Patient Experience: The Reality of Living With Tarlov Cyst Disease

Becky's Story -

Imagine living in relentless pain, knowing exactly what’s causing it, yet being told time and time again that it’s not real. This is the reality for thousands of Tarlov Cyst Disease patients worldwide—people dismissed, gaslit, and left to navigate a broken medical system that refuses to acknowledge their suffering.

Understanding Tarlov Cysts and Their Symptoms

Tarlov Cysts are fluid-filled sacs located near nerve roots in the spinal column, most commonly found in the sacral region. While many medical professionals classify these cysts as incidental findings, growing research and patient experiences prove otherwise.

Symptomatic Tarlov Cysts can cause severe nerve pain, sciatica, loss of bladder and bowel control, chronic pelvic pain, and debilitating pressure in the sacrum.

One such patient recently shared her Tarlov Cyst journey, and her experience echoes the struggles faced by so many others.

A Patient’s Story: The Harsh Reality of Living with Tarlov Cyst Disease

For the past six to seven years, this patient has endured excruciating sacrum and tailbone pain, making daily activities unbearable. Sitting for extended periods—especially in a car—became impossible. After physical therapy failed, she finally underwent an MRI scan, which revealed multiple Tarlov Cysts in her thoracic and lumbar spine, including a significant one at S2-S3 measuring 1.5 cm.

Despite this, every doctor she consulted—seven in total—dismissed her cysts as incidental. Instead, they attributed her pain to SI joint inflammation, prescribing caudal injections as treatment. Rather than relief, she suffered systemic illness as a reaction to the injections. Yet, instead of reassessing her case, doctors refused to provide further treatment.

As her condition worsened, severe mid-back pain sent her to the emergency room twice. She was admitted overnight and diagnosed with a "strained back," yet she believes this was actually a flare-up of a thoracic Tarlov Cyst.

To complicate matters, she also has a history of stroke and coronary artery dissection, potentially linked to an undiagnosed connective tissue disorder. However, doctors continued to dismiss her concerns instead of offering comprehensive care.

Then, she discovered Dr. Frank Feigenbaum’s YouTube video on Tarlov Cysts, which perfectly explained her symptoms—sacrum pressure, pudendal nerve compression, and chronic saddle pain. For the first time, she felt understood. But her doctors refused to acknowledge the connection, reinforcing the widespread medical gaslighting faced by Tarlov Cyst patients worldwide.

Now, she’s forced to pay out of pocket for an MRI, since insurance refuses to cover it. She fears her sacral cyst has grown, worsening her condition. Surgery with Dr. Feigenbaum remains an option, but Blue Cross Blue Shield labels the procedure as "experimental," leaving her with an overwhelming financial burden.

A year ago, she was forced to retire due to pain, making driving to work impossible. Now, she spends her days lying down, relying on a TENS unit and ice packs just to manage her pain. Sitting comfortably is no longer an option, so she moved a bed into her living room just to get by.

Tarlov Cyst Disease Is Not an Incidental Finding

This story is not unique. It represents the thousands of Tarlov Cyst patients who fight for recognition, proper diagnostics, and access to treatment every day.

According to research, 4.18% of the global population has Tarlov Cysts, yet many are left undiagnosed or untreated.

Patients are told:

• "Your cysts are too small to cause pain."

• "It must be something else—your MRI looks fine."

• "Tarlov Cysts don’t cause symptoms."

However, the reality is that symptomatic Tarlov Cysts can cause severe pain, nerve damage, mobility loss, and neurological dysfunction.

The Financial and Emotional Burden of Tarlov Cyst Disease

Patients seeking Tarlov Cyst treatment face yet another battle—insurance companies refusing to cover surgery. Procedures proven to improve patient outcomes are dismissed as experimental, forcing patients to pay upwards of $40,000 out of pocket for surgery or suffer indefinitely.

Beyond the financial struggle, the mental health toll is immense. Many patients:

• Lose their jobs due to pain-related disability.

• Struggle with isolation as their world shrinks to accommodate pain levels.

• Experience depression and anxiety, as doctors fail to validate their suffering.

How We Can Drive Change for Tarlov Cyst Patients

Doctors must listen.

Radiologists must accurately report Tarlov Cysts in imaging findings instead of dismissing them. Neurosurgeons must acknowledge the mounting research proving these cysts cause pain and complex health problems. And most importantly, insurance providers must stop denying coverage for necessary procedures that could restore patients' quality of life.

Join the Movement for Tarlov Cyst Awareness

If you are living with Tarlov Cyst Disease, know this: your pain is real, your experience matters, and you are not alone.

We must continue advocating for proper diagnosis, insurance coverage, and increased awareness within the medical community.

📢 Want to take action?

• Share your story with us.

• Support the Tarlov Cyst Society through a donation of your skills, experience, time, and funds.

• Help us spread awareness so that no patient has to suffer in silence.

  
  

It’s time for the medical community to stop dismissing Tarlov Cyst Disease patients and start listening.

Your Story Matters send your story to info@tarlovcystsociety.com