Two years is a long time to have a headache… especially when diagnosis is always just out of reach.
I’ve landed myself an appointment at the University of Colorado Hospital. Although this will be my fourth neurologist, none of whom could figure out what was wrong with me, this appointment feels important somehow. Like I am taking a step up in the medical world: the University of Colorado Hospital is a research hospital.
My last neurologist’s parting advice was that, in his opinion, the only thing left for me was to consider a surgical option, a neurostimulator. He made it seem dire, as though this was a sort of Hail Mary, my last chance at any kind of relief for the constant pain I’ve been in since my headache started. But surgery sounds scary and permanent. The idea that a pacemaker type device would be put inside my body, that wire leads would be placed in my occipital and/or peripheral nerves is terrifying. But the idea is also action-oriented, and I so desperately crave something to be done to help alleviate my pain—which has been unremitting these last many months—that I am willing to try anything.
So for four months, I wait: an eternity of excruciating tedium.
My baseline headache, that pesky pain behind my right eye, is a constant companion, and the days tick by slowly. I do my best to keep slogging through my daily routine. I’m doing freelance work as a writer and editor, while also looking for a part-time job to supplement my income. The problem is any job that can lead to any kind of over-exertion can cause my pain levels to rocket off the charts, putting me out of commission for hours or even days.
Some days, my headache spikes to an extreme level. My head throbs, I can’t see, I’m nauseous and dizzy and can’t be on my feet any longer than it takes to get up and go to the bathroom. My whole body aches and tingles, waging war against me. I don’t get out of bed. On those days, the wait is unbearable.
Then, the day finally arrives.
My mother and I make the 40-minute drive out to the big medical campus in Aurora. It’s overwhelming. The hospital parking garage is so full we park on the very top, out in the open. It’s a March day, so it’s chilly, but the sun is shining. As I walk inside and find my way to the headache clinic, I think: This place has to make a difference. Has to get things done. I’m confident that I have found what I’ve been searching for. A temple for the answers I’ve been seeking.
Then, I meet my doctor. Or I should say my Fellowship Resident.
I go through the complete history of my headache saga, which feels so rehearsed I could be performing a soliloquy.
“When did your headache start?” he asks me.
“October 28, 2013.”
“Any precipitating event? Injury? Illness?”
“No.” I twist the strap of my purse in my hands. The truth is, I woke up with the initial pain behind my eye that morning, and it hasn’t gone away since.
He scrolls through my chart on the computer. “I see that you’ve had MRIs and they’ve come back normal. Any other tests?”
“I’ve also had an MRA. And an EKG and heart ultrasound. And a lumbar puncture. Plus, all the blood work.”
I look down at my feet. He has the answers right there in my chart already. Asking me about all of this feels like he’s rubbing it in… like I’ve failed a test or something.
“Yes,” I force myself to answer.
He writes a few things down on the paper I handed him when I came in: a survey asking me about my pain levels for that day.
“Can you give me a list of the treatments you’ve tried?” my Fellowship Resident continues.
Maybe it’s just helpful for him to hear me list it all out instead of digging through months and months of medical history. I try to see if I can remember them all. The list goes something like this: “Dilauded, Imitrex, Verapamil, Topamax, Gabapentin, Nortriptyline, Propranolol, Lithium, Botox, Nerve blocks.” He takes more notes and I feel less like a dramatic actor and more like an eyewitness for some terrible crime.
When we finally get to a stopping point, he asks me: “What do you hope to get out of today’s visit? Are you just looking for a second opinion?”
My stomach drops.
“I was under the impression that I was here for a surgical consult on an occipital nerve stimulator,” I stammer.
“Oh,” he breathes, and his eyes widen. That may be why I’m here, but it’s not why he’s here. “I don’t do that procedure. I’m not sure anyone here does.”
I feel the tears welling up in my eyes and I bite my lip.
I don’t want to cry because once I start, I’m not sure I can stop. Also, he’s young and I like his red beard and glasses and he’s not wearing a wedding ring. This should not be something I’m focused on in this moment, but I notice these things and the thought runs through my head anyway, and now I just feel worse about potentially making a scene in front of this potentially-eligible wrong doctor bachelor.
So, I don’t cry. And I don’t explode at the absurdity of this situation. I take a deep breath and explain how long I’ve been waiting for this appointment, how much hope I’ve pinned on this day. I can tell he is sorry, and perhaps a little embarrassed. He tells me it was probably a clerical error somewhere in the referral process. Then, he exits to discuss the situation with his supervisor.
He leaves the door cracked open. I sit for a few minutes in silence, texting my mother who’s sitting in the waiting room, explaining what has just transpired. I can feel her anger the way you sometimes can, even in a text, no exclamation points required. I am shaking with disappointment. Just not crying is taking real physical effort. The fluorescent lights of the exam room bear down on me, as they always do, and I can feel my headache pain begin to flare under the surges of overwhelming stress I’m suddenly feeling.
Then, I hear them in the hallway. It’s almost an out-of-body experience, hearing him recite my story.
Once again, I am my headache. No name, no distinguishing features, just a list of symptoms.
26 years old. Debilitating headache. Almost two years. Quality of life greatly affected.
This is what I look like on paper, how my very complex situation, my life, is summarized by medical professionals. It makes me squirm. I’m a child listening to her parents talk about her behind a closed door. More than that, once again, I am my headache. No name, no distinguishing features, just a list of symptoms.
When he returns, I can feel my face and chest flush with an awkward sort of embarrassment, as though I’ve been caught peeping.
It turns out there is a doctor who knows something about the procedure, who might be able to help me, or at least provide me with some information. He tells me he will refer me right away and that I should go ahead and make an appointment, pending approval.
It turns out I can’t make an appointment. I have to wait for my referral to be processed once again. They’ll call me. After a week of hearing nothing, I call them. The earliest I can get in to see this new doctor is another three months away.
So begins another season of waiting.
And when that appointment comes, after three months of waiting, this next doctor will tell me that I don’t need surgery. He’ll say neurostimulators aren’t a good option for any headache sufferer, and will present me with compelling evidence to support why he thinks so. And so I start all over again: a circular path of treatment after treatment that never goes anywhere, and never gives me relief.
My headache will continue. Leaving me just one choice: on this long road, I must somehow make peace with my pain. Because I don’t have a choice.
Awaiting Dr. Right
Today, as I wait for my newest referral to yet another specialist and try to play games with Medicaid, I think back about my one time meeting with the Fellowship Resident.
He was the wrong doctor on that particular day because a clerical error put me in his office instead of the office of the neurologist I was meant to see.
And, that neurologist has perhaps turned out to be the wrong doctor because I have not responded to a parade of treatments the way he had hoped.
Similarly, my third neurologist–the one who referred me to my red-bearded resident–was Dr. Wrong, because he ran out of ideas to treat me.
And the one before him was Dr. Wrong too.
It sometimes seems like being bad at dating, because there’s certainly a pattern. And the pattern would suggest, at times, that there is no such thing as Dr. Right. At least not for me. What hope do I possibly have?
But I can’t give up. Even when it feels foolish or naïve, this optimism is also a fundamental part of who I am. And I need it. I need it to get out of bed in the morning and keep going despite the fact that I can’t remember what it feels like to not be in pain. And I don’t think it’s wrong to think that the right doctor is out there.
I may not have met Dr. Right just yet… but I’ve met pieces of him.
Because while my Fellowship Resident might have been the wrong doctor that day, he still treated me with concern and compassion. And he’s not alone: my primary care physician, who has been my doctor for over 15 years, has stuck by me throughout everything, supporting me and validating my suffering. He never downplays what I experience, what it means to be in pain every minute of every day, or the effect this has on me physically and emotionally.
So I may not have met Dr. Right just yet… but I’ve met pieces of him. These men are glimpses of the right doctors who, I believe, can help and heal me. I am not so naïve to think there is a magic bullet for whatever is the root of my pain, but I do think I can continue to look for ways to manage and maintain, to fight for a means to a better life, and to hope for some kind of answer to come to help better understand what is happening to me and my body. I have to hope that there is an answer out there, waiting to be found, and that when I meet Dr. Right, he will be ready and willing to search with me for the key.