A Diagnosis, of Sorts

Well, folks, the verdict is in. Over the last month and a half, Mr. Apron and I have been subject to all sorts of painful, awkward, and intrusive testing to try to pinpoint the cause of our infertility. Today, I met with my doctor for a follow-up, and I found out that we are completely, hopelessly, and wholly normal. That’s right; everything tested within normal limits, which means our diagnosis is now the ever-so-helpful, nothing-for-it Unexplained Infertility. Which is a medical way of saying, “We don’t know what’s wrong with you, so we can’t really do any interventions that would ‘fix’ it.”

Which is kind of what I heard from my GI doctor a month and a half ago when I got the results from my diagnostic testing. Well, it’s definitely acid reflux, which I’ve known and managed for the last 9 years, and it’s definitely gastritis, which means my stomach is inflamed and irritated, but it’s such a non-specific diagnostic indicator, it essentially means, “We don’t know what’s wrong with you, so we really can’t do any interventions that would ‘fix’ it.”

Isn’t modern medicine fun?

Part of me is insanely relieved that there are no structural abnormalities, no glaring issues for us to overcome or circumvent or manage. I made the mistake last night of watching, on a coworker’s advice, “One Born Every Minute”. It’s Lifetime program, so right there that should be a red flag that indicates, “This is for hormonal women who want to languidly drink wine while they curl up on their couches and bemoan their ticking biological clocks.” Yet we cued it up OnDemand, since we’re no longer afraid of our cable box, and we watched. Into each of the women’s (well, couples’, but really? It’s all about the women. It’s on Lifetime, for goodness sake) stories TV producers must inject a healthy dose of artificial drama, to be accompanied by violins playing dissonant intervals and teaser close-ups that make you think something has – gasp! – gone wrong. Last nights’ episode profiled a 33-year old woman who has osteoporosis, a 22-year-old woman who is afraid of hospitals and needles, and a 32-year old woman pregnant with twins from IVF, who has a history of repeat miscarriage and whose belly is so distended she could barely stand upright. So of course there is a teaser for the frail woman saying, “My hip hurts!” which the whole medical team says they’ll take into consideration but ultimately they just ignore. There are repeated segments of the 22-year old freaking out about her IV, the lidocaine, the epidural, the medical equipment. And there is selective broadcast of the OB/GYN’s warnings about the possibility of bleeding with the twin 8-lb babies and the women’s hyper-distended uterus.

And everything went fine. Reality television has to create drama where there really isn’t any, has to selectively film segments that fit into a particular “story line”, and has to give us a happy ending. Why? Because it’s Lifetime, dammit, and that’s what Hallmark Hall of Fame movies have taught us to expect.

My heart of course went out to the woman with twins, who had lost a fallopian tube in her last miscarriage, and who had gone through 4 IVF cycles to conceive the couple’s 2-year-old son. She had something truly wrong with her, something they could fix. While the others just had TV karma, or happened to walk into the hospital at the right time, this couple actually had real infertility issues.

And that’s the other part of me, the part that is longing for a diagnosis, so I can know my enemy, research my enemy, and take steps to vanquish my enemy. So I can be in control and in action.

Back in 2004, when I received my AVM diagnosis, I had been through rounds of testing. My EEG had come back normal, and I’d been carrying around my MRI films for weeks. (This was, amazingly, before the health systems – even major teaching hospitals – had digitized films, and they made patients, like yours truly, carry around the films from lab to doctor to hospital to surgery. It was, strangely, always windy when I was carrying my brain scans, and they flapped about like a sail as I walked from my car to the medical building.) When I finally had an answer, had an explanation, and one that made sense, no less (Since my AVM was seated on the part of the motor cortex that corresponded to my face/tongue, my tongue seizures at once had validation, seen in graphic detail as a dark blob on my MRI.), I was relieved. I did not cry; I did not withdraw. I excitedly talked with Dr. Hart about the discovery, grateful to have an answer, and one that made sense to me, with my background in linguistics and neuroscience. I particularly enjoyed the ego-boost when Dr. Hart asked, “And what is it you do for a living?” and I replied, “Oh, I teach preschool.” Sure, there was Googling, and fear of the unknown. There were more tests, many tears, and a long unfamiliar road ahead, with an uncertain outcome. But I had factors on my side. At only 23, I had youth on my side. Anatomically, I had location and size on my side. My AVM was close enough to the surface, at an easy-to-access place, and it was only 2cm x 3cm. It was thankfully on the right side of my brain, so my language areas were virtually assured to be unaffected. And I had a doctor on my side, in the form of unabashed faith in a neurosurgeon I respected and trusted.

I won’t say that it was something I could face again, or that it was straightforward relief at knowing what was wrong, and working to fix it. But I will say that a diagnosis can be a welcome thing when one is seeking answers.

The only answers I got today opened up one more question:

So if everything is normal, why aren’t we pregnant yet?

When Google is not your Friend

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 21^st 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.