it’s not me.” “Wow, how interesting; tell me more.” 

I actually did get many, “I hope it’s not serious”es.  This sedate effort at minimization and comfort bothered me to no end.  My gut respose, “Why yes, it is serious, actually.  Life threatening.” would again seem too much to dump on someone, and seems, at best, like a plug for pity, which I did not want.

So I certainly was unnerved when the manic wife of my uncle’s college buddy (following?) bid us good night at the door at her son’s bar-mitzvah reception (still following?) , as we offered up our Mazel Tovs, with the following words of comfort: “I’m so sorry!” she wailed. “It shouldn’t have happened to you! You’re too young! You’re too young!”  What, pray tell, is the right age for having elective brain surgery?  I was told by Dr. Zager I was the ideal age.  Somehow, to this hysterical woman, whom I’d just met that day, there would never be right age, a right person, a right situation. 

Probably not the right response.  How did she find out anyway?  And how about my sister’s girlfriend’s mother’s best friend from childhood?  How did she find out?  My father’s cousin in Kansas City?  People I never knew I was related to?  My mother’s telephone tree, no doubt. 

Yet that was her coping mechanism.  Though she couldn’t say the words “brain surgery” or talk to me about her fears, she managed to communicate around the world in ways I could not do with my co-workers.  Her efforts made prayers come in from all corners of the country, and, later, get-well cards as well.  They brought me telephone calls in recovery with people I hadn’t spoken to since I was five, if ever. 

I was able to disclose more details to my real friends, people who would not mind a little upchuck if it meant being in the loop and keeping in touch.  They really cared, as they were able to show.  The 84 e-mails that came in over the week I was in the hospital showed they were not scared away by the seriousness of my condition.  Today I am more candid in telling new friends my brain surgery tale, as people meeting me know there is a “happy ending” to my story. 

Part VII — Medical Student Syndrome

Medical students — and students other health professions often find themselves “contracting” every single illness they study.  As a speech therapy student, I became acutely aware of my disfluencies (a sure sign of stuttering) and word-finding difficulties.  I was sure I had dysphagia (a disorder of swallowing) and suddetly everybody I knew had some sort of speech or language dysfunction.  With the accessibility of the internet, we have all seemed to become medical students and hypochondriacs.

What’s the first thing you do when you get a new medical diagnosis?  Or even before you get a definitive diagnosis, but you suspect something is wrong?  Or someone mentions some illness to you and says you might have it?  Or you keep noticing a distinctive symptom?

That’s right; you google it. 

The internet can be a dangerous thing in the hands of a fearful patient.  The medical community used to keep people in the dark “for their own good” when they had cancer or other life-threatening diseases.  The god-like doctors of that era have been replaced with patient advocates and rehab settings where we ask patients what their goals are.  So while being informed and educated about your disease can alleviate fears, and help patients feel in control of their health, it can also be very dangerous.  Being in the dark has its benefits.  In an internet-accessed world with webMD at our fingertips, no one has an excuse to be uninformed about his/her health. 

After I had my diagnosis, I still had months to stew, months to wait for my June 21st surgery date.  I was at the time working as a preschool assistant teacher.  The kids went down for a nap after lunch between 12:40pm and 2:30pm.  The lights went down, and the kids actually slept.  There was very little I could do, sitting there in the dark.  Sometimes we tried to prepare for art projects, but next to the quiet breathing of preschoolers, the sound of cutting construction paper, or sorting beads magnified in the darkness.  We had blinds on all the windows, and a black-out curtain on the door; even the bathroom light was off.  There was no way to read, to journal, to see knitting stitches – not that I could knit – so I turned to the computer each afternoon. 

I learned about my treatment options, the incidence of AVMs, the possible outcomes – favorable and disastrous.  While statistics on the prevalence of AVMs vary greatly (from 5 to 613 per 100,000), by some estimates, AVMs are as common as cerebral palsy.  Yet no one has ever heard of an AVM.  They’re about 1/6 as common as aneurysms, and people have heard of those.  I knew it wouldn’t be likely to find an AVM support group in on-line, let alone in person, and I needed to distract myself from statistics such as “4 in 100 people with AVMs will have hemorrhaging strokes in a given year”.  I had 2-3% chance of bleeding each year.  The mortality rate from a initial bleed is about 10%, and this increases with subsequent bleeds.  I needed to stop thinking of my AVM as a time-bomb.  I started referring to the potential hemorrhage as “blowing a gasket”, hoping to inject some much-needed levity into the situation.  It didn’t work.  My mother still couldn’t use the words “brain surgery” to talk about what was happening. 

One day, while the children in my care were dead to the world, I found a website hosted on generous bandwidth by the University of West Georgia by a man named Bill Maples.  (http://stu.westga.edu/~wmaples/aneurysm.html) This is a data-free site.  It is a support network for families, friends, sufferers, and survivors of AVMs and aneurysms.  It consists of narratives written by the very same folks in need of support and camaraderie.  I latched on dearly.  Too many stories ended in the death of a loved one, including young children.  Too many stories chronicled the ongoing struggles faced by people discovering new neurological deficits and unending complications caused by the AVMs and aneurysms. 

I sat down that May afternoon to compose my own narrative.  What follows is an excerpt from my AVM narrative I titled “My Summer Plans”:

School can be both a respite and a dangerous place for my thoughts about my impending surgery. While I’m active, I have virtually no down time, and I have to devote all my energy to the school day of a three- or four-year old. They captivate me from about 7:55am until 12:40pm, and after they’ve all brushed their teeth and used the toilets, they hit their nap mats. They get ready to slide into dreamland for about two hours, and I’m left to my own devices, since comatose children require little or no upkeep. And while I’m here, listening to their soft breath, quiet lullaby music, and the gentle whirr of the computer, my own mind has time to wander. Though my work here allows me to escape the reality that goes beyond the innocent thoughts of a preschooler, I still dip my toes in the Real World. The phone rings and it will be Evelyn from Dr. Zager’s office, scheduling my fMRI. I will scoot by second grade and think about Danny, son of the famous vascular neurosurgeon who will slice into me this summer. And sometimes, all it takes is some idle time in the classroom. Two hours is a long time to read, or work on any project in the dark on 18″ preschool tables. It’s even long to stare at a computer and do mindless e-mailing and google research about foam cheese hats. All I need is to type “AVM” into google, look at my daybook and see some medical appointment scrawled in. It all comes racing back.

I will include more from this narrative in the next post.  I would rather include it as “source material” than paraphrase the key plot elements, because it captured the fear and uncertainty of what lay ahead in that moment.  I can reflect from the other side of surgery and recovery, but it won’t be as real as it was that afternoon as I sat, crying into the keyboard as I typed in the dark.

Part VI

Allow me to introduce my neurosurgeon.  And talk about the various treatment “options” I faced.  I find it amusing that people would ask/comment that I had had “elective” brain surgery, but ask you’ll see, I found I had no choice but to treat my AVM.

Perhaps I should back-track and talk about how we arrived at brain surgery as The Choice.  All the websites and the research I’d done on AVMs thus far yielded 3 options on AVM treatment: embolization, radiation, or microsurgery.  Because each AVM is unique in size, location, and involvement of blood vessels, and because each patient is different in age, ability, and health status, no two AVMs can be approached in the same manner.  Some are completely inoperable, while others are relatively easily corrected with little side effects.  It all depends.  That’s where Dr. Zager came in.  Dr. Hart could diagnose me, and even tell me the options that were widely available, but it was Dr. Zager’s expertise that allowed him to look at my MRA and MRI scans and say I needed brain surgery.  He also said that embolization would be used in conjunction with the craniotomy. 

What I love about Dr. Zager is that while he is truly a skilled and great surgeon (look at me, alive, typing, working, etc!), he was also completely honest.  He said that because surgery was his specialty, he looked at the AVM from a surgeon’s standpoint, and also the approach of HUP.  He said quite candidly that if I’d gone to the University of Pittsburgh Medical Center, or Jefferson University Hospital, they would likely recommend radiation, aka stereotacticradiosurgery, aka Gamma knife, aka Cyberknife, because that’s their specialty.

And if I hadn’t trusted my surgeon, I had already read all about radiosurgery, and read enough to know it wasn’t what I wanted.  Not that I wanted a craniotomy, of course.  In radiosurgery, they aim a narrow beam of radiation at the targeted trouble spot (the AVM).  They do this over a period of time, depending on, of course, all the variables mentioned above, and hopefully, over the next few years, the blood vessels in question close up and the AVM disappears.  In order to be so precise with the radiation beam, they screw a metal frame into the head, ‘cause you’ve got to hold still even more than for an MRI, or they might zap the wrong blood vessels. 

The downsides to radiation are that results might not show up for several years; and meanwhile they’re zapping healthy brain on the way into the AVM.  Ouch.  Radiation has long-lasting effects.  That’s why a few treatments can close off an AVM over several years.  Unfortunately, any side effects or deficits resulting from the radiation may also persist for several years, and it’s not unheard of for people to develop new symptoms (from the radiation, not from the AVM itself) years after their last treatments.  Just ask a cancer survivors who has gone through radiation.  It changes the structure of the cells permanently, and can have chronic effects. 

Next up for consideration is embolization.  Essentially, the procedure involves threading a teeny catheter up through a groin blood vessel and into the brain (or wherever the AVM is), and inject a substance to close off the blood vessel where the AVM is, mimicking an embolism, as might occur during a stroke.  Sometimes they inject glue, or a plastic substance; other times they use coils to shut off blood flow.  As the blood vessels are shut off, depriving the AVM of its blood supply, it becomes smaller or goes away.  In my case, Dr. Zager wanted to do an embolization first, to shrink my AVM, which would then make it easier for him to do brain surgery.

Brain surgery, aka craniotomy, is exactly what you think it is.  Of course, no one could really prepare me for what the side effects and or consequences could be.  Just as each AVM is unique, so is each surgery, and each subsequent recovery.  Due to the size and location of my AVM, Dr. Zager could try to predict where I might have deficits, but it was little more than a (highly) educated guess.  My AVM lived its happy tangled life in my right brain, near the area of the motor strip controlling my tongue and face.  Therefore, surgery would mostly likely affect gross motor control in the left half of my body, maybe some balance issues, or more.  He did assure me that since the left brain is the hemisphere controlling language abilities, that I would not get aphasia; more likely it would be dysarthria, a speech impairment characterized by slushy articulation because the muscles or nerves of the speech-producing body parts aren’t as strong or able to produce the quick movements we usually need for speech.  That was a huge relief, actually.  Having studied Broca’s and Wernicke’s aphasia in my psycholinguistics and psychology classes, I knew I needed none of that.

Broca’s and Wernicke’s are so-named for the physicians who discovered people with these odd deficits.  In the case of Broca’s, Dr. Paul Pierre Broca discovered similar impairments in two patients who had lesions to the same part of the brain, specifically the  posterior inferior frontal gyrus of the left hemisphere of the brain.  Neither patient had fluent expressive speech, but both retained the ability to understand virtually anything said to them.  Of course, back in the 19th century one had to wait until autopsy to find out which part of the brain had been eaten away by syphilis or shattered by a railroad spike, but when he compared the two brains post-mortem, he discovered this region, and assigned the ability of fluent speech to it. 

Wernicke’s area, in the posterior part of the superior temporal gyrus of the left hemisphere, was discovered to be responsible for understanding speech, also by studying patients who presented with similar symptoms and deficits.  This is called fluent aphasia, because a person retains the ability to speak fluently, but the speech may be filled with jargon or just not make any sense.  For example, “I went to the breakfast, but it was too kleton for me to go diving.”  People also have tremendous deficits in the comprehension of speech. 

Having too much knowledge can be a dangerous thing, when one knows about aphasia and acquired language impairment.  I was very grateful my AVM was in my right hemisphere!

The fourth option, which was discussed but not considered in my case, was doing nothing, or “watching and waiting”.  For people with very small AVMs which are not causing any problems and not appearing to grow, this may be a good option.  For people with large, inoperable AVMs, or AVMs which involve major blood vessels, for whom surgical intervention would certainly endanger their lives, watching-and-waiting may be the only option.  In my case, we had evidence from my case history that my AVM was making trouble (causing tongue seizures), and had grown (the seizures were now taking part of my face, too).  So surgery with embolization was chosen.

I was given the opportunity to choose my own surgery date.  Because my AVM had not bled yet, and I was on medication to control the seizures, I was not in any imminent danger of a bleed.  Over time, the risk of a bleed increases, about 2% a year, but waiting a few months was not going to change my risks in any drastic way.  Of course, now that I knew what was inside my head, and what it was capable of, I felt like I was a walking time bomb.  I needed to have the AVM taken care of, so I chose June 21, 2004, giving myself a week to tie up loose ends after the school year ended, and the whole summer to recover.  All the logistics were figured out.  I needed no more tests until the actual surgery, so all I had to do was sit back, relax, and prepare myself emotionally for the reality of brain surgery.

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.

Getting a migraine at 6pm when it’s too late to take the real meds — those with caffeine — because, due to my low caffeine tolerance, it’ll keep me up at night.

Knowing now, as I prepare to go to sleep, that Advil will only “take the edge off” for so long, and I”ll wake up at 4am with a pounding head, trying to stay in bed till 6am. 

Being bitchy to Mr. Apron because I cannot tolerate noises, smells, bright lights, dog barking, or talking about anything serious, and I just shut down and get bitchy, which isn’t fair to Mr. Apron because he shouldn’t have to suffer from the migraine, too.  But he does.

Having a migraine.  That’s what sucks.