Raising awareness after narrowly avoiding spinal CSF leak s̶u̶r̶g̶e̶r̶y̶

The Arithmetic

Imagine needing to count the minutes upright for your most basic life functions: to eat, pour water, shower, or even poop. The longer you stay up, the louder the ticking gets.

The whole first week I only had about thirty minutes a day, sometimes an hour if I was lucky, before the pain became crippling. No easy cure — just the curse of needing to lie down for hours on end to “recharge.”

Lying flat lets the fluid redistribute around your brain. But standing runs down the clock. Walking ticks it. Showering ticks it. Pouring water ticks it. And when that clock runs out, my head is what goes off.

The cruel part is that after lying down for too many hours, your back and neck start to ache and you try to cycle between positions like you are picking the weakest poison each hour.

A Chelsea studio in the liveliest city in the world, but my entire territory was a mattress.

The Invisible

A strange thing about this illness is its invisibility.

You can look normal for a duration. You can stand, talk, smile, maybe even go to a bar or party. But the whole time you are not normal. There is a countdown running that no one else can see. And because it is so uncommon, it’s hard to explain to others and you wonder if they think it sounds made up.

It gets tedious explaining the whole thing over and over again and hearing the same follow-up questions. “You’re upright! When are you working again?” “Why is it taking so long to get care?” “Are you at least being productive with all that time lying down?”

Lying down is not free time. Productivity is the last thing on your mind when your body is malfunctioning, your head hurts, your brain fog is real, and you are anxious that pushing too hard might send you back to the first-week hell.

And these now-visible sacrifices to my identity also extended beyond health and freedom.

Professionally, I can’t work right now. In one fell swoop, this lifelong high-functioning grinder has had to halt and accept jarring new identity labels: unemployed and medically disabled… at least for now.

Personally, I have always thought of myself as very reliable. But now I’ve had to miss a best friend’s graduation. And I can’t entirely promise I can make another best friend’s upcoming wedding even though I’m given the great honor of officiating it.

As the weeks turn to months, it feels like life for everyone else is moving on, while I’m just stuck horizontal.

The Community Getting Me Through

While naturally a very isolating experience, I want to recognize the good community that has helped me get through.

Family came by. A fond memory is laying on my back right next to my 4-month-old niece, laughing at how both of us are essentially equally immobile.

Friends came by. Some brought homemade chicken soup, others bone broth and electrolytes. Many called me while I wore my crazy prism glasses. Some stayed a while and managed to make me laugh hard enough that, for a moment, I could forget all this madness.

Unexpectedly, the CSF Leak Facebook Group was also a fantastic yet dangerous haven. It felt so good to connect with fellow “leakers” who know the exact weirdness of this illness. It was super helpful to navigate the exact symptoms, hospitals, procedures, research, and consequences.

But it also felt dangerous because you also see how bad it can get. People who have suffered for years with worse symptoms than mine, or whose procedures and surgeries went wrong and lost careers, relationships, and hope. Members the community has lost…

My heart is out to all the CSF comrades still suffering. It has given me more empathy than ever for people living with all types of illnesses.

Valuable Lesson 1: Sticking to My Guns

Recall the first scans did not give me the answer. Brain CT: normal. Brain MRI: normal.

The Mt. Sinai Emergency Room doctors disappointingly explained, “We did not find anything wrong. This likely was NOT a CSF leak because there were no fluids from the nose or ear. It’s more likely a migraine that just needs meds and rest.”

How could I go up against an “expert” when I had never even heard of the term “CSF leak” before April?

The biggest lesson became self-advocacy and trusting yourself. Come opinionated by reasoning from first principles. Don’t be afraid to evaluate second opinions and most importantly, never give up.

Even brain MRIs miss these leaks 20% of the time. And one entire leak type wasn’t discovered until 2013 (by CSF Godfather Dr. Wouter Schievink) — meaning every person who had it before then was told, by good doctors with clean scans, that nothing was wrong.

“We did not find anything” and “it is not there” are different sentences. It can be wrong scans, timing, or a condition medicine is still learning how to detect.

If you dodged Mt. Sinai’s 5-month waitlist for a neurologist, and scoured NYC for the first available neurologist only for them to tell you, “I’ve never come across anyone with such a thing in my 30+ years of practice,” keep calling more systems advocating for yourself to get the right scans!

There is always a trade-off of expertise (how likely they are to get it right) and availability (how much money and time it costs).

Eventually I was admitted to Cornell’s leak program, which ordered the right leak-protocol Spinal MRI scan that found irrefutable proof. That glorious feeling of vindication only came from asserting what I needed and sticking to my guns against even experts and scans that turned out to be false negatives.

I was right to keep pushing. But none of this means the doctors failed me; an ER doctor’s job is ruling out catastrophe, not knowing every 5-in-100,000 disease.

This illness taught me that respecting expertise does not mean surrendering ownership. I repeat this mostly for myself: you have to self-advocate and trust yourself in this world.

Valuable Lesson 2: There Are No Risk-Free Options

About 2 months out now, I am feeling a lot better.

With My Community’s help, many hospital trips and scans, and two epidural blood patch injections, my uptime has grown from thirty minutes to several hours.

Furthermore, my specific Type 1A Dural Tear Leak usually has a good prognosis once diagnosed properly. But I am not fully healed. Unfortunately the only permanent solution most likely requires serious spinal surgery.

I have the surgery scheduled for late July. According to others in the Facebook group that had it before, the road to recovery looks rough.

The feared worst-case scenario, because the surgeon will be operating around my spinal cord at T1, is quadriplegia. That is not the expected outcome, but it is the kind of risk that makes this impossible to treat casually.

This is where the risk lesson becomes real.

There is no risk-free option. Waiting has risk. Patching has risk. Surgery has risk. Not doing surgery has risk. Avoiding a decision is itself a decision.

I used to think that if I researched hard enough, there would eventually be a clean answer.

Now I think life often just gives you trade-offs and asks what kind of risk you can live with. And then you have to take the leap of faith, and live with it.

I wanted to write this now because I am afraid that if I get better, I will forget.

Not the facts. I have enough appointments, reports, and research notes to reconstruct a small museum. More so, I’m capturing this vulnerable state of being that led to great learnings and such new depths.

How a Chelsea studio in the liveliest city in the world can become a lonely jail cell because you’re imprisoned in a body that isn’t working.

How I could never have predicted how precious a normal walk could feel, where a few blocks to Little Island in the morning spring sun without immediate ticking pain led to the widest smile.

To not lose these hard-earned lessons of self-advocacy and decision-making.

How technology, medicine, policy, insurance, waitlists and luck affected my care, and what gaps there are that can shape if someone gets helped quickly or suffers for months or years.

To be thinking a lot about, “A healthy man wants a thousand things, a sick man only wants one,” despite it being such an old proverb.

What this closest brush with death yet means for my mortality and the human condition in general.

Still I haven’t come out the other end of the tunnel yet. I’m purposely choosing to capture all this when it’s not certain to be a feel-good story in the rearview mirror.

If I never forget, does this mean I should never take a simple walk for granted again? Or is completely moving on a sign of true recovery?

I do not have the answers. These are some dimensions to life I’ve never experienced before or expected to learn so young.

But here I am.