A year ago today, a tumor was removed from my head.

The four-hour brain surgery itself was uneventful. I woke up pretty crabby afterwards. But when you go into the OR feeling fine and wake up with the world’s worst headache and sore throat and you can’t breathe through your nose or smell anything? Not to mention the constant run of blood and gunk draining out of your nose and down your throat, enough to make you unpleasantly sick. That’s enough to ruin anyone’s day.

But the tumor was gone. I was discharged 48 hours later, having experienced no complications except a migraine a few hours post-op.

The surgery was supposed to make my life better. And for a few weeks, I suppose it did.

My initial recovery went very smoothly. My sense of smell came back within 1-2 weeks. I was able to sleep flat again within a week. My headaches were still present, but mild. It certainly seemed that the decision to have the brain surgery was the right one.

Then it all went wrong. Illness, as it turns out, wasn’t done with me yet.

Reversal of Fortune

October 2, 2016: “Can’t I just feel good for a change? How normal is it to still be feeling so run down and fatigued? I just want to feel normal again. And I’m sure (at least I hope) that will come about someday soon, but that doesn’t mean I can’t wish for it to get here sooner…I really wonder what it will be like to feel good again. To feel normal. But will I ever get there?”

Looking back on those words from my personal journal fills me with disappointment. Because nearly a year later, feeling “good” still hasn’t happened.

October 6, 2016: “But I know something’s not right. Once the initial recovery was over, this all started last week out of nowhere. Something has to be wrong; I know my body well enough to know that. I just hope someone listens to me. Otherwise I don’t know what I’m going to do. I know something is wrong.”

At my follow-up appointment with my neurosurgeon that same day, I was told that if tests on my adrenals came back normal (which they did the following week), then I was fine. So apparently my fatigue didn’t mean anything. It wasn’t caused by the brain surgery. Or so I was told. This was fatigue that had me sleeping 14-20 hours a day. I would get up, do a load of laundry, and need to go straight back to bed. That isn’t normal no matter what you have going on. But I was told to ignore it.

Signs of What Was to Come?

I’m so glad I have these journals. As I’m reading back through them now, I’m putting pieces together that are shocking to me. My next diagnosis was making itself known and nobody saw it.

October 5, 2016: “I looked up symptoms [of low cortisol] and the only thing that fits is the worsening fatigue. Maybe cold intolerance and craving salty foods…Maybe a little dizziness and lightheadedness.”

Uh-oh…

October 11, 2016: “Labs are normal. Now there’s nothing I can do. I just feel like trash and there’s nothing that can help me. But why is the dizziness returning? And what’s causing me to feel like I’m about to pass out sometimes when I’m lying in bed? And why won’t these stupid headaches just go away already? I have zero energy to do anything and I feel like crap all the time. Is this really still part of the healing process? It must be.”

It was there the whole time. I understand that my neurosurgeon and endocrinologist aren’t knowledgeable about every disease state out there. But would anybody look at my descriptions above and say, “Oh yeah, that’s all normal.” Apparently.

And it didn’t take long for things to get worse. Brain surgery was just the beginning.

Mounting Evidence

December 4, 2016: *putting up Christmas greenery* “By the time I finished that, I was sweating and breathing heavy like I had just exercised. All I really did was get on and off a chair a few times. And my pathetic body couldn’t even handle that. It all took about 45 minutes, but I feel like I ran around the block. I’m still sitting here on the couch needing to take deep breaths every few seconds because I still feel out of breath…How am I ever going to be able to do anything again? I think this is the clearest example I’ve seen in my life recently that this fatigue is a pretty huge deal.”

December 14, 2016: “When I was folding the whites earlier, I got through four of David’s undershirts before I had to take a break. I feel like I’m getting worse as time goes on, not better. And it’s extremely frustrating because I don’t know what to do about it. There are only so many labs that can be drawn and tests that can be done, and the conclusion so far has been that nothing is wrong with me. And that makes me feel even worse, because something just doesn’t feel right. I don’t feel like me…I am so done. If I get diagnosed with anything else anytime soon, I think I will lose my mind.”

The Rapid Decline

December 20, 2016: “I’ve been feeling especially fatigued the last few days. I get short of breath just doing the simplest things (like folding a bed sheet) and even just standing up makes me go tachycardic to at least 100, if not higher. It’s really ridiculous and has been getting worse over the past few days.”

December 21, 2016: “So what the hell am I supposed to do now? The only thing that made sense is being anemic and I’m definitely not. So why am I dizzy, short of breath, tachycardic when I go up or down a flight of stairs (or get up, or bend over and then stand up) and near syncopal at times? I’m drinking lots of water. I’m sitting here in tears because now I feel like I have no direction whatsoever. Who’s going to help me now?”

The next day, I was feeling even worse.

December 22, 2016: “Ok, so I just went into the kitchen to get a bowl of cereal. My heart rate shot up to 120. Then a bit after, I went to the bathroom and when I stood up off the toilet, it went up to 136. Something is not right here. When I was counting the 136, my vision blurred for a few seconds.”

Something was indeed not right. My husband convinced me to come to the emergency room where he works. The attending who saw me knows me very well. He didn’t beat around the bush; once my labs all came back normal, he put me on a 48-hour Holter monitor. He said he thought I might be developing some form of orthostatic intolerance.

And that’s exactly what happened. Two weeks later I had a follow-up appointment at the Syncope Clinic at the hospital. Within a few weeks, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).

The Outcome

I had expected normal post-op complications from the brain surgery. I was spared a CSF leak. My neurosurgeon thought I would wind up with diabetes insipidus because he had to manipulate the pituitary gland quite extensively to get the tumor out. But despite my incredible thirst ever since the surgery, I somehow don’t have diabetes insipidus. In fact, the thirst has worked out for my benefit; it’s the easiest thing in the world for me to knock back 5-6 liters of fluid a day to help control my POTS. Thank goodness for small favors?

Needless to say, this mess is not what I expected when I went into the OR a year ago. Not that anyone would have anticipated this. The only consolation I have is that my POTS specialist told me that POTS is more common in those with pituitary disorders than in the general population. Add that to my celiac disease (the third leading autoimmune cause of POTS) he says, and I was a POTSie waiting to happen.

I was truly hopeful that once I recovered from having surgical instruments shoved up my nose and a hole drilled through my skull, I would finally, finally, be normal again. I could return to work full time, which I hadn’t really been able to do since December 2015. I could get pregnant, which I’d been trying to do since 2013. And everything that happened in 2016 would be a distant memory.

Unfortunately, as those of us who have dealt with pituitary tumors know, sometimes we don’t always get our happy ending. It could be a tumor recurrence, dealing with the challenges of hormone replacement, or unforeseen complications. And brain surgery doesn’t always make things better. It just doesn’t seem fair.

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Am I glad I had the surgery? Yes. I knew the risks going into it: that I might not get better or may even get worse, the latter of which ended up being true for me. I am worse than I was a year ago. POTS is a nightmare to treat and get under control. I can never predict one day to the next.

Am I disappointed? Absolutely. I won’t sugarcoat that. Not only with the diagnosis, but that I was told by multiple healthcare providers that my symptoms were normal and fine when they were anything but normal and fine.

But I have no choice but to keep moving forward. And for now, that’s all I can do.

💛ribbonrx