Toni - Plovdiv, Bulgaria

My name is Toni, I am 51 years old, and I live in Bulgaria. I want to share my experience with Tarlov cyst disease, a condition that remains poorly understood, even among medical professionals.

My symptoms began when I was 40. At first, I found it increasingly difficult to sit for prolonged periods. I experienced constant pressure, discomfort, and burning sensations in my sacral area. Lying on my back felt as though someone had placed a shovel full of burning coals beneath my sacrum. This is still the most accurate way I can describe that unbearable sensation.

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For five years, I lived with these symptoms without knowing their cause. In 2020, during the COVID-19 lockdown, prolonged inactivity and sitting at home coincided with a dramatic deterioration in my condition. I experienced a severe flare-up that finally led me to consult a neurologist. He was the first doctor to suspect Tarlov cysts, and an MRI confirmed the diagnosis about a month later. Multiple cysts were found at different levels of my spine.

On October 6, 2020, I underwent surgery for four sacral Tarlov cysts, performed by Dr. Frank Feigenbaum in Cyprus.

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The surgery brought significant improvement, although recovery was difficult. By August 2021, I had recovered enough to discontinue my pain medications completely. For a while, I believed the worst was behind me.

Unfortunately, in 2022, my symptoms returned. Over the six years following surgery, I have experienced four severe flare-ups, each lasting more than six months. These episodes involve deep sacral pain, burning sensations, painful tightness, spasms, and significant physical limitations. Even simple movements or prolonged sitting can become extremely difficult.

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I continue working, but at an enormous physical cost. Working from home helps me remain professionally active, yet it does not eliminate the pain or exhaustion. I depend on various medications, including painkillers, muscle relaxants, anti-inflammatory drugs, and medications acting on the central nervous system, simply to manage everyday life.

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One of the hardest aspects of this disease is its invisibility. We may look perfectly healthy while silently struggling with severe pain and limitations that others cannot see or understand.

Six years later, I can honestly say that surgery helped me, and I do not regret my decision. However, improvement does not always mean complete or permanent relief. Every patient's journey is different, and long-term follow-up and support remain essential.

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What I want people to understand is that patients with Tarlov cyst disease need help at every stage of their journey — from the first unexplained symptoms and the search for a diagnosis to treatment, recovery, and the years that follow. Surgery should never mark the end of medical attention, understanding, or support.

We need greater awareness, more scientific research, better-informed healthcare professionals, appropriate pain management, and continued access to specialized care. Above all, we need doctors who listen, acknowledge our suffering, and take our symptoms seriously.

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I am not sharing my story to seek sympathy or discourage anyone from seeking treatment. I want others facing this condition to know that they are not alone and that their struggles deserve recognition.

Living with Tarlov cyst disease is not defined solely by MRI findings or surgical outcomes, but also by the daily effort required to keep living as fully as possible. Every patient deserves to be heard, understood, supported, and treated with dignity — at every stage of this disease.

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That's why i'm joining the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.