• 15 Sep, 2025
• Fatemeh Falah

A Disease to Be Believed: Canadian Tarlov cyst patients demand acknowledgment of their pain by healthcare professionals

Tarlov cysts (also known as meningeal or perineurial cysts) are fluid-filled sacs found at the spine’s nerve roots, usually in the tailbone area. They are present in an estimated five to nine per cent of the general population, though women, for unknown reasons, are much more likely to get Tarlov cysts — three research papers on the subject report that women make up about 70 per cent, 88 per cent, or 90 per cent of Tarlov cyst cases. The cysts are typically benign, producing no symptoms.

But in rare cases, they can become symptomatic. This often follows traumatic incidents such as falls, automobile accidents, heavy-lifting injuries, and childbirth. According to research published in the International Journal of Physical Medicine and Rehabilitation in 2017, 16.7 percent of Tarlov cyst patients reported that trauma was the trigger that elicited or aggravated their symptoms.

The first symptoms are usually present long before an official diagnosis of symptomatic Tarlov cyst disease. Cerebrospinal fluid, the liquid that cushions the brain and spinal cord, flows into these cysts, causing them to expand. As the cyst grows larger, pressure on the nerves becomes progressively worse, and neurological symptoms appear. Patients with Tarlov cyst disease often experience back and leg pain, as well as a burning sensation and numbness in the lower limbs, sensory disturbances, abnormal urination and defecation, and sexual dysfunction. The wide variety of symptoms and rarity of the disease can lead to misdiagnosis.

“That week in April, I ended up going to the emergency four different times because I wasn’t getting any adequate medical help. They just kept offering me different pain medications. I think that most doctors don’t know anything about this illness, so they don’t know how to treat it,” said Tara.

Like many others dealing with complex medical conditions, Tara turned to the Internet for answers. She found a Facebook group where people experiencing the same pain from this rare disease shared their stories. It was there that she connected with Vera Cheng and Kayla.

Kayla, who asked that her last name be withheld, first experienced symptoms two years ago at the age of 32 after helping lift a patient at the hospital where she was working. She did not disclose her job title at the hospital but mentioned that she has quit her job.

Kayla had pain in her lower back for the first three months, but the symptoms then progressed into her groin and down her legs. “It feels like I have a 24/7 buzzing sensation or an internal vibration,” she said. “I have pain at the bottom of my feet, like a burning sensation in my toes. It’s hard to sit. The pain flares up when I’m standing or walking, which has really reduced my mobility. Once the pain flares up, it takes a long time for it to go back down.”

She says there are seven to eight cysts in her sacrum, a triangular bone at the base of the spine, just above the tailbone. Asked about when she received a formal diagnosis, Kayla replied, “I have not had ‘Tarlov cyst disease’ written down on any paperwork as a diagnosis. I have a mixed bag of Canadian doctors, some acknowledging that I have symptomatic Tarlov cysts causing pain and neurological symptoms like radiculopathy in my legs and feet, while others dismiss the cysts entirely. I don’t think I have ever spoken to a Canadian patient who has had a doctor write ‘TCD’ down as a formal diagnosis.”

Kayla has spoken to a neurologist, three Canadian neurosurgeons, her family doctor, an anesthesiologist, and several nurse practitioners in total.

Vera Cheng is 40 years old and used to work as a social worker. She first had symptoms of the disease after a car accident six years ago. Her flare-ups now bring on “excruciating, crushing pain, as if a concrete pillar is pressing down on me,” she said.

“Every time you think that the pain can’t be worse than this, it gets worse. And then, you think it’s just a flare-up, but then the flare-up becomes your new baseline.”

Pain has impacted every part of her life. “What do you do on a day-to-day basis that requires sitting? Everything,” she said. “You sit to work, to go to school, to drive, to have dinner with friends. But if you can’t sit, how do you do all those things? As walking becomes harder, you walk less and less. You can’t sit to drive, and now you can’t walk to get anywhere. Your world gets smaller and smaller.”

When Vera first reported her symptoms to her now-former doctor, nothing was done for her. As her condition worsened, she reported her symptoms again, and still, nothing was done. Eventually, she saw a doctor who recommended scans, and the scans revealed multiple large cysts.

“There was nothing further here,” she said. “Nobody suggested treatment. Nobody acknowledged that they could be symptomatic, because the history of it is that many radiologists see these on scans. They think they’re asymptomatic and incidental. I was fortunate that the radiologists acknowledged my cysts on the scan. Since the cysts were so big, I didn’t experience the runaround that many patients face. While the damage done by these cysts was clearly documented, I still couldn’t get the help I needed. In fact, the most devastating part is watching your body get worse and worse with very serious neurological symptoms and not being able to get any help.”

Eventually, Vera was referred to specialists, but they would not see her. “My referral was just rejected. I was one of the ones that they didn’t even bother to see,” she recalled. Tara said she was referred to a neurosurgeon in New Westminster, but her appointment wasn’t until August 2026, and it was just a phone appointment, not in-person care.

Without proper acknowledgment of their cysts, patients may be misdiagnosed with unrelated conditions, which might lead to unnecessary and invasive treatments. According to Kayla, who tracks the experiences of Tarlov cyst sufferers online, many patients are even told their symptoms are “all in their head”; they might falsely be labelled with psychiatric disorders.

“They will just say that the woman’s basically crazy. They’ll diagnose them with, like, fibromyalgia or functional neurological disorder or depression and anxiety. Or they’ll just say women are malingering and faking it, or it’s psychosomatic. All these women can feel the pain when they sit, lie down, or walk, but then all these male doctors tell them that they’re wrong. There’s a lot of gender bias when it’s a condition that mostly affects women,” Kayla said.

Accusations of gender bias in healthcare and chronic pain treatment are not a new. That is particularly the case when it comes to rare diseases such as Tarlov cyst.

Dr. Nader Ghasemlou, a neuroscientist who leads the Pain Chronobiology and Neuroimmunology Lab at Queen’s University, said the unusual nature of the disease helps explain why medical professionals often overlook it.

“The incidence of Tarlov cysts is around five to 10 per cent of the population, let’s say 7.5 per cent. Then, only one per cent of those people experience pain or complications associated with the cysts. So, at most, 0.1 per cent of the population is dealing with this. That’s actually a significant number of people when you think about it. However, I’m guessing, if you’re a radiologist, and you’re looking at spine scans every day, and you see these cysts happening all the time, and it’s not something that the person was there for, you say, ‘These are normal. This happens all the time, and so it’s uneventful.’”

Historically, Ghamselou said, experimental work in medicine was almost exclusively done on male animals. The reasoning was that male mice don’t have menstrual cycles, so their biology was considered less variable and easier to study over long periods. However, groundbreaking work by Jeffrey Mogil at McGill University in Montreal and Michael Salter at the University of Toronto has changed this perspective. They showed that the menstrual cycle doesn’t affect experimental consistency. More importantly, the two researchers demonstrated that the mechanisms of pain differ fundamentally between male and female mice — and likely between men and women. This discovery has opened up a new field of research examining why women experience more pain than men.

There’s also an enduring misconception that chronic pain is purely psychological. The International Association for the Study of Pain defines pain as physical, psychological, and social in nature. While emotional responses can contribute to pain, this doesn’t mean the pain isn’t real. Especially with conditions like Tarlov cyst disease, where scans clearly show a physical cause, dismissing patients’ pain as imaginary reflects a lack of education rather than valid reasoning. This approach is not only wrong but deeply harmful, Ghasemlou said.

Dr. Millan Patel, a clinical professor in medical genetics at the University of British Columbia and the co-founder of the Rare Disease Foundation said that an inherent sexism or chauvinism in the system has tended to lead healthcare professionals to discount women’s complaints. For example, he said, research shows women with heart disease die from heart attacks much more often than men because their symptoms aren’t taken seriously. Women are 50 per cent more likely to be misdiagnosed with a heart attack even though they carry the same risk of developing heart disease as men.

Another problem, Patel said, is that when a doctor accustomed to diagnosing known conditions is confronted with something unfamiliar or poorly understood, he may be inclined to dismiss the issue altogether.

“If it’s not obvious, they just say, ‘Nah, it’s all in your head,’ because the alternative would be to fully accept what the patient says and then do a whole pile of work in an area you don’t understand well. And so the easy button is just to discount it,” said Patel. “I wonder if there’s a certain intellectual laziness in some physicians.”

Dr. Kieran Murphy, a neuroradiologist at Toronto Western Hospital, has been treating Tarlov cyst patients for the past 20 years. He says about 20 to 30 per cent of them are symptomatic. In a recently published research paper, he concludes that inadequate knowledge due to the rarity of the cysts or gender bias by physicians has resulted in patients going untreated or facing significant delays in treatment.

It typically takes 10 to 15 years to change medical practices, Murphy said, especially for diseases once considered incidental or asymptomatic. “It’s just a matter of educating physicians, most of whom stop learning new things once they leave medical school. Physicians need to be re-educated.”

Dr. Frank Feigenbaum, a Dallas-based neurosurgeon who specializes in treating patients with Tarlov cysts, says that it’s only more recently that the fact that Tarlov cysts can cause symptoms has started to become more mainstream thinking. The Centers for Disease Control and Prevention in the United States and the Centers for Medicare and Medicaid Services, he said, have designated Tarlov cysts as a potential pathology that causes symptoms in the spine and have given it a specific code.

“These are relatively new developments, so as time goes on, more and more people will become aware that Tarlov cysts can cause symptoms and what those symptoms might be. But it takes time for people to learn—or unlearn—what they’ve heard in the past. Specifically, in previous decades, the dogma was that Tarlov cysts never cause symptoms or are always asymptomatic. However, ‘never’ and ‘always’ in medicine usually turn out to be incorrect,” he said.

The saying “What doesn’t kill us makes us stronger” does not apply to Tarlov cyst patients, at least not in a medical sense. People who have multiple symptomatic Tarlov cysts are likely to experience ongoing nerve damage, leading to permanent chronic pain and disability.

Doctors generally prescribe antidepressants and anti-seizure medications for Tarlov cyst disease. These medications affect the neurotransmitters in the brain, which helps dial down the nerve pain. According to Ghasemlou, gabapentin and pregabalin are the frontline medications for chronic pain. “This is the standard treatment for everyone,” he said. “If it doesn’t work after six to twelve months, then other options are to try to reduce the pain.”

Kayla says she’s on amitriptyline and gabapentin. “Amitriptyline has gradually stopped working as effectively for me, so I am experiencing more pain in my legs,” she said. “I switched from taking pregabalin, which never worked, to gabapentin. However, within a few weeks of taking it, a significant amount of my hair has started to fall out.”

The constant pain and fear of becoming permanently paraplegic, coupled with a lack of support and dismissal from medical professionals in Canada, leaves some Tarlov cyst patients feeling that they have no choice but to seek medical help outside the country, which comes with a hefty price tag.

The cost of Tarlov cyst surgery performed by Feigenbaum, who treats patients from around the world in Dallas and at a hospital in the Mediterranean island nation of Cyprus, hovers around $80,000, depending on the number and size of the cysts.

The high cost of private, out-of-country surgery means that patients often must spend their life savings or raise money through a bank loan, remortgaging their houses, or asking family members for money. Both Tara and Vera set up a fund-raising campaigns.

Murphy said that inadequate or dismissive treatment of Tarlov cyst patients can leave them desperate, or even suicidal.

“In Canada, doctors can get away with treating patients very badly because they have so many patients,” he said. “Unfortunately, our patients suffer.”

But Murphy also expressed strong opposition to out-of-country surgeries. “I don’t believe in the medical tourism that’s going on. There are too many operations being performed. Our doctors in America often treat this as a cash cow, performing surgeries on everyone, sometimes causing harm to patients. This is a serious issue because commercially-oriented American physicians can exploit patients, leaving them in worse conditions. I’ve seen many patients return from U.S. surgeries devastated, suffering from bowel and bladder issues; some are even in diapers. Worse still, some patients travel to places like Cyprus for surgery, and no one knows what’s happening in places like that.”

He encouraged Tarlov cyst sufferers not to assume that going to the U.S. is a solution. “Many of those patients are coming back no better but financially poorer – significantly poorer,” he noted.

“Personally, I am not aware of a case in Canada where a patient who had surgery [with me] ended up paralyzed,” said Feigenbaum.

It is possible to experience some weakness or numbness that wasn’t present before surgery, but the goal of the procedure is to relieve pressure on the nerves and give the body a chance to heal them. That’s the intent, he added.

Patients with symptomatic Tarlov cysts have nerves that have been compressed and injured. It’s similar to any spinal pathology that puts pressure on nerves and causes damage, said Feigenbaum.

“As surgeons, we can go in and relieve that pressure—for example, by treating Tarlov cysts that are pressing on the sacral nerves—but we cannot heal the nerves themselves. We simply don’t have that technology. Only the patient’s body can heal the nerves, and so far, nobody has figured out how to heal somebody’s nerves for them.”

Because of this, Feigenbaum added, the recovery process after surgery is often a mixed picture. Some symptoms improve right away, while others take weeks or months. Depending on the extent of nerve damage, some may not improve at all. In cases where the nerves are severely injured, the body may not be able to heal them fully. Additionally, some symptoms can temporarily worsen due to nerve irritation from the surgery itself.

“From my data, 70 to 80 per cent of patients experience significant improvement in sacral, buttock, and leg symptoms, including an increased ability to sit for longer periods. The percentage of patients who report worsened symptoms is usually in the low single digits,” he said.

Feigenbaum notes that the decision to undergo surgery is a difficult one for patients. If their nerves are being continuously compressed, and they’ve exhausted other treatment options with no relief, they’re left with a choice: continue deteriorating or take the risk that surgery could place them in the category of 70–80 per cent who improve, rather than the small percentage who experience worsening symptoms. It’s a deeply personal decision, and those who haven’t been in that position may struggle to fully understand what it’s like to weigh those risks while watching their quality of life decline.

“In tracking several hundred patients for two years post-surgery, we found that 70 to 80 per cent experienced significant improvement in sacral, buttock, and leg symptoms, 60 to 70 per cent saw improvement in symptoms in the private areas, and 50 to 60 per cent had better bladder and bowel function. These are the statistics I share with patients so they can make an informed decision, weighing both the risks and the potential benefits,” said Feigenbaum.

Tara, who travelled to Cyprus for surgery by Feigenbaum in October, said two other Canadians were also in the Cypriot hospital with her. “They came to get surgery because they were also not receiving care back home,” she said.

Vera was treated by Feigenbaum in 2023. “Everything about the experience was positive for me,” she said. “It was very well-organized, and they took great care of me.” She added, however, that there is a misconception about Tarlov cyst surgery, as many people assume recovery is immediate.

“Just because I’ve had surgery doesn’t mean I’m 100 per cent better right away. It’s not like getting tonsils or an inflamed appendix out,” she said. “Nerves take time to heal, if they heal at all. Some people have been fortunate to get surgery soon after symptom onset. However, I was not able to get surgery as quickly as others. I have had this disease a lot longer than some people before getting surgery. My nerves have been compressed by very large cysts for a very long time.”

Kayla spoke to Feigenbaum, but has so far decided not to travel to Cyprus for surgery. In part this is because she now has permanent nerve damage. “I know if I had the surgery, I wouldn’t go back to the normal self that I was before this happened.” But she also worries about complications. “I personally don’t want to travel across the world to a tiny island to have spine surgery like that,” she said. “What if something were to happen? You’re halfway across the world, and you’ve spent all this money. It’s just scary.”

Tara’s GoFundMe page was updated on December 30, 2024, with a message to those who contributed to her campaign and a new photo of her smiling brightly while holding her dog.

“It’s hard to believe that it has already been two months since my surgery, and I’m amazed at how well I’m doing! For the first time in almost 2 years, I can say that I have hardly any pain. I’m finally returning to being active and living my life again, a reality that didn’t seem possible just a few months ago. Every day feels like a gift, and I’m so grateful for this incredible turnaround.”

References:

Clarke, G., Kapoor, V., & Baxter, J. (2016). Are Tarlov cysts being identified and reported on lumbar spine MRI scan in patients with sciatica? Journal of Radiology Case Reports, 40(5), 276–280. https://doi.org/10.1055/s-0036-1582706

Electromyography and a review of the literature provide insights into the role of sacral perineural cysts in unexplained chronic pelvic, perineal and leg pain syndromes. (2017). ResearchGate. https://www.researchgate.net/publication/317684608_Electromyography_and_A_Review_of…

Feigenbaum, F. (n.d.). Tarlov cysts truths with my surgeon, Dr. Frank Feigenbaum [Video]. YouTube. https://www.youtube.com/watch?v=Uq4OrVa6deM

Medical care experiences of 85 Tarlov cyst patients. (n.d.). [Video]. YouTube. https://www.youtube.com/watch?v=WuDW5x2PyuI

National Organization for Rare Disorders. (n.d.). Tarlov cysts. https://rarediseases.org/rare-diseases/tarlov-cysts/

Neglected Tarlov cysts: A case of a Tarlov cyst with spermatorrhea. (2021). ResearchGate. https://www.researchgate.net/publication/351432174_Neglected_Tarlov_cysts_a_case_of_a_Tarlov_cyst_with_spermatorrhea

Symptomatic Tarlov cysts are often overlooked: Ten reasons why—A narrative review. (2019). ResearchGate. https://www.researchgate.net/publication/333025384_Symptomatic_Tarlov_cysts_are_often_overlooked_ten_reasons_why-a_narrative_review

Symptomatic Tarlov cysts: An overlooked and dismissed spine condition. (n.d.). [Video]. YouTube. https://youtu.be/1_bkZhCtOI4