Grok Highlights Latest Tarlov Cyst Research

The latest news and research in Tarlov Cyst Disease.

Scott Sullivan

2/25/202614 min read

Grok's Response:

Hey Scott! I'm doing great, thanks for asking—always pumped for a deep dive into interesting medical topics like this. How about you?

Here's a fresh, updated write-up on Tarlov Cyst Disease (also known as sacral perineurial cysts or Tarlov perineurial cysts). I've incorporated the latest available insights from recent studies and publications, with a focus on long-term surgical outcomes from Dr. Frank Feigenbaum and contributions involving Dr. Rudolph Schrot. I've also added a dedicated section on the connection to Persistent Genital Arousal Disorder (PGAD) (now often termed PGAD/GPD or genito-pelvic dysesthesia), highlighting key work from Dr. Barry Komisaruk, Dr. Irwin Goldstein, and Dr. Choll Kim.

What Are Tarlov Cysts?

Tarlov cysts are fluid-filled sacs (perineurial cysts) that form on the sacral nerve roots, typically where cerebrospinal fluid (CSF) accumulates abnormally in the nerve root sleeves. They are most common in the sacral region (S1–S4) due to high hydrostatic pressure and lack of bony enclosure in the foramina. These cysts are often incidental findings on imaging, but when symptomatic, they can cause significant issues.

Prevalence is higher in women (around 90% in symptomatic cases), and risk factors include connective tissue disorders like Ehlers-Danlos syndrome. Small cysts are usually asymptomatic, but larger ones (>1.5 cm) or multiple cysts can compress sacral nerve roots, leading to progressive symptoms.

Symptoms

Symptomatic Tarlov cysts often present with:

Sacropelvic neuropathic pain (lower back, sacral, or perineal pain)
Radicular pain in the legs, numbness, or weakness
Bladder, bowel, or sexual dysfunction
Sitting intolerance (patients may only tolerate short periods)
In severe cases, cauda equina-like syndromes, muscle atrophy, or bone erosion

Symptoms can worsen over time due to ongoing nerve compression or irritation.

Diagnosis

Diagnosis relies on MRI (showing sacral cysts with nerve root involvement), clinical correlation, and ruling out other causes (e.g., lumbar disc issues). Symptomatic cysts are underrecognized, and patients often face delays or misdiagnosis.

Treatment Options

Conservative management (pain meds, physical therapy) is first-line for mild cases. Interventional options like percutaneous aspiration with fibrin glue have variable success but higher recurrence. Surgery is considered for disabling symptoms.

Recent systematic reviews (including a 2023/2024 publication co-authored by Dr. Feigenbaum and Dr. Schrot) analyzed percutaneous vs. open surgical approaches. Surgical techniques generally show better long-term outcomes with lower recurrence, though with slightly higher risks (e.g., CSF leaks). Cyst-wrapping (circumferential reinforcement of nerve roots without excision) stands out for permanently reducing cyst size, reconstructing sleeves, preventing axonal injury, and potentially aiding regeneration.

Long-Term Results from Dr. Feigenbaum and Dr. Schrot

Dr. Frank Feigenbaum (Dallas, TX) has one of the largest series, with outcomes tracked in prospective studies. His technique often involves draining and wrapping cysts.

A key 2025 publication (Neurosurgery) on 417 patients (average age ~52, mostly female) reported significant 2-year improvements post-surgery:

Tarlov Cyst Quality of Life scores improved (3.2 to 2.1, p<0.001)
Pain at rest/activity dropped markedly (VAS scores halved)
Oswestry Disability Index improved (45.5 to 31.6)
SF-36 scales showed gains in physical/social functioning, bodily pain, etc.
Sitting tolerance increased from 15 to 45 minutes
Improvements continued from 1 to 2 years in some domains (e.g., physical/social functioning)

This is noted as the first study showing sustained health-related quality-of-life gains up to 2 years using both general and disease-specific measures. Earlier data from his practice (e.g., 12-month follow-ups) showed ~70% improvement in sacral/leg pain and numbness, with trends toward sustained benefits.

Dr. Rudolph Schrot (Sacramento, CA) has contributed to surgical approaches and co-authored the 2023/2024 systematic review emphasizing cyst-wrapping for superior long-term results (lower recurrence vs. resection or percutaneous methods). In series involving wrapping, outcomes favor reduced cyst recurrence and better symptom control over extended follow-up, though surgical risks (e.g., infection, leaks) are noted.

Both experts highlight that surgery benefits larger/symptomatic cysts, with cyst-wrapping offering the best durability by addressing root cause without excessive nerve trauma.

Connection to Persistent Genital Arousal Disorder (PGAD/GPD)

PGAD (or PGAD/GPD) involves unwanted, unrelenting genital arousal sensations without desire, often causing distress, emotional lability, or suicidality. It can overlap with genito-pelvic dysesthesia (abnormal sensations/pain).

Research links a subgroup of PGAD cases to sacral Tarlov cysts or related sacral radiculopathy (e.g., from cauda equina irritation). In 2012, Dr. Barry Komisaruk and colleagues reported high Tarlov cyst prevalence in PGAD patients, shifting views from purely psychogenic to potentially neurogenic origins.

Dr. Irwin Goldstein, Dr. Komisaruk, and Dr. Choll Kim have advanced multidisciplinary approaches:

They developed diagnostic algorithms and consensus guidelines (e.g., 2021 ISSWSH review) emphasizing sacral imaging and radiculopathy evaluation.
Case reports/series show surgical treatment of Tarlov cysts (or related issues like annular tears) alleviating PGAD symptoms in select patients.
Dr. Kim has published on endoscopic spine surgery for radiculopathy-induced PGAD (even without cysts), with symptom relief.
Collaborative protocols (e.g., involving neurosurgery and sexual medicine) have successfully managed cases, including penile pain variants mediated by sacral root radiculitis from cysts.

Evidence remains emerging—Tarlov cysts may contribute via aberrant sensory nerve irritation—but not all PGAD cases involve cysts, and the relationship is under study. Multidisciplinary care (neurology, urology, neurosurgery, sexual health) is key.

Final Thoughts

Tarlov cyst disease is underrecognized but treatable, especially with refined surgical techniques like those from Dr. Feigenbaum and Dr. Schrot showing promising long-term quality-of-life gains. The PGAD link highlights the cysts' impact on sacral nerve function beyond pain.

If you're dealing with this personally or know someone who is, consulting specialists (e.g., those with high-volume experience) and getting updated imaging/evaluations is crucial. Research continues to evolve—let me know if you'd like more details on any part!

Grok Highlights Latest Tarlov Cyst Research

What Are Tarlov Cysts?

Symptoms

Diagnosis

Treatment Options

Long-Term Results from Dr. Feigenbaum and Dr. Schrot

Connection to Persistent Genital Arousal Disorder (PGAD/GPD)

Final Thoughts

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Earn cash back with coupons for your favorite grocery items, plus ...

Not only will you help TarlovCyst.org,
And not only will it cost you nothing,
but ibotta will even give you an extra

You can also help us to spread awareness, education and support with donations via PayPal or Venmo.
We are not yet registered as a 501(c)(3) organization, so we're sorry that donations are not tax-deductible at this time.