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Diseases

Genetic and Rare Diseases Information Center (GARD)

Other Names for this Disease
  • Perineural cysts
  • Sacral neural cysts
  • Sacral perineural cysts
  • Sacral Tarlov cysts
  • Tarlov cyst
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Your Question

I have been diagnosed with Tarlov cyst disease. Is there a cure for this condition? How is it treated? Are there surgical options? How can I find a doctor who is knowledgeable about Tarlov cysts?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What are Tarlov cysts?

Tarlov cysts are fluid-filled sacs that most often affect nerve roots in the sacrum, the group of bones at the base of the spine. These cysts can compress nerve roots, causing lower back pain, sciatica (shock-like or burning pain in the lower back, buttocks, and down one leg to below the knee), urinary incontinence, headaches, sexual dysfunction, constipation, and some loss of feeling or control of movement in the leg and/or foot. Pressure on the nerves next to the cysts can also cause pain and deterioration of the surrounding bone. Tarlov cysts may become symptomatic following shock, trauma, or exertion that causes the buildup of cerebrospinal fluid. Women are at much higher risk of developing these cysts than are men.[1]
Last updated: 11/14/2011

Is there a cure for Tarlov cysts?

While there is no cure for Tarlov cysts, there are several treatment options which have delivered mixed results in controlling the symptoms of the condition.[1][2]
Last updated: 11/14/2011

How might Tarlov cysts be treated?

Tarlov cysts may be drained and shunted to relieve pressure and pain, but relief is often only temporary and fluid build-up in the cysts will recur. Corticosteroid injections may also temporarily relieve pain. Other drugs may be prescribed to treat chronic pain and depression. Injecting the cysts with fibrin glue (a combination of naturally occurring substances based on the clotting factor in blood) may provide temporary relief of pain. Some scientists believe the herpes simplex virus, which thrives in an alkaline environment, can cause Tarlov cysts to become symptomatic. Making the body less alkaline, through diet or supplements, may lessen symptoms. Microsurgical removal of the cyst may be an option in select individuals who do not respond to conservative treatments and who continue to experience pain or progressive neurological damage.[1]  

Transcutaneous Electrical Nerve Stimulation (TENS) has been proven useful for some in pain management. TENS devices deliver electrical impulses through the skin to the nerves to control pain. Unlike medications and topical ointments, TENS does not have any known side effects, other than skin irritation from the electrodes seen in some patients.[2]
Last updated: 11/14/2011

Are there surgical options for treatment of Tarlov cysts?

There are a small number of physicians in the world who have surgical expertise in the treatment for Tarlov cysts. The short-term and long-term outcome of surgery is improving but variable in individual patients at this time.[2]

Two articles which discuss surgical treatment of Tarlov cysts are linked below.

Tanaka M, Nakahara S, Ito Y, et al. Surgical results of sacral perineural (Tarlov) cysts. Acta Med Okayama. 2006; 60(1):65-70.

Mummaneni PV, Pitts LH, McCormack BM, et al. Microsurgical treatment of symptomatic sacral Tarlov cysts. Neurosurgery. 2000;47(1):74-8; discussion 78-9.
Last updated: 11/14/2011

Who may be involved in the management of a patient with Tarlov cysts?

Neurosurgeons and interventional neuroradiologists may treat individuals with Tarlov cysts. It is important that the treating physician is knowledgeable about the symptomatology of the cysts and the extended ramifications of untreated cysts that are present with no other spinal pathology. Pain management specialists are vital to the treatment of symptomatic Tarlov cysts. Family practice physicians (or other primary health care providers) play a key role in management of symptoms, including bowel and bladder dysfunction. A urologist might be consulted if the cysts are interfering with bladder function (urinary retention, increased frequency of urinary tract infections, or incontinence).[2]
Last updated: 11/14/2011

How can I find a physician who is knowledgeable about Tarlov cysts?

The Tarlov Cysts Disease Foundation has a Physician Finder service which can help you locate a physician who is knowledgeable about Tarlov cysts. Visit the following link to access this service online: 
http://www.tarlovcystfoundation.org/find_a_doctor0.aspx 
Last updated: 1/30/2013

References