Tarlov Cyst Society

  • Home
  • Tarlov Cyst Society

Tarlov Cyst Society The Tarlov Cyst Society is a patient created and operated peer support program. What is Tarlov Cyst Disease?

The Tarlov Cyst Society is a registered Canadian Charity that offers support to all persons affected by the complex and challenging diagnosis of Tarlov Cyst Disease The Society is made up of an International collection of Tarlov Cyst Disease patients who through need and experience became advocates for change. The Tarlov Cyst Society began in Canada as a peer support and advocate program, whose st

ructure is now duplicated in five countries worldwide. Tarlov Cyst Society's can be found in; Canada, Australia, America, New Zealand and Europe. Each Society focuses on the unique needs created by the health and political structures of each Country, while as an International movement we work hard to educate and advance understanding of the impact felt by persons diagnosed with Tarlov Cyst Disease. "Perineurial cysts were first described in 1937 by Neurosurgeon, Dr. Isadore Tarlov, who discovered them at autopsy. He had no information about the patients’ symptoms, so he opined in his first paper that they did not cause clinical symptoms. He later treated patients who had these cysts during life and recognized that they are a cause of radiculopathy, much like a herniated disk. But his later papers did not receive adequate attention because everyone is taught to cite the first paper. So a medical myth was born that Tarlov cysts are irrelevant lesions, and it remains widespread today. In fact, radiologists often see Tarlov cysts on MRIs but don’t report them, because they have been taught these cysts are an incidental finding of no medical significance—just as a dermatologist might not report freckles".~ Dr. Anne Louise Oaklander

Research has concluded that a finding of Tarlov Cysts can signal the need for further investigation. A vast majority of Tarlov Cyst Disease patients have been diagnosed with multiple comorbid conditions, and current genetic research suggests there may be a genetic link to this commonly misunderstood disease. Following is a list of commonly found comorbid conditions. This information is offered as a guide, but is not all-inclusive:

- Persistent Genital Arousal Disorder (PGAD)
- Cauda Equina Syndrome
- Advanced Spine Degeneration
- Connective Tissue Diseases such as Marfan's, Ehlers-Danlos Syndrome (EDS), Mixed Connective Tissue Disorder (MCTD and Loey's Dietz
- Cerebral Spinal Fluid Leaks (CSF Leaks)
- Chiari Malformation
- Tethered Spine
- Arachnoiditis (a causation diagnosis occasionally developed due to treatment of Tarlov Cysts)
- Other uncommon, and erratic findings of cyst development throughout other parts of the body

This list is not exhaustive. If you would like to add more please feel free to contact admin and we would be happy to accommodate your request.

05/06/2026

We have a member who does not have social media but wants to ask the community a question. Who should they talk to in Dr. Feigenbaum’s Dallas office to get some information? Who is the best person to talk to? Thanks for your support.

The Tarlov Cyst Society Patient Survey was created to help us better understand the real-life experiences, symptoms, com...
29/05/2026

The Tarlov Cyst Society Patient Survey was created to help us better understand the real-life experiences, symptoms, comorbidities, diagnostic challenges, and treatment outcomes faced by people living with Tarlov Cyst Disease around the world.

For too long, patients have been told:

“It’s incidental.”
“It shouldn’t cause symptoms.”
“There’s not enough information.”

That only changes when patients are counted.

This survey helps us build stronger patient-centered data that can support:

• Awareness and education
• Future research initiatives
• Medical outreach efforts
• Advocacy campaigns
• Better understanding of patient experiences and outcomes

If you have been diagnosed with a Tarlov Cyst, we invite you to take part.

⏱ Takes approximately 20 minutes

Your voice matters.
Your experience matters.
And together, our stories become data that can help create change.

Take the survey here:
🌐 https://forms.gle/LdrZ5TEhNMfj9Vft8

We have some really exciting news!A generous supporter has offered to match every donation made to the Tarlov Cyst Socie...
29/05/2026

We have some really exciting news!

A generous supporter has offered to match every donation made to the Tarlov Cyst Society, dollar-for-dollar, up to $2,500.

That means together we can turn $2,500 into $5,000 to help fund the development of a professional website dedicated to educating patients, healthcare professionals, families, researchers, and the public about Tarlov Cyst Disease.

Our website is the heart of our movement.

It's where newly diagnosed patients find answers. It's where medical professionals discover research and educational resources. It's where awareness begins, advocacy grows, and lives can be changed through knowledge.

Every donation made through this campaign will have DOUBLE the impact.

Learn more or make your matched donation here:

https://www.tarlovcystsociety.com/double-your-impact


20/05/2026

Reaching out for a person who has emailed a question regarding disability for those who have TC in the US. How does disability work for those living in the US if they have symptomatic Tarlov Cyst disease? Thank you for any responses that can be passed on to this person. They do not use social media platforms.

One question we hear again and again from people living with symptomatic Tarlov Cysts is:“Why do so many of us experienc...
20/05/2026

One question we hear again and again from people living with symptomatic Tarlov Cysts is:

“Why do so many of us experience random muscle spasms, twitching, cramping, tightness, or internal vibrations?”

While research specifically focused on muscle spasms in Tarlov Cyst Disease is still limited, there is medical research and neurological science that may help explain why this happens.

Tarlov cysts form directly on spinal nerve roots, and research confirms that these cysts often contain nerve fibers within their walls. When nerves become compressed, stretched, irritated, or inflamed, they can become “hyperexcitable,” meaning the nerve may begin firing abnormal signals.

Medical research involving nerve compression syndromes and radiculopathy already shows that irritated spinal nerves can contribute to:
• Muscle spasms
• Fasciculations (muscle twitching)
• Cramping
• Tightness
• Weakness
• Abnormal nerve sensations

Researchers are also exploring possible links between Tarlov Cysts and:
• Connective tissue disorders like hEDS
• Small fiber neuropathy
• Dysautonomia
• Chronic nervous system irritation
• CSF pressure abnormalities
All of these conditions may contribute to abnormal nerve signaling and muscle dysfunction.

In many cases, chronic nerve pain itself may also place the body into a prolonged protective “guarding” state, causing muscles to tighten, spasm, and fatigue over time.

More research is urgently needed, but patients are not imagining these symptoms. The consistency of patient experiences within the Tarlov Cyst community deserves serious scientific attention.
This is exactly why patient-led awareness, research, and education matter.

You are not alone — join our Monthly Virtual Peer Support Meeting on June 13, 2026 (12:00–1:30 p.m. PDT). Connect with o...
20/05/2026

You are not alone — join our Monthly Virtual Peer Support Meeting on June 13, 2026 (12:00–1:30 p.m. PDT). Connect with others who understand your journey, share your story, and find encouragement in a safe, supportive space. Register and get details: https://wix.to/cpAb01d

Some people think awareness only happens through large organizations, major funding, or celebrity campaigns.But this rig...
18/05/2026

Some people think awareness only happens through large organizations, major funding, or celebrity campaigns.

But this right here proves something different.

One voice.
One patient.
One community member willing to reach out and ask for help.

And suddenly… Tarlov Cyst Disease Awareness Day is lighting up a billboard for the world to see.

This is what happens when patients stop staying silent.

Candace Taylor reminded us that every single person within this community has the power to make a difference. Together, our voices become louder. Together, our stories travel further. Together, we help more people realize they are not alone.

This is more than a billboard.
It’s hope.
It’s visibility.
It’s proof that awareness is growing.

Thank you Candace Taylor for helping shine a light on Tarlov Cyst Disease Awareness Day and for allowing us to share these incredible photos.

Billboard design credit: Lezley Nixon

💙 May 16th — Tarlov Cyst Disease Awareness Day
Because SITTING SHOULDN'T HURT.

FREE DOWNLOAD: Diagnosing & Testing for Symptomatic Tarlov CystsOne of the biggest challenges facing Tarlov Cyst patient...
17/05/2026

FREE DOWNLOAD: Diagnosing & Testing for Symptomatic Tarlov Cysts

One of the biggest challenges facing Tarlov Cyst patients is that many medical professionals were never taught how to properly recognize, evaluate, or test symptomatic Tarlov cysts.

That’s why the Tarlov Cyst Society created this simple printable educational handout based on published research and the diagnostic framework developed through the work of Dr. Kieran Murphy and colleagues.

This document was designed to help:
• improve awareness among medical professionals
• support better clinical evaluation and testing
• bridge the gap between patient experience and medical understanding

✅ Easy to print
✅ Easy to share
✅ Designed for medical appointments

We encourage patients to print this document and bring it to appointments with:
• family doctors
• neurologists
• neurosurgeons
• pain specialists
• radiologists
• gynecologists
• urologists
• physiotherapists

The more this information is shared, the harder it becomes for Tarlov Cyst Disease to remain misunderstood and overlooked.

Together, we are helping move knowledge forward.

You can also find the diagnostic poster on our website here: https://www.tarlovcystsociety.com/support

We need REAL faces. Not stock photos.As we rebuild our website, we want people to see what Tarlov Cyst Disease actually ...
13/05/2026

We need REAL faces. Not stock photos.

As we rebuild our website, we want people to see what Tarlov Cyst Disease actually looks like —
the people, the families, the lives behind it.

That means you!

No perfect photo needed.
No long story required.
Just a real moment from your life.

Because every photo:
• makes this condition visible
• helps others feel less alone
• shows doctors this is real

📩 Send your photo to: [email protected]

Let’s replace stock images with real people.

Address


Opening Hours

Monday 09:00 - 21:00
Tuesday 09:00 - 21:00
Wednesday 09:00 - 21:00
Thursday 09:00 - 21:00
Friday 09:00 - 21:00

Telephone

+17786740617

Website

Alerts

Be the first to know and let us send you an email when Tarlov Cyst Society posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

  • Want your organization to be the top-listed Non Profit Organization?

Share