This article was originally published on The Unchargeables.

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The First Signs

I’ve always had an uncanny knack for remembering dates. Don’t ask me why I still remember that my 6th grade orientation was on August 26, 1997. But the date February 25th always makes me think back to 2016. That was the day I spent a solid 8 hours in the emergency room…and a huge diagnosis was missed.

This was back during the time when I was having almost daily migraines for reasons unknown at the time. I joked regularly in my journal that it must be a brain tumor. (Although at times, deep in my mind, my “joking” was actual concern on my part.) I had missed entire weeks of work since the beginning of the year, and this was only the end of February.

January 18, 2016: “I’m incredibly restless. I can’t sit still at all. I feel tremendous anxiety about missing work today. I feel like a horrible person. But I don’t know what else I can do about these headaches! Maybe I have a brain tumor. It would certainly explain a lot.”

Getting Worse

This particular week was my first week back from a two-week continuous leave. I spent those two weeks at various medical appointments. I was diagnosed with status migrainosis. I started five new medications to prevent migraines. And I sat through three days of 4-hour long migraine infusions. So far, I had made it through this week back to work mostly unscathed.

But on Thursday morning, February 25th, I woke up around 10 am (I was working second shift) with the worst migraine I had ever experienced. I got out of bed to see if it would make me feel better, as sometimes I would wake up with headaches that would be helped by a positional change. But I quickly decided I needed to lay back down. When laying down almost made it worse, whereas that usually makes it better, I told my husband we needed to go to the emergency room. This was easily a 9/10 on the pain scale.

Too Bad to Ignore

Trigger warning for next paragraph: emetophobia

So I called off work, we got in the car, and drove the 27 miles to the main campus emergency room where my husband works. The pain was so bad I threw up twice in the car, once while we were just sitting at a stoplight and I thought my head was splitting open. I felt bad for the people in the car next to us.

One perk of having your husband work in an emergency room is that you can go in the employees-only access door, scout out the charge nurse, and therefore skip triage. As compassionate as healthcare professionals can be towards patients, there’s also something to be said for “taking care of our own.” Within a few minutes, I was in a bed in a corner room of one of the less-busy units. My nurse was a friend of ours, a no-nonsense military veteran with a heart of gold. The doctor who saw me knew my history, as he had treated me for a migraine in the ED the first week of January, just after the migraine fiasco had begun.

At the Hospital

He immediately requested a bed placement for me on the neurology floor before even seeing me once my husband met him in the hallway (to keep my room quiet) to tell him what was going on.

After confirming I wasn’t pregnant, I was given prochlorperazine (Compazine) to help with the nausea, since that’s the only antiemetic that works for me. After that, a quick CT scan. Seriously, I spent more time sitting in the hallway waiting for my turn than I spent in the scanner. Since the scan ruled out a head bleed, they were able to give me Toradol. (As an NSAID, Toradol can make bleeds worse.)

Before long, the neurology team came and saw me. They gave me two options: I could either be admitted for infusions (which hadn’t worked the week before), or they could do a steroid burst and taper. I chose the latter because I hate being admitted to hospitals. I will do anything to avoid an admission. So I was given an infusion of methylprednisolone (Solu-Medrol) as an initial hit to hopefully knock out whatever might be causing such a severe migraine. Additionally, I was given a prescription for prednisone to taper over the next week.

By the time we were getting ready to leave, my migraine was down to 5/10, which was certainly more manageable. On the way out, we casually mentioned to the attending physician that I had just had an infertility workup and it showed my prolactin was elevated at 98.1, which can indicate a tumor on the pituitary gland. We double checked that the CT scan showed no brain tumor.

At which point, the doctor said, “Anything large would have shown up on the scan. So unless there’s something really tiny on the pituitary, it would have been seen.”

A Diagnosis

Less than a week later, I received a message from my reproductive endocrinologist.

”Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause)…This…likely reflects a small growth in your pituitary gland (your prolactin was elevated.) This is the most common kind of pituitary growth and is usually NOT CANCER…The next step will be a head MRI (I see you had a normal CT)…”

On March 9th, I had an MRI that confirmed the presence of a 6 mm microadenoma (specifically a prolactinoma) on my pituitary gland. A brain tumor! A real brain tumor! Such a tiny thing, causing such huge problems! It explained everything, from the headaches to the infertility. (Too much prolactin suppresses ovulation by affecting the levels of FSH and LH, which control ovulation. In essence, I wasn’t ovulating because of the tumor.)

The Next Steps

My treatment was rocky. There were two medications available to shrink the tumor, but I reacted badly to both of them. Although I was no longer having migraines, the side effects of the medications continued to cause me to miss weeks of work at a time. My quality of life was essentially as bad as it had been before the diagnosis.

After it was determined that I “failed” both medications, I was finally allowed to see a neurosurgeon in July. While surgery is not routinely performed on my type of brain tumor, the neurosurgeon recognized that the life I was being forced to live was not one that anyone should have to live. We discussed the further options being surgery or radiation, with a slightly better cure rate with surgery (70%) than with radiation (50-60%). My husband and I didn’t even have to discuss it. We just looked at each other, the silent communication passing between us. I turned back to the surgeon and said, “We’ll proceed with the surgery.”

On September 8, 2016, my itty bitty brain tumor, which I had nicknamed “Mini,” was removed in a four-hour surgery. I only spent 48 hours in the hospital and then continued a very long recovery at home. A year and a half later, there are still no signs of recurrence.

The Takeaway

Am I upset that the emergency room missed the tumor? No. As the attending physician said, the tumor would have had to have been “really tiny” to be missed. And you know what? It was really tiny.

We may get frustrated when physicians miss a diagnosis that another physician easily recognizes. But we also need to understand that sometimes, a big problem may be caused by something really tiny. And that really tiny things, even a brain tumor, can be difficult to see.

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