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Support For Medical Professionals

Recognizing and Diagnosing Symptomatic Tarlov Cysts: A Guide to Informed Care

In 1938, neurosurgeon Dr. Isadore Tarlov first described fluid-filled sacs arising along the dorsal spinal nerve roots—now known as Tarlov Cysts, or Perineural Cysts. His initial interpretation labeled them as incidental and asymptomatic, a view that shaped decades of medical education, radiologic reporting, and clinical decision-making.

But what many clinicians never hear is this: Dr. Tarlov later revised his position.

In 1953, he published Perineurial Cysts of the Spinal Nerve Roots, documenting symptomatic cases and noting that nerve fibers are often embedded within the cyst walls, making compression clinically significant. He concluded that these cysts can and do cause neurological symptoms.

Unfortunately, this critical update was largely overlooked. The early mischaracterization remained embedded in textbooks and imaging protocols—contributing to widespread dismissal of patients presenting with progressive pain, bladder or bowel dysfunction, radicular symptoms, and neurological decline.

Now, nearly a century later, that narrative is being corrected.

The Tarlov Cyst Society is proud to highlight a major advancement: the development of a standardized diagnostic protocol for symptomatic Tarlov Cysts, led by Dr. Kieran Murphy and his colleagues at Toronto Western Hospital.

This multidisciplinary, evidence-based framework—derived from over 1,000 patient cases—provides clinicians with a structured, repeatable method for evaluating whether a Tarlov cyst is symptomatic.

The Symptomatic Tarlov Cyst Diagnostic Protocol includes four core components:

  • Comprehensive Clinical Evaluation
    Focused neurological and functional assessments based on dermatomes at and below the cyst level, with attention to bladder, bowel, and sexual function.

  • Advanced MRI Imaging
    Use of axial and sagittal sequences to evaluate cyst dimensions, nerve root displacement, and bone erosion—features often missed on standard spinal imaging.

  • Symptom Correlation
    Determining whether symptoms align with the cyst location, while assessing for comorbid or overlapping pathologies.

  • Confirmatory Testing
    Nerve root blocks or cyst aspiration to assess symptom improvement following temporary reduction of CSF pressure within the cyst.

This protocol empowers clinicians to make objective, data-driven diagnostic decisions—removing ambiguity and reducing the risk of misdiagnosis or inappropriate referral.

A Call for Clinical Engagement

This Clinician Hub exists to provide the tools, research, and resources necessary to improve outcomes for patients with symptomatic Tarlov Cysts.

We invite neurologists, neurosurgeons, radiologists, pain specialists, and general practitioners to explore the framework, review the literature, and utilize the information and tools provided on this page.

Clinician Directory:

Connecting with Colleagues Experienced in Tarlov Cyst Treatment

Tarlov Cysts are complex, often misunderstood, and frequently under-recognized in clinical practice. When a patient presents with symptoms suggestive of a symptomatic Tarlov Cyst, it can be challenging to find colleagues with direct experience in evaluating or treating the condition.

 

This section provides a curated list of physicians, specialists, and clinical researchers who have experience in the diagnosis, management, and/or surgical treatment of symptomatic Tarlov Cysts.

Whether you're seeking a second opinion, looking to refer a patient, or hoping to engage with others advancing care in this field, this list is intended to foster clinical collaboration and professional support.

 

These are not endorsements of specific providers or treatment approaches, but rather a resource for medical professionals seeking to learn from, consult with, or refer to others with a working understanding of this rare but impactful condition.

 

We welcome contributions and updates to this list. If you are a healthcare provider with relevant experience and would like to be included, please contact us at info@tarlovcystsociety.com.

Together, we can close the knowledge gap and improve patient outcomes—one connection at a time.

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What to Look For: Common Symptoms of Symptomatic Tarlov Cysts

Pain Patterns

  • Persistent or positional pain at or below the cyst location

  • Pelvic, perineal, or radicular pain

  • Pain worsens with sitting, walking, or standing

Neurological Dysfunction

  • Bladder, bowel, or sexual dysfunction

  • Numbness, weakness, or altered sensation in the cyst’s nerve root distribution

1

Comprehensive Clinical Evaluation

  • Conduct neurological and functional assessments focused on dermatomal distribution below the suspected cyst level
     

  • In non-sacral cases, include the sacrum in imaging to rule out additional lesions

2

Advanced Imaging

  • Order dedicated spinal MRI using axial and sagittal sequences
     

  • Evaluate cyst size, location, nerve root displacement, and bone erosion
     

  • When symptoms suggest multifocal involvement, image the entire spine

3

Symptom Correlation

  • Confirm symptoms align with cyst location
     

  • Investigate for overlapping or concurrent conditions

4

Confirmatory Testing

  • Nerve root block: Targeted diagnostic injections to confirm symptom origin
     

  • Cyst aspiration: Assess symptom relief following temporary CSF drainage


Gender-Specific Considerations

Women are disproportionately affected and often misdiagnosed with gynecological or urological disorders. Validating pain location and matching it to dermatomes can reduce unnecessary referrals and testing.

Clinical Takeaways

Symptomatic Tarlov cysts are often overlooked, yet their impact can be severe. A multidisciplinary approach—including clinical evaluation, MRI review, and diagnostic testing—can help ensure patients receive the validation and care they deserve.

Timely diagnosis improves outcomes. Dismissal delays recovery.

Tarlov Cyst Society Can Support You:

  • View case studies and patient education tools

  • Refer patients to our peer support programs

  • Collaborate with our international registry or advisory network

Contact us for clinical resources or referral suggestions. Send us an email or fill out the form. 
info@tarlovcystsociety.com

Contact us

Watch: Lectures & Case Studies on Tarlov Cyst Disease

Explore expert-led presentations on diagnosis, symptoms, and treatment of symptomatic Tarlov cysts.

Tarlov Cyst Disease - Kieran Murphy April 2024

Tarlov Cysts -
Amy's Story

Tarlov Cyst Disease - Dr. Kieran Murphy - AJNR

The Untold Story of Dr. Isadore Tarlov

Dr. Frank Feigenbaum discusses Tarlov Cysts

Spinal Meningeal Cysts & Tarlov Cysts

Download: Diagnostic Guidelines, Studies & Reports

Dr. Mieke Hulens M.D.

Large- and Small-Fiber Neuropathy in Patients with Tarlov Cysts
Dr. Kieran Murphy  MB BCh, FRCPC

Management of Tarlov Cysts: an uncommon but potentially serious spinal column disease-review of the literature and experience with over 1000 referrals
Dr. Delshad Abdi M.D.

Operative Treatment of Tarlov Cysts - Outcomes and Predictors of Improvement after Surgery
Dr. Frank Feigenbaum M.D.

Surgical Intervention is Associated with Improvement in Health-Related Quality of Life Outcomes in Patients with Symptomatic Sacral Tarlov Cysts

Have Questions?

contact us at

info@tarlovcystsociety.com

1-888-500-8551

Mailing Address:

64 Lancaster Drive, Red Deer, AB. Canada T4R 2X1

Charitable Registration Number: 799489968RR0001

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