Misdiagnosed and Dismissed: How One Australian Woman Discovered Her Tarlov Cyst Was the Cause of Her Symptoms

Jun 16
3 min read

By Leanne Marks, Victoria, AustraliaPublished by the Tarlov Cyst Society

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A Sudden Onset of Mysterious Symptoms

At 45, I began experiencing a range of unsettling symptoms:

Blurred vision
Leg weakness
Loss of bowel and bladder control

Naturally, I sought medical advice. The initial round of blood tests showed only an elevated ANA. I was referred to a neurologist, who brushed off my symptoms as “probably just menopause.” A non-contrast MRI was ordered—but crucially, it didn’t include images of the sacral spine, where many Tarlov Cysts are found.

The results? A few minor findings, but “nothing to explain” my symptoms. The neurologist concluded I was suffering from “PTSD from your divorce” and advised me to “get over it.”

Dismissed Again—and Prescribed Antidepressants

I left that appointment confused, humiliated, and still in pain. My GP referred me to a second neurologist, but again, I was dismissed. This time with a prescription for antidepressants. It’s important to note: I’ve never had mental health issues. My ex-husband accompanied me to every appointment. But no one was listening.

An Emergency That Changed Everything

A few months later, I woke up unable to move my legs. An ambulance rushed me to emergency, where—finally—a sacral MRI was done. That scan revealed a Tarlov Cyst at S2 and significant swelling.

Still, the doctors claimed: “You must have had a fall. The swelling will settle. Tarlov Cysts don’t cause problems.”

I was given anti-inflammatories and painkillers and discharged after two days.

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Physio Brought the Breakthrough

While continuing to search for answers, I was also diagnosed with erythromelalgia—a painful condition causing red, hot, swollen extremities. A dermatologist suspected small fiber neuropathy (SFN) might be involved, but said it wasn’t her specialty.

It wasn’t until I discussed my experience with my physiotherapist, a spinal specialist, that something finally clicked. He reviewed my MRI images and said:

“This Tarlov Cyst is likely causing your problems. Stop all spinal manipulations, use a coccyx cushion, and rest.”

I followed his advice.

Within two weeks, almost all of my symptoms—except the erythromelalgia—dramatically improved.

Life Now, and Lessons Learned

I’m now 61 years old. My symptoms return occasionally, usually when I catch a virus or overdo it. But I know the signs now. I treat flare-ups with rest and lysine, and avoid spinal manipulation completely.

I have no plans to undergo surgery. I believe the damage was done long ago, and my focus now is on managing symptoms, not chasing cures.

Why Tarlov Cyst Symptoms Are So Often Missed

Leanne’s story is sadly not unique. Tarlov Cysts are often misdiagnosed, ignored, or dismissed—especially when they aren’t visible on standard imaging or are misunderstood by doctors. Many neurologists and general practitioners still believe these cysts are incidental, despite research confirming they can cause significant pain and neurological symptoms when symptomatic.

In Leanne’s case, the absence of sacral imaging early on delayed her diagnosis. It took over 15 years and a physiotherapist—not a doctor—to make the connection.

How the Tarlov Cyst Society Is Helping

At the Tarlov Cyst Society, we are working urgently to change stories like Leanne’s by providing access to the tools and knowledge that both patients and medical professionals need.

We’ve created a dedicated Tarlov Cyst Society website—a central hub where individuals can access the latest peer-reviewed research, diagnostic protocols, treatment options, and daily living strategies. Whether you’re a patient seeking answers or a healthcare provider looking to better understand this condition, our site was built to support informed, collaborative care.

We’ve also developed a Diagnostic Poster that simplifies key information from the 1000-Patient Referral Study to help doctors recognize symptomatic Tarlov Cysts and follow a structured diagnostic approach.

Additionally, we’re actively fundraising to build and distribute Medical Education Kits that patients can take to their medical appointments. These kits include:

Evidence-based research
Step-by-step diagnostic tools
Detailed treatment options
Patient care and quality-of-life recommendations

All of our resources are designed to bridge the gap between medical knowledge and lived experience—and to help patients make informed decisions about their own care and daily life.

💡 Take Action

✅ If you or someone you know is living with unexplained spinal or neurological symptoms, request a sacral MRI.✅ Share this story to raise awareness of Tarlov Cyst Disease.✅ Donate or get involved to help us build tools that inform and empower:👉