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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 the day a huge diagnosis was missed.
At that time in 2016, I was having migraines almost daily and no one knew why. I would joke regularly in my journal that it must be a brain tumor. (Although, deep in my mind, “joking” was actual concern on my part at times.) I had already missed entire weeks of work since the beginning of the year, and this was only the end of February.
On January 18, 2016 I wrote, “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.”.
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 finally diagnosed with Status Migrainosus and was started on five new medications to prevent migraines. I also sat through three days of 4-hour long ‘migraine’ infusions while I was off. So far though, I had made it through this first week back at work mostly unscathed.
But on Thursday morning, February 25th, 2016, I woke up around 10 am with the worst migraine I had ever experienced. I got out of bed to see if it would make me feel better. Sometimes, I would wake up with headaches that were helped by a positional change. However this wasn’t the case and I quickly decided I needed to lay back down. Then, when laying down seemed to make 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)
I called off work, we got into the car, and we drove the 27 miles to the main campus emergency room where my husband works. The pain was so bad I thought my head was going to split open. I threw up twice in the car, once while waiting at a stoplight. 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 skip waiting through 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 bed in a corner room of a quieter unit. 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 and had treated me for a migraine in the ED before. It was during the first week of January, just after the migraine fiasco had begun.
At The Hospital
Due to this, he immediately requested a placement for me on the Neurology floor before even seeing me. My husband met him in the hallway to tell him what was going on. After confirming I wasn’t pregnant, I was given medicine to help with the nausea. After that, a CT scan to rule out bleeding in the brain. Since I wasn’t, they were able to give me Toradol for my pain. (As an NSAID, Toradol can make bleeds worse.)
Before long, the neurology team came and saw me. They gave me two options: 1) I could be admitted for infusions or 2) I could do a steroid burst and taper. I chose the latter because I will do anything to avoid a hospital admission and the infusions hadn’t worked the week before. So I was given a steroid burst in the form of an infusion of methylprednisolone 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 considerably 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. 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.”.
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. I had a brain tumor! A real brain tumor! Such a tiny thing yet it was 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 options left, surgery or radiation, with surgery having a slightly better cure rate (70%) than radiation (50-60%). My husband and I didn’t even have to discuss it. We just looked at each other, a silent communication passing between us. I turned back to the surgeon and said, “We’ll proceed with the surgery.”.
A Final Solution
On September 8, 2016, my itty bitty brain tumor, which I had nicknamed “Mini,” was removed during a four hour surgery. I 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.
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 it was really tiny.
While we may get frustrated when physicians miss a diagnosis, especially when others seem to diagnose it easily, we need to understand that sometimes, a big problem can be caused by something really tiny. And that really tiny things, even brain tumors, can be difficult to see.
Laura Tietz is a pediatric pharmacist. She has multiple chronic illnesses, but she enjoys spreading awareness about them through her blog, ribbonrx.com. Reading, writing and sharing life with her husband and seven cats are her greatest joys in life.