Rare Doesn’t Mean Impossible:
A Journey Towards The Initiative

Brianna Hieber - Ohio, US

I don’t usually share things this personal, but the systemic lack of education and awareness surrounding spinal meningeal disorders makes it too important not to.

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I was born with a spinal cord abnormality, an intrasacral meningocele, that caused a cyst to develop in my sacral bone. For the first 17 years of my life, I had no idea it was even there.

About five years ago, I ended up in the ER with severe pelvic and lower abdominal pain. A CT scan revealed a 5 by 2.5 cm sacral cyst, but a neurosurgeon immediately dismissed it as an "incidental, non-symptomatic Tarlov cyst" and told me not to worry. No further imaging was ordered to check for bone erosion or nerve compression. Because the cyst was ruled out, doctors assumed my pain was endometriosis. After hormone therapy failed, my OBGYN performed an exploratory laparoscopy. They found zero endometriosis, but my stomach was accidentally punctured during the procedure, leaving me hospitalized for two days after what was supposed to be an outpatient surgery. For years after, I suffered severe pain and repeated ER visits, only to have doctors continually blame "endo" despite a completely clear surgical report.

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Over the past year, things took a terrifying turn. I developed severe hip and back pain, sciatica, pelvic and leg numbness, leg weakness, POTS, and non-epileptic seizures. I went from working out five days a week to barely being able to walk across a parking lot. My doctors felt my autonomic nervous system was completely overwhelmed by unmanaged pain, and I became fully disabled without clear answers.

In February of this year, the pain overload triggered something completely terrifying. I was spending time with friends and started laughing at something funny, except I couldn't stop. I laughed continuously for 30 minutes until my jaw physically ached. Over the next few days, it escalated into episodes where my eyes rolled back and I lost the ability to speak. Eventually, it was happening so frequently that my friends called an ambulance. I was admitted to the hospital, and over the course of three days, I experienced an estimated 300+ seizures.

During one specific moment in the hospital, I couldn't speak for a prolonged period, and a Code Blue was called because doctors thought I was having a stroke. I will never forget seeing people rush into my room or watching my mom cry at my bedside. All I wanted in that moment was to tell her I was okay. When I have these seizures, it feels like I am stuck inside my body with no way to escape. My mind is completely there, but my nervous system has locked me in.

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After an EEG, I was diagnosed with Functional Neurological Disorder (FND) and Psychogenic Non-Epileptic Seizures (PNES). My body was literally dissociating from the sheer intensity of the chronic pain. I felt like a zombie, trapped in a constant severe headache, light and sound sensitivity, and unable to think. Even as I adjusted to this new reality, I continued having weekly seizures, experiencing them in public and in front of coworkers. It is not an easy subject to talk about, but people desperately need to understand what unmanaged pain can do to the human body.

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About five months ago, I had a pelvic MRI. When my doctor gave me the results, the cyst wasn't even mentioned. But after years of medical gaslighting, I had learned to read my own full reports. Down at the very bottom, it listed the cyst with explicit bone remodeling. I asked a spine specialist for a Sacral MRI, but she flatly denied my request, calling it "unnecessary."

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When a Lumbar MRI cut off the bottom of the cyst, the radiologist estimated it at over 7 cm long, a 2 cm increase, noting explicit bone remodeling and displacement of my left S2 nerve root. At my follow-up, the specialist insisted my scans "looked good," missed the growth until I corrected her on the report, and then claimed a cyst growing in length wouldn't cause symptoms anyway. She told me she thought I had MS instead. For the second time in a month, if I hadn't read my own report, I would have had no idea what was actually going on.

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With the help of my stepfather, a retired physician, I booked a consultation with Dr. Frank Feigenbaum, a neurosurgeon specializing in symptomatic spinal meningeal cysts. Meeting him was the first time in five years I had real answers. He reviewed my scans and explained that every previous report was wrong: it wasn't a Tarlov cyst, but an intrasacral meningocele with severe, undeniable compression of all my sacral nerves.

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Within weeks, my legs began deteriorating so rapidly that Dr. Feigenbaum scheduled me for emergency surgery to prevent permanent loss of function. On October 5th, I underwent surgery. During the procedure, he found that the untreated mass had eroded almost all of my sacral bone, requiring a mesh plate for support and leaving me with permanent physical restrictions to protect my sacrum. He also discovered an ectatic dural sac placing severe pressure on my sacral anatomy, as well as severe nerve damage. Because of my age and catching it when we did, my nerves have a chance to recover.

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Surgery was 100% worth it, and I am already noticing significant improvements, including a noticeable decrease in my seizure frequency. But if I hadn't learned to read my own reports and fight for answers, I likely would be facing permanent paralysis today due to nerve death.

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My cyst may have been rare, but my story of medical gaslighting, misread imaging, and systemic dismissal isn't. Nobody should have to become their own doctor just to get proper care. That is why I created The Tarlov Initiative: to push for clinical recognition, better education for doctors and patients, accurate scan reviews, and research, so no one has to endure years of suffering without answers.

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That's why we're launching the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.