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I have a perfect brain. My mind may be raging with pregnancy hormones, wrestling with self-esteem issues, and dealing with boundaries between my mother and me, but my brain is perfect. There are not many who can say that and know it empirically, but I can and I do.
I was born with a malformed brain, with a vascular anomaly that was fixed 7 years ago today. Seven years ago, I was in surgery for 9 hours, a surgery that left me with physical and psychological scars. My head has a narrow band almost from ear to ear where hair does not grow. My head has a funny ridge of stapled skull bone like two tectonic plates at a fault line. My smile-on-command-of-photography will never been symmetrical again. My left hand and leg are weaker than my right, if only barely. But I’ve come a long way since 7 years ago, when I woke up confused and bloody, with my left arm paralyzed, and speaking in a Mickey Mouse voice.
Facing surgery and recovering were two of the hardest things I ever had to do, yet I did not do them alone. Through the experience of my brain surgery, Mr. Apron and I faced a momentous trial in our fledgling relationship, a trial that could have scared any normal boyfriend away. Yet mine, my boyfriend of 16 months (only 14 since we had met in person), was side-by-side with me in my hospital bed, snuggling up against all the medical odium that was this little girl he had met online. My boyfriend was so committed that the resident who spotted us together in the Stryker bed remarked that having one’s husband next to her was the best therapy there was.
As we were dating, Mr. Apron told me of his previous relationships, of the girls who came from broken homes, of the girls who had psychological and physical issues, of the one who was allergic to sugar, and ofthe one whose mother was addicted to painkillers. He told me he unwittingly sought out these “broken” souls trying to fix them. Realizing it was an impossible task, he vowed to reform, and date only girls who were a mite more stable.
As we embarked on our own relationship, he thought he had finally snagged a girl who didn’t need to be repaired by doting or sugar-free cakes. Instead, he found a girl with a deep, dark cranial secret. In this case, however, it was a secret that could be fixed, that, to this date, has been fixed. I have not had a seizure since November 2003. I have not seen my neurosurgeon since 2006, when he told me my brain tissue had effectively “filled in” around the surgical area. I have not seen an OT or a PT since August 2004, when my insurance company declared me “cured”.
Today is my “brainniversary”, a day my family celebrates with understated exuberance. We take a moment to remember the solemnity of the day, and to gratefully praise the successful outcome. We all know what could have happened on the operating table, or soon afterward. We all know how fortunate I am to have recovered as much as I have. And we all know how fortunate I am to have had the support system that will carry me into the next adventure of momentous proportion – becoming a mother of twins.
I came across a scrap of paper today at work, on which I had scrawled several ideas for essays/blogs about brain surgery.
- musical intelligence — I have tackled this one
- the whomping stick (about my cane) — ditto
- “throwing up” on people (telling them about my surgery)
- PT and OT
- epilepsy vs. alcoholism
That last one I’ve never addressed in any form on this site. I’ve tried to explain it to people, but without much success. Here’s the idea: in alcoholism, a person will forever remain an alcoholic, even after years of sobriety. Once an alcoholic, always an alcoholic, because he could go back so easily, slip up so easily, and send himself back down into addiction.
As for epilepsy, I recall Dr. Zager or Dr. Hart saying (I remember it so well, I can’t recall which doctor actually said it) that once the brain has learned to seize, there is always a risk that it will seize again. The more time the passes seizure-free, the lower the risk of another seizure, the longer one is likely to stay seizure-free, but there remains a chance, a possibility of relapse into a seizure.
So here’s the connection: once the brain has learned that specific “behavior” — be it addiction to alcohol, or seizures — there is always a change it may relapse, especially if one does not avoid triggers, like alcohol, sleep deprivation, caffeine, and dehydration — for epilepsy, or well, alcohol, in the case of alcoholism.
And my question has been, if I had epilepsy once (or for 8 years), will I have epilepsy for the rest of my life? Does my insurance company think so? Do I? Do my doctors? Am I “cured” of the underlying physiology of the AVM — all indications say yes — yet do I still carry the label of epilepsy? In the age of people- first language, I can certainly escape the designation of “epileptic”, but can I so easily leave behind the diagnosis, the condition, the lingering possibility of a seizure, and epilepsy itself?
Mr. Apron and I sat down at the kitchen table last night to enjoy our dinner of Exploding Pizza, the kind of crust that comes in a tube, and when you peel back the paper it kind of pops, and therefore contains a warning to point it away from your face. We call that Exploding Pizza. On the table was a brochure for Piffaro, a musical ensemble which performs renaissance and baroque music using period instruments, such as recorders, harps, shawms, and, my personal favorite, sackbuts. As I glanced at the various performance descriptions for 17th century Spanish music, I spied a familiar name in the November performance – the husband of a woman led my Early Music Ensemble in college. He came in a few times to support those of us brave enough to take on the shawms and dulcians, which are sort of proto-oboes and proto-bassoons, respectively. We obviously had to go.
“I love taking you to these performances, buddy,” said Mr. Apron as he made a mental note to take me to these performances, “but I hate that it always makes you so sad.”
My brain surgery left my body in less than optimal condition immediately after the surgery. While I’ve pretty much healed up in as much as spontaneous recovery and physical/occupation/speech therapy can do, there are subtle, sub-clinical deficits I still retain. When in the medical model, one refers to body function, whether it’s strength, range of motion, or activities you can do, in varying degrees of impairment, such as mildly, moderately, or severely impaired. In my case, I probably fit the description of WFL, three marvelous letters which stand for Within Functional Limits. This says, essentially, “This person or his body part is suited for all normal functions.” Not quite as gratifying as WNL, Within Normal Limits, WFL simply allows the medical professional to give a cursory assessment and determine that nothing significant is standing in the way of ADLs, (Activities of Daily Living): those happy life skills like dressing oneself; loading the dishwasher; using a spork; and running for/signaling at the SEPTA bus leaving the curb.
I am WFL. My body parts all work WFL. My once-paralyzed left arm, hand, and all five fingers are WFL. I can buckle my seat belt, cut up food with a knife, fasten a necklace, and open a door. My lips/mouth/tongue are WFL. I can chew food, move it around my mouth, form it into a swallow-able glob, and swallow it. I can find pesky pieces of lunch hidden in my cheeks, and I can use a napkin to locate detritus on my lower lip. I am WFL.
If you probe deeper, maybe compare pre- and post-surgery, you’ll see deficits. Maybe not in everyday function, but in measurable impairments. I have very little feeling in my lower lip, chin, and lower cheek on the left half of my face. My left fingertips perceive touch and temperature ever so slightly differently than those on my right hand. What this means for daily life is that sometimes I do miss a piece of food on my face, or drool if I’m sleeping on my left side (which I wouldn’t feel). My left hand might not be up to carrying a dresser long distances. All these differences would not matter for regular old ADLs, but they do matter for a musician.
Immediately after my surgery, my father, a psychiatrist who should have a good handle on brain function, approached my neurosurgeon with some concern regarding my “musical” ability. Now, in this century we’ve moved away from phrenology and believing concretely that lumps on the head/brain correspond to characteristics, strengths, and abilities, but there is emerging research into localization of some functions in the brain, made possible with fMRI, imaging which lights up in brighter colors which portions of the brain are active during certain tasks. I read an article once where the brain surgeons had to do surgery on a professional violinist while she was awake to make sure they had localized and avoided disturbing the “music center” while they operated. They stimulated portions of her brain and then asked her to play the violin to map out her brain during surgery. So my father, with his concerns about my “music center” was not completely out in left field. In fact, there’s a study at Harvard University which has discovered that certain parts of the auditory cortex are sensitive to aspects of music.
In the hospital I could do very little. I couldn’t sit up for any length of time without getting very dizzy and causing my already massive headache to throb even more. Finally, towards the end of the week I spent as an inpatient, I felt well enough to sit up. I tried to spend most of my days sitting up to prove to the nursing staff how much my constitution was improving so they’d let me go home.
My mother plays harp professionally. She plays a lot of weddings and church-related events such as midnight masses and Christmas concerts. She has also played for Mothers Day teas at yacht clubs, a Memorial Day event at a cemetery, and concerts for children. In addition to her concert-sized harp, she has a more portable version, which she brought with her to the hospital, to cheer me up, keep us all busy, and entertain the ward with strains of “If I only had a brain”. In an effort to appease my father’s worries, and for want of something to do that didn’t involve vision (I had double vision immediately after surgery which conveniently went away as soon as I made an appointment with an ophthalmologist 8 weeks later), I asked for the harp. Balancing it on the edge of the bed, cradling the harp between my knees, I propped myself up. My useless left arm lay at my side, but I was able to pluck out “Twinkle Twinkle Little Star” with my right.
Behold! They had spared my “music center”! Not only had the post-operative angiogram shown no residual AVM; they had successfully left intact my musical abilities. Or so it seemed. At least my father was relieved.
Unfortunately, I did not have so much success with my other instruments. When I had regained a little function in my left hand (I became strong enough to lift a spice bottle), I tried the clarinet and the bassoon. My embouchure, the shape of the mouth and lips when playing a wind instrument, was weakened not only by months of disuse, but also was significantly affected by my new deficits. I couldn’t keep a seal on the mouthpiece of my clarinet, and spittle flew out of the left side of my mouth. Bassoon was no better. Even as the months wore on, and my strength improved measurably in therapy, I had no more success. Every time I would pick up my bassoon, I would collapse in tears, wailing as I sat in the living room, apologizing repeatedly to the beautiful (some might argue) instrument. My left hand, as “functional” as it was for the physiatrist, was still too weak to even hold the heft of the 7 pound instrument, let alone support the instrument with my palm and move all five fingers in rapid precise movements. Websites will tell you that bassoonists don’t actually have to feel the weight of their instruments because they’re supported by seat straps. While it’s true they’re not lifting 7 pounds constantly, they do have to hold up the top-heavy instrument as it leans ever so slightly to the left.
I can do all of the range of movement exercises with my facial muscles, and my left hand strength is now pretty good for a non-dominant hand, but it is nowhere near agile enough to play a musical instrument. The rapid movements, the precision, the muscle memory needed for arpeggios, for reaching all of the 17 keys on a bassoon, for sealing the holes of the instrument…I just don’t have those abilities.
When we go to a concert, be it classical music, early music, Indonesian music, or any other genre or instrument I have played, I get sad. I think of how I used to play, used to be in ensembles and have concerts, and go out for Dairy Queen afterwards. I have been in marching bands of 100 pimply teenagers, chamber orchestras made up of physicians, school bands, wind ensembles, early music ensembles, quartets, and summer orchestras large enough to have 8 bassoonists and 40 flautists. With varying degrees of proficiency, I have played piano, recorder, harp, bassoon, clarinet, bari sax, dulcian, krumhorn, viola da gamba, cello, and gamelan (Indonesian percussion) instruments.
I wish I could pick an instrument back up. It’s been so long now that I’d have an uphill battle to relearn the instrument as well as reteach my hands how to play. I avoid even trying. I keep my bassoon locked up in the basement, where I don’t have to think about it. When I pluck out notes on a piano to help Mr. Apron learn his music for plays, I keep my left hand in my lap, ashamed to try to use it. It would be so hard now that I don’t even try. That if I did, it would be so difficult I would get frustrated and give up. The sadness also stems from the fact that, if you hadn’t gathered from my list of instruments and ensembles, music was a pretty big part of my life until my surgery. It’s also a pretty significant part of my family’s life.
My mother, as I mentioned, is a harpist. She is also a pianist. My brother dabbled in drums for a while before returning to piano, his first instrument. Last time I checked, he had completed his college majors in physics and music, ripping through sonatas and pop songs at the speed of lightning. My sister, too, started with piano, and branched off into brass, picking up the trumpet, mainly, but also trying out the euphonium. She also plays the shofar annually at my parents’ synagogue’s High Holy Days celebration, blasting the announcement of the holiday from the ram’s horn for all to hear. My father, though never quite reaching proficiency on the piano, stuck with woodwind instruments. He started with clarinet, as did I, and then moved to bassoon, as did I. I followed his path, waiting for my hands to grow even a smidge more so I could play the bassoon like my father. My first ensemble was a duet with my father. He had put down his clarinet since probably junior high, but dug it out of my grandmother’s closet to play when I started playing in 5th grade. And when I picked up the bassoon, he dusted his off from where it had lain, dormant under the piano, since I was born.
Though the years I’ve had many “clarinet buddies,” playing duets with me, or starting impromptu ensembles. We helped each other improve, and I may have actually done more practicing when playing with a friend. As I moved into high school, I found clarinet buddies in marching band or other low woodwind players in orchestra to be my bassoon buddies (I was always the lone bassoonist). In college, I never quite found any bassoon or clarinet buddies. I couldn’t figure out how to socialize during the breaks at orchestra rehearsal. I was just a shy freshman, the 3rd bassoonist in a section meant for 2. It didn’t seem like much of a loss when I quit orchestra, and, subsequently, bassoon lessons. I hadn’t been motivated to improve in a long time. Away at college, I missed the camaraderie of having music buddies. I didn’t have the motivation to play, or any of the benefits that had always come with music for me.
As Mr. Apron and discussed music last night, I started tearing up. I guess he thought I was again regretting that I have put down my instruments and am afraid to try again. It was all this talk about clarinet buddies. I was realizing that neither Hannah, nor Nadia, nor Jamie, nor Alison, nor Sandy were my first clarinet buddy. My father, who himself had put down his instruments when I was born, was my first clarinet buddy. Though we had built a pink dollhouse together for my 3rd birthday, and gone skiing together when I was 6, the most consistent and longest lasting activity we have shared is music. Music did not care if there was 24” of powder on the ski slope. Music did not care if we had wrist-guards while rollerblading. Music did not leave sawdust in our eyes or require Mickey Mouse ear protectors. Music is something my father supported me in for many years. I understand his fear of my losing my music because of my surgery. He hadn’t realized then that my deficits would not be in the region of the brain that is sensitive to rhythm, melody and harmony, but in my fingers and my discouragement.
We will go to that early music concert in November, and I know I’ll get sad. I’ll also enjoy seeing and hearing the beautiful instruments that I used to hold and play. I’m not sure where I’ll go with music, or if I’ll even persist with an instrument long enough to find out if it’s even possible to play again. I’m still fortunate to have grown up playing and listening to the tunes of my family, in the house where we referred to the living room as “the music room.” The music room was where I danced at age 4 to my mother’s harp practicing, where I set up a crude drum set for my brother made out of oatmeal drums and pie tins, and where my father and I played many hours of duets together.
More than physical impairments, and all the excuses I let my body and brain make for my failure to try again, is motivation. Maybe again I’ll find motivation in one of these concerts – an open call for a mediocre bassoonist, an invitation to come try out the bass recorder, a song I can’t let go of – or in another source. Maybe Mr. Apron will find a duet for banjo and something-I-used-to-play. Maybe I’ll meet someone who inspires me and wants to have jam sessions.
Or maybe we’ll have to grow me another clarinet buddy.
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.
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 webmd.com 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.
Part I: From the Beginning.
I originally started this blog to find a space to vent about work and our impending home-ownership travails. I had also been guest-blogging on Mr.Apron’s site and needed to find my own URL. Now that the school-year has ended, and I have two solid weeks of office time with no children before we gear back up for our short summer session, I’d like to embark on a new journey with you.
Back on June 22, 2004, exactly five years ago today, I underwent brain surgery at the Hospital of the University of Pennsylvania to correct a congenital defect in the arteries and veins in my brain. Today I celebrate my fifth “Brainaversary.” I have always wanted to write about this experience. Let me correct that – I have always needed to write about this experience. Heading into the hospital, I swore to myself I’d remember and write down each detail, so I could never forget. Well, as anyone who has ever had an extended hospital stay can tell you, time just morphs into this indistinct glob of hours and days and cranial nerve tests and orientation tests and blood tests and horrid meals. Due to my complications, I could not write down my thoughts as they were occurring. Mr. Apron, who was then “only” my boyfriend, kept my friends and family updated through e-mails on his infrequent breaks from my bedside. There was no Twitter, and blogs were just in their infancy, or I might have been able to create a blog like Katie did here: http://overflowingbrain.blogspot.com . Alas; I was cut open too early for real-time blogging or twittering, but not too late to fill in my story now.
I was always the healthy child. I never had ear infections, never took any days sick. I had perfect attendance for 5 years running in elementary school, racking up a pile of those cheesy cardboard certificates year after year. While my brother suffered to find a solution to his eczema, and my family struggled to keep his asthma and allergies under control, I was healthy. When my sister needed glasses in 3rd grade and developed a milder form of asthma, I remained healthy. That was my role in my family. No cavities, no broken bones (yet), no cause for alarm.
I can’t recall the first seizure, but I remember one of my earliest ones, when they were still small enough to hide in public. I was eating lunch with friends out on the softball field during one of the last days of 9th grade. My tongue began to twitch, and I had to put down my bagel. I’d noticed some beginnings of a pattern to when these tongue spasms started. It was often when I’d neglected to pack a drink with my lunch, or neglected to drink it. But these early spasms were so small, so brief, I only had to close my mouth, stop eating for a while, and then I could return to lunch with my friends. Another lunchtime, this time in the cafeteria, I warned my friends I wouldn’t be able to talk for a minute – no further explanation – and I would be okay. My friend Moira asked me to show her, so I opened my mouth. They were greeted by a writhing, pulsing tongue muscle. “Gross! Put that away!” And I did. I never showed anyone again.
Throughout high school, and college, when I’d feel a tongue spasm coming on, I’d run to the nearest restroom. It would only be literally a minute, and then my tongue would stop writhing. I’d clear my throat, do some tongue calisthenics to make sure I had control over it again, and re-enter society. I was very fortunate I had warning. I could feel this slight tickle in the back of my throat, which would make me swallow hard a couple of times, and I’d have ample time to run away. I’m hesitant to call my warning signs an “aura”, which is what many people with epilepsy experience before a seizure. It usually manifests as a perception of a light, a smell, or strange thoughts. Mine, I believe, was more physiological. Nevertheless, it allowed me a short getaway time.
I’ve run away from theatre rehearsals, bassoon lessons, shopping excursions, lunch times, and many social situations. In the rare times I’d get “caught” with no known bathroom to run to, I’d tell my companions, “In a short time I won’t be able to talk for about a minute. I’ll be okay.” No one really freaked out, because I could hide it in the beginning. I even hid it from my own mother when we were at Bread & Circus. As time went on, the spasms got bigger. What I can safely assume was happening in my brain was that my AVM was getting bigger, though no one knew it yet. What had started as my tongue’s twitching evolved into a focal motor seizure which “took” the left half of my face as well. The left corner of my mouth curled up uncontrollably and my cheek participated, too. Yet I still told no one. Not any of my roommates, not my college boyfriend of 18 months, not anyone in my family. People today marvel about how I kept my secret. Roommates ask me how they could have lived with me for a year and never noticed my stealth runs to the bathroom.
One time, as I was having a physical from a new doctor in preparation for my new job teaching preschool, I mentioned my tongue spasm as an aside. Here I had taken this huge leap, preparing myself to be questioned and prodded and taken down the road to “follow-up”. It took me a lot of gumption to even mention it to this doctor. What did he say? He dismissed it, telling me he could put me on some drug just to stop it, but that it was nothing. So I ignored it again.
Another time, I was visiting with a friend in Chinatown, a medical school-bound friend, incidentally. I was trapped between her and the Peking ducks in the windows when I felt the spasm coming on. By this point in time, Christmas 2002, it had become too large to hide in my mouth, and she saw. She saw, and she knew just as I believe I knew, that something was really wrong with me. “You know,” she said when it was all over, “you should really see a neurologist about that.” “I know,” I replied, because I think I really did.
Not until my future husband saw it did I begin to take action. This was a man I had moved across the state to be with. A man for whom I had sought out jobs in his area code, sought out apartments in his county. A man who had captivated me from 312 miles away over jdate.
(To be continued)
SLiPs of the Tongue 