Trust Yourself: My Spinal CSF Leak Journey
On January 1st, 2025, I woke up full of New Year’s good intentions—restart the job search after a recent redundancy, continue my fitness journey, and maybe even tackle a full spring clean. But instead of renewed energy, I had a pounding headache and nausea that didn’t make sense. I’d barely touched a drink the night before…..then I started vomiting.
Perhaps this was a migraine—my first at 52? Hormones? Or that Christmas cheese board? Whatever it was, I tried to sleep it off. But by the fourth day, I couldn’t deny it any longer. I attempted to walk the dog and nearly collapsed. After consulting Dr Google and realising this wasn’t a typical migraine, I made my way to the emergency room.
Eight miserable hours later, I was given aspirin and told I’d be fine.
But I wasn’t.
My GP arranged an MRI, and when the results came in, she called me, deeply concerned. There was a bleed on my brain, she said. If I didn’t return to the emergency room, I needed to see a neurosurgeon immediately. That afternoon, I met the specialist she referred me to—who waved it off as a blip. “Nothing to worry about”, he said. “Just a bit of fluid, not a bleed. It would resolve itself.”
Like most do, I trusted the neurosurgeon’s opinion. I had to convince myself I was improving. I even went to job interviews, repeating the phrase “better every day” like a mantra, even though a quiet doubt gnawed at me.
A second MRI showed worsening symptoms—larger fluid collections, my brain sagging deeper into my spinal column. Again, the neurosurgeon dismissed it. “One more MRI in a month”, he said.
That month felt like a lifetime. I didn’t know if I could travel, if it was safe to exercise, or what was truly going on. I had a hospital bag packed just in case; I felt like any moment things could get dramatically worse.
When my third MRI showed further decline, and with a nudge from concerned friends and family, I sought a second opinion. My GP and I found a world-renowned specialist in spinal fluid leaks in Sydney. He took one look at my scan and confirmed what I had only just begun to suspect: this was a cerebrospinal fluid (CSF) leak.
It was both a relief and a new terror. Online support groups had warned me how hard this could be to treat. But at least now I had a name for what was happening. A spinal MRI showed a suspicious area of CSF outside of the dura.
Surgery would be needed. But first, a myelogram was required to pinpoint the exact site. The wait for that procedure was agonising. I tried to keep busy with charity work, hiding my worsening condition behind cheerful emails and calls—all while lying flat in bed – the only position that offered any relief. I felt more and more isolated but somehow unable to reach out. Only a few people knew how much it was affecting me.
Eventually, my symptoms became unbearable. I was vomiting again, unable to sit upright, barely coherent. My husband had to advocate for me when I couldn’t. A CT scan revealed a massive brain hemorrhage.
“I need to go home and pack, then I’ll go to the hospital,” I told the ER doctor.
“No,” she replied. “You’re going by ambulance.”
Suddenly, I was in ICU, surrounded by machines, facing a craniotomy—brain surgery. Over the next 8 days, in the fog that followed, the long-awaited myelogram finally happened. The CT myelogram showed an anterior tear caused by a bone spur, likely from a herniated disc years earlier—possibly aggravated by the yoga I’d thrown myself into after losing my job.
After what felt like an eternity, I was well enough to undergo the spinal leak repair.
I’ll never forget the moment I awoke from that surgery. I didn’t expect to feel better right away—but I did feel clear. It was as if someone had lifted a thick fog from my mind. I hadn’t realised how cognitively impaired I’d become until my brain returned to where it belonged.
The recovery wasn’t easy. I reacted badly to fentanyl, had rebound high-pressure headaches and eye pain, and couldn’t keep food down. But I was improving.
My neurosurgeon looked at me steadily and told me, “You are fixed.” And I believed him.
Seeing the video of the surgery reassured me—there was no way that tear was reopening. I was fragile, still fatigued, and overly cautious. Even a cough terrified me. But day by day, I gained strength.
Amazingly, a company I’d interviewed with earlier offered me a short-term contract while I was recovering. I hesitated, unsure if I could manage, but ultimately accepted. The team was incredibly supportive. They waited until I was cleared to work, adjusted my hours, and even paid for Ubers while I wasn’t allowed to drive.
Six months after my first symptoms, I was not only working again—I was symptom-free. Being back at work has helped my recovery by giving me purpose, structure, and the confidence that my cognition is intact.
Looking back, I feel immense gratitude. Many people in the spinal leak community suffer for years before receiving a diagnosis or treatment. I was lucky. But I’m also angry—angry that I was dismissed, gaslit, made to feel like I was imagining things.
I now understand what medical misogyny feels like, and I’m still deciding how best to speak out about it.
For now, I share my story for others who might be wondering if their symptoms are “just in their head.” Trust your instincts. Advocate for yourself. Find a specialist who listens.
This experience has changed me. I know my life is forever different. I’ll always be more cautious with exercise, more mindful about pushing through fatigue, and overall, just a little bit kinder to myself. I’m learning to honour what my body needs, not ignore it. While this was a traumatic chapter, I will reshape it into a story of resilience. I’ve come through something extraordinary, and now I find myself valuing every moment—especially those spent with family and friends—that little bit more.
A poem by Abby
Resonance
The table slides,
cold beneath my spine,
the tunnel swallows me whole—
a throat of metal and silence.
I am told to be still,
as if my body is not already a cage,
as if I have not spent endless days
trapped inside its betrayal.
The hammering begins,
a mechanical hymn,
the rhythm of my own undoing
bouncing off the walls.
I close my eyes,
summon a name
I once knew well—
a god I left in childhood pews,
forgotten in the years of certainty.
If you are listening,
if you are anywhere,
let me walk away whole.
Let me wake up tomorrow
without the weight of waiting.
The machine does not care.
It scans, it hums, it takes.
But I whisper anyway,
because I want my life back.
Because I am still here.
