A Letter to My Neurosurgeon

A Letter to My Neurosurgeon

Dear Dr. Recinos,

We just met two months ago. In fact, if you passed me in the hallway, you probably wouldn’t even remember my name. But I just want to tell you that you pretty much saved my life. And you haven’t even laid a hand on me yet.

When I started having severe migraines at the start of this year, I thought it had to be related to stress. I was going through the horrible emotions resulting from infertility and the major depressive disorder that came along with it. At times, I was passively suicidal. But deep inside, I knew something else had to be wrong. Headaches of that severity don’t just come out of the blue like that and last for months without something literally going on inside the head. I joked in my journal multiple times that I must have a brain tumor. Imagine my relief when a visit to the emergency room revealed a normal CT scan.

But wait! One astute reproductive endocrinologist and an MRI later revealed the truth- a 6 mm microadenoma in my pituitary gland, this one a prolactinoma to be exact. Thankfully, as you know, prolactinomas almost never require surgery, since there are two oral medications that can shrink them! So I went on my merry way, knowing I would take my medication like a good patient and wait to feel better.

Then, 2 hours after my first dose of cabergoline, WHAM! Let the side effects begin! Soon I was experiencing them all: nausea, lightheadedness, dizziness, hot flashes, night sweats. To heck with this. Let’s try the bromocriptine instead! Annnndddd a big fat nooooooooo on tolerating those side effects either.

While waiting for the days to pass until my appointment with my new endocrinologist (I could hardly expect my reproductive endocrinologist to follow me for this chronic condition) I stumbled across the pituitary tumor page on the hospital’s website. What was this? Beginning to think I might be getting close to needing surgery at this point, as the medications were quickly becoming intolerable, I eagerly awaited Monday morning and called first thing to get an appointment. I was told my case had to be reviewed. Why? I just wanted to talk to the surgeon to see if I was a candidate. So I waited. And waited.

April 27: “I don’t want to live like this. I would rather be dead than live like this. Truly I would. I can’t manage being in this much pain all the time. It makes me want to die. And if I can’t have surgery…I don’t know what will become of me, I really don’t. I don’t want to spend the rest of my life suffering. I really, truly just want to die. Why can’t I just be granted that…I can’t stand being in pain every single second of my life.”

I finally called after the allotted 48 hours the office told me it might take for my records to be reviewed…only to be told no. Why? “Because it’s only a prolactinoma” said the lady on the phone. I can still hear her sneering the words as if I had called and asked if the neurosurgeon could cure my cold. I understood I needed to truly fail the bromocriptine per my endocrinologist first, but I was still feeling despair by this point because that appointment was still almost a month away.

“I’m just so disappointed. And upset. I really thought this was going to be the answer. I really did. Guess that just goes to show you what a stupid, idiotic moron I am. Why would anyone want to help me anyway? It’s ‘just a prolactinoma.’ Yeah, and it’s ruining my life.”

So I just accepted I was going to have to suffer. My new endocrinologist decided my prolactin level wasn’t low enough, so she doubled my dose of bromocriptine, which brought life into a new circle of hell I hadn’t experienced before. Having to go on short term disability from work because of the side effects? Not ideal.

June 28: “I heard back from Dr. [Endocrinologist]. She said to stop the bromocriptine if I’m becoming syncopal. She suggested making an appointment with Dr. Recinos in neurosurgery. So I just called and of course they have to review my case again. I have this feeling that they’re going to turn me down again because my prolactin is almost normal. In which case, I’m screwed. I’m going to need to wait for the tumor to grow back and those horrible headaches and migraines to come back. I don’t know if I’m strong enough to deal with all of that again.”

But you surprised me. The very next morning your office called me and wanted to go ahead and set up an appointment for me. And, unlike every other appointment I’ve ever had in this healthcare system, I only had to wait a week and a half. Kudos for that.

Then the big day came. We went through how I had received the diagnosis, reviewed my MRI, and went over how I had (not) tolerated the medications and what horrible side effects I had experienced. You then explained there were two options remaining: Surgery, with about a 70% cure rate (better if the tumor is smaller, so at least I have that going for me), or radiation, with about a 50-60% cure rate. Based on my history and where I stood in my disease process now, you recommended proceeding with surgery. And we agreed.

So how does that make me feel?

July 8: “And now there’s the brain surgery, which could potentially fix everything else. The headaches and the infertility. I really could be fixed when I go back to work in October. And I really could have a baby next year. It’s all within reach now! And the fact that this one surgery could do all that is inspiring to think about. And to think that this was the Lord’s plan the whole time. From the very first headache on January 2nd, this was His plan.”

But then, at the end of August, my world was rocked yet again when my pre-op imaging scans revealed a 4 mm aneurysm on the supraclinoid internal carotid artery. I waited in a panic for a few days as my head was rescanned to determine how bad it really was and to see if we could even proceed with my surgery. I was so convinced it was going to be cancelled. I cried and cried for three days, thinking any hope I had of being able to live a normal life again was gone. But you consulted with a trusted neurovascular surgeon and together you decided it was safe to proceed. I’ve never felt such relief in my entire life as when I heard that good news. And I trust your decision.

And so, Dr. Recinos, I want to say thank you. You haven’t taken out the tumor yet, but you already gave me my life back. Because you’ve given something I haven’t had in a very long time: hope.

See you in the OR in a few hours.

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0 thoughts on “A Letter to My Neurosurgeon

  1. Our stories are so similar. This made me cry! God bless you, and I’m SO happy that you’re getting the surgery that you so desperately need! I’ll be praying for you all day tomorrow. You have a friend in this. Love, Chelsea (also with “just a prolactinoma”).

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