FAQs

The exact cause of Tarlov cysts is unknown. In many cases, the Tarlov cysts may have been present for years or at birth without causing any symptoms. The onset of symptoms can start spontaneously or triggered by a traumatic event such as a fall, car accident, childbirth, epidural injections, heavy lifting, viral illness, medical procedure, or unrelated surgery.

About 1 in 20 people have asymptomatic Tarlov cysts, meaning they have cysts that do not cause them pain or other issues. About 1 in 100 of people with Tarlov cysts experience symptoms.The condition is diagnosed more often in women than in men.​​​​​​​​​​​​​​​​

Tarlov cysts tend to follow a progressive course. While they typically grow slowly, they are likely to enlarge over time, particularly in the sacral region of the spine. That said, growth is generally gradual enough that multiple MRIs within a single year are not warranted. In cases where there has been extensive bone erosion, patients may develop sacral insufficiency fractures.​​​​​​​​​​​​​​​​

Yes, this is the concern especially in severe symptoms that there may be damage to the nerve that cannot be reversed even with treatment. Untreated nerves are at risk for further injury and possible permanent nerve damage to prolonged nerve compression. This is why it is important to get a diagnosis and treatment plan so you can make the best decision for yourself.

• Increased difficulty in emptying your bladder indicating decreased bladder function. You may need to go to the emergency room or see a urologist if you cannot pee.
• Inability to pass bowel movements
• Suicidal thoughts or self harm.If you’re in the U.S. you can call or text the Suicide & Crisis Lifeline at 988 for free and confidential support at any time.

Schwannomas and neurofibromas can cause symptoms similar to those of Tarlov cysts.

Intrasacral meningocele or meningeal diverticulum are meningeal cysts that can cause the same symptoms as Tarlov cysts but are different because they do not contain a nerve inside. This means they can be removed by a neurosurgeon. If these cysts have a tethered cord then the neurosurgeon can address that too.

Certain physical activities may directly irritate the affected nerves and temporarily worsen your symptoms. Once the nerves settle down, symptoms will often subside.​​​​​​​​​​​​​​​​

Everyone experiences this journey and diagnosis differently. The ability to work and live normally depends on a number of factors including the size, number, and location of your cyst(s), as well as how badly your symptoms affect daily life. Many people experience relief from symptoms through pain management or non-surgical procedures. And, ultimately, many people choose to pursue surgical treatment.

For people who pursue surgery, many eventually go on to live a normal life and many others are able to do most things they want to do but are careful to not push activities too hard or aggressively. If you decide to have surgery, the ability to work and live normally following your surgery depends on how closely you adhere to post-treatment directions and most importantly, how your nerves are able to heal and respond.

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In the United States, you must demonstrate through detailed medical documentation that your symptoms prevent you from performing any “substantial gainful activity” (essentially, working for an income). As the process is not straightforward, TCDF strongly encourages anyone pursuing a disability claim to work with a qualified Social Security disability attorney. For the symptoms and functional limitations most relevant to a TCD disability claim, what physicians need to document and how, and the points in the process where TCD patients are most likely to encounter difficulty, see our Disability page.

Most doctors are not well informed about Tarlov cysts. They may not have been exposed to Tarlov cyst disease in medical school or have very limited exposure to patients with Tarlov cyst disease in training. If you want to further educate your doctor, see our resource.

The gold standard for viewing or identifying Tarlov cysts is magnetic resonance imaging, or an MRI. For more details, see our Diagnosis page.

The diagnostic code (ICD-10 code) for Tarlov cysts is G96.191. Your provider may also use diagnostic code G55, the code for “nerve root and plexus compression in disease classified elsewhere.”

Our Treatment section covers three different approaches to Tarlov cysts: pain management, surgery, and non-surgical procedures.

First the surgeon performs a sacral laminectomy in which they remove the bone covering the cyst area. Then, the surgeon removes the cerebral spinal fluid from the cysts, preserving the nerve and decreasing the pressure on the nerves by the cysts.

The surgery is performed with the high magnification of a microscope or similar exoscope (high-definition, 3D camera system to project magnified, high resolution, real-time images onto large monitors for the surgical team) and continuous intraoperative nerve monitoring to give the surgeon feedback on the tolerance of the nerves to manipulation.

This is a discussion for you and your healthcare professionals. You may choose to monitor your symptoms if they are tolerable and your quality of life is still high. Generally, surgery is offered when more conservative treatments have failed.

Surgery may be the only option when other treatments have not worked, neurological symptoms become severe, or bone is wearing away.

Symptoms like extreme pain and severe bladder or bowel or sexual dysfunction are signs that nerve injury is occurring. If you are offered surgery and decide not to proceed, your symptoms may worsen and the untreated compressed nerves could become damaged.

In general the risks for this type of surgery include infection, bleeding, anesthesia reactions, nerve injury, cerebral spinal fluid leak, bowel, bladder, or sexual dysfunction, and worsening of symptoms or minimal symptom improvement.

We are beginning to see data with longer-term outcomes of two years that reflect sustained improvement of symptoms with surgical treatment. The most current literature reflects improvements with surgical treatment and the highest rate of success as it is a definitive treatment. The specific success rates and risks should be discussed with your neurosurgeon.

To learn about conservative treatment options, see our pages on Pain Management and Non-Surgical Procedures.

We have a Letter to Friends and Family you can use. Communication is important, because this diagnosis is not easily treated or resolved, and it affects all those who are close to you. You will need the support and understanding of family and friends to help you cope with living with chronic pain and other changes that you may note are taking place in your body.