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How a Leak in My Spinal Cord Convinced Me It Was 2007

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“Who is the president?” the woman in the emergency room triage asked me.

Well, Donald Trump is indelible, so I’m able to get that one right.

“What year is it?” she followed up.

That’s where I’m stuck. “2006?” No, that’s wrong. “2007?”

I was way off. And I knew it, too. My memory couldn’t piece together the four simple digits that’d help confirm I’m living in reality.

“That’s OK,” the woman assured. “A lot of people get that one wrong.”

I didn’t believe her. “That’s very kind, but I think I should know what year it is.”

I should have been hiding dyed eggs for my grandsons or baking a honey ham. Instead, I spent Easter 2019 in the E.R., my husband, Bob, at my side.

What the heck was wrong with me?

In short, brain sag. Yes, brain sag. (Does it have to be called that?)

Well, technically, it’s Spontaneous Intracranial Hypotension, as my neurologist daughter Melanie had noted to me upon diagnosis. But those 13 syllables don’t exactly roll off the tongue. My brain was no longer floating nicely in a central position within my skull, but sagging lower, lacking enough fluid to suspend healthily within my head.

My awful Easter did not come out of the blue, to be fair. I’d been grappling with a long list of life-altering symptoms for weeks.

Intense headaches whenever I’d change positions. Debilitating fatigue. My vision had grown blurry, along with my memory. I’d felt woozy and off-balance. I’d developed incontinence, difficulty swallowing, and — as evidenced by the drool sometimes left on my shirt collars — slack-jaw. I was a zombie, more or less.

I couldn’t ride my bike, play with my grandsons, or go on hikes. I tried my best to retain a sense of normalcy by singing in the classic rock band Bob and I joined for fun but spent set breaks completely exhausted, lying down out of sight behind the drums. I don’t remember the birth of my third grandson, although bittersweet photos of me holding him confirm I was, in fact, there.

I’d become apathetic about everything, too, which is one of the more unsettling aspects of living with a sagging brain. No opinions, no clear-headed takes on current events. You know how I know things got bad? Bob used my nice kitchen broom to clean up our grimy garage — and I didn’t even care!

So, brain sag.

That explains drooling, forgetful, don’t-care-about-my-nice-broom Zombie Katy. Your next question might be, what created her? Why was my spinal fluid depleting, and where was it going, exactly?

“You must have a CSF leak,” Melanie had said.

“A what?”

“A Cerebrospinal Fluid Leak.”

Did I mention I’m incredibly fortunate to have a neurologist for a daughter?

As Melanie explained, I likely had a hole or tear in the dura — the outer layer of my spinal cord — where fluid was able to leak out, leaving my brain in its sorrowful state.

A CSF leak can be caused by a number of things, including direct harm inflicted on the dura. This was the case for George Clooney, whose injury on the film set of 2005’s “Syriana” left him with CSF leak symptoms so excruciating he began having suicidal thoughts.

If you’ve never heard of brain sag or CSF leaks, you’re not alone. That’s why I decided to write this post; lots of people do not know what it is. Heck, many physicians aren’t up to speed on the condition either!

With CSF leaks being relatively rare and sometimes difficult to detect, it’s no wonder they’re often misdiagnosed. The symptoms could indicate a number of more common ailments, leading doctors down dead-end roads. Most patients, like myself, spend many anxious hours in gray hospital rooms looking for answers before they get on the track to treatment.

Sometimes a blood patch works. It’s a procedure that uses your own blood to heal (or “patch” up) the leak. Although I found temporary relief through multiple attempts, the patches ultimately failed, in part because the exact location of my leak was difficult to spot. We went the oral steroids route, too, which helped curb the worst parts of my brain sag symptoms. But steroids are no permanent fix, and their tendency to increase appetite wasn’t good for our grocery bill — or my waistline. Let’s just say 3 a.m. PB and Js became embarrassingly common.

Dr. Linda Gray at Duke University refused to quit on me, though. She specializes in CSF leaks — and boy, did it make a world of difference.

Duke is one of the very few medical centers in the U.S. that has the expertise and diagnostic tools on hand to treat hard-to-find CSF leaks. There, I eventually discovered my specific type was due to two fistulas that had broken my dura — an even less common form of leak that explains why the blood patches failed. After two surgeries by the incredible Dr. Isaac Karikari, I made a full recovery.

I get the bike rides back and the grandson playtime. I get to hike again, sing in our band — and, yes, scold Bob for using the nice kitchen broom in our garage.

When friends saw me after the procedure, they could tell I was me again.

“It’s your eyes!” most would say.

I know how lucky I am. Lucky to have Bob, who guided us through one of the worst years of our lives. Lucky to have Melanie, whose expertise filled in the gaps when our bureaucratic health system left us helplessly frustrated. Lucky to have met the brilliant minds at Duke.

For many with CSF leaks — diagnosed or not — that luck hasn’t arrived yet. They’re still waiting anxiously in those gray hospital rooms, looking for answers and relief.

If that’s you, know you’re not alone. There are experts and resources out there to help you navigate this unblazed trail. The journey is hard and rarely short, but I promise it’s worth the fight.

Photo via contributor.

Originally published: May 13, 2020
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