Tarlov cysts can be tricky. About 5 to 9% of people in the US have them, according to the American Association of Neurological Surgeons (AANS), but many never show symptoms.

“A lot of Tarlov cysts are seen in radiology scans, but the ones that require treatment are the ones that cause symptoms,” says William C. Welch, MD, FACS, FICS, Vice Chair of the Department of Neurosurgery at Penn Medicine.

When symptoms do arise, physicians often mistake them for herniated discs, or even gynecological conditions in women. That misdiagnosis happens because Tarlov cysts typically occur in the sacral area of the spine, very close to the pelvic region.

Also known as perineural cysts, Tarlov cysts grow at the nerve roots in the spine, where they fill with fluid. For some unknown reason, they primarily affect women.

People typically go to the doctor when they start experiencing symptoms. Pressure within or on the cysts might cause symptoms and can even result in nerve damage.

How to know you have a Tarlov cyst

How do you know if you have a Tarlov cyst? They can be painful. One of Dr. Welch’s patients described it as a feeling like someone was “grinding glass” in her pelvic area. Having surgery significantly lowered her pain and improved her quality of life, Dr. Welch says.

Dr. Welch says symptoms can include:

• Vaginal pain
• Pain in the buttocks
• Pain around the penis
• Changes in bladder and bowel functions
• Muscle weakness
• Difficulty sitting or standing for long periods
• Changes in sexual function

Dr. Welch is no stranger to Tarlov cysts. Throughout his career, he has performed many surgeries to remove Tarlov cysts that help alleviate symptoms for patients. However, surgery isn’t the only option.

Four questions to ask

If you’ve been diagnosed with a Tarlov cyst or suspect you may be experiencing symptoms, check out the 4 questions Dr. Welch recommends asking your physician or neurosurgeon.

Is a Tarlov cyst causing my symptoms?

If you’re experiencing symptoms of Tarlov cysts or back pain in general, talk with your primary care physician. Your physician might order an MRI and then refer you to a specialist—such as a neurosurgeon—if the MRI shows a cyst.

However, just because you’re referred to a neurosurgeon doesn’t mean surgery is your only option. It depends on your symptoms.

“We treat patients, not MRI scans,” Dr. Welch says.

What nonsurgical treatments would you recommend?

“Even when patients are symptomatic, surgery doesn’t always work out,” Dr. Welch says. However, if symptoms persist and cause severe pain, a neurosurgeon might recommend a surgical approach to shrink or close the cyst.

Your neurosurgeon or physician can work with you to develop a plan that fits your lifestyle, but keep in mind that no matter which options you choose, symptoms could flare up without warning.

What causes these cysts?

Even nearly 80 years after their discovery in 1938, the scientific community still can’t say definitively what causes Tarlov cysts, according to the Tarlov Cyst Foundation. Theories include:

• Falls
• Heavy lifting
• Childbirth
• Epidurals
• Automobile accidents

Although exact causes remain unknown, it’s natural to wonder why you’re experiencing symptoms. Talk with your physician or surgeon about your own medical history and experiences. This might shed light on possible causes.

How many surgeries have you performed on Tarlov cysts?

If you decide to go the surgical route, don’t be shy about asking your neurosurgeon how many surgeries he has done on patients with Tarlov cysts. Ask if you can talk to any of their patients about their outcomes before you decide.

You want to feel confident in your decision, and your surgeon should be willing to answer any questions about experience and expertise.