Rare but Real: A Pediatric Male Diagnosed With a Tarlov Cyst and Ehlers-Danlos Syndrome

When most medical professionals hear “Tarlov Cyst,” they tend to associate it with adult females. But a 2022 case report published in Cureus challenges that assumption — and reinforces why awareness and informed clinical investigation matter so much.

In this rare case, an 11-year-old male with hypermobile Ehlers-Danlos Syndrome (hEDS) began experiencing debilitating urinary and bowel incontinence. What started as occasional accidents quickly turned into frequent, life-altering symptoms. After nearly two years of searching for answers, imaging revealed a symptomatic Tarlov Cyst at the S1-S2 spinal level, as well as a tethered cord — both of which required surgical intervention.

This Pediatric Male Diagnosed With a Tarlov Cyst patient story stands out for several reasons:

• Tarlov Cysts are more commonly found in adult women.

• Diagnosis in pediatric patients is incredibly rare, with an estimated incidence of just 0.53% in children.

• It was only by narrowing imaging fields that the cyst was detected — showing how easily such findings can be missed.

• Despite initial postoperative success, the child later experienced symptom recurrence — highlighting the complex and chronic nature of this condition, especially when compounded by a connective tissue disorder like hEDS.

Why This Story Matters

This case isn't just a clinical footnote — it's a warning. Medical professionals must not rule out Tarlov Cysts simply because a patient is young, male, or has “too rare” a condition. The presence of Ehlers-Danlos Syndrome increases the risk of spinal meningeal cysts, but diagnosis requires suspicion, detailed imaging, and a willingness to look beyond the expected.

In this patient’s journey, early detection was missed, and questions remain about whether more proactive care could have altered the long-term outcome.

Pediatric Stories Matter

What We’re Doing at the Tarlov Cyst Society

At the Tarlov Cyst Society, we exist to challenge outdated assumptions and bring research like this to light.

We are:

• Sharing case reports like this one to help change the clinical narrative.

• Educating both patients and providers about the possible comorbidities, like Ehlers-Danlos Syndrome and tethered cord syndrome.

• Offering educational tools and diagnostic guidance to help patients advocate for themselves and help clinicians recognize symptomatic Tarlov Cysts across age and gender lines.

This is why we urge patients, caregivers, and physicians to look beyond the typical profile. Tarlov Cyst Disease can and does affect people outside the norm. We must raise awareness to ensure no one — child or adult — is dismissed due to the rarity of their condition.

Conclusion

This story is proof: Tarlov Cysts in pediatric male patients can and do happen, especially when conditions like Ehlers-Danlos Syndrome are present. We encourage medical teams to treat incontinence, nerve pain, and chronic musculoskeletal symptoms with the seriousness they deserve, even in unexpected cases.

Let’s work together to ensure that rare doesn’t mean invisible.

Read the full case report here: Cureus Publication – Tarlov Cyst in Pediatric Patient With Ehlers-Danlos Syndrome - https://pmc.ncbi.nlm.nih.gov/articles/PMC9550184/

Tags: Pediatric Male Diagnosed With a Tarlov Cyst, Ehlers-Danlos Syndrome, Spinal Cysts in Children, Rare Disease Awareness, Tarlov Cyst Case Report