Tarlov cysts

Información en español Title

Other Names:

Sacral Tarlov cysts; Sacral perineural cysts; Tarlov cyst; Sacral Tarlov cysts; Sacral perineural cysts; Tarlov cyst; Perineural cysts; Sacral neural cysts See More

Categories:

Nervous System Diseases

Summary Summary

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 don't usually cause symptoms, but when compressing nerve roots, they can cause 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. Asymptomatic tarlov cysts may become symptomatic following shock, trauma, or exertion that causes the buildup of cerebrospinal fluid. Current information indicates that women are more commonly diagnosed with Tarlov cysts.^[1] The reason for this is unknown. Treatment depends on the symptoms and size of the cysts. Many methods have been described for treatment with variable results.^[2]

Last updated: 5/25/2016

Symptoms Symptoms

The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.

Signs and Symptoms	Approximate number of patients (when available)
Abnormality of the sacrum	Very frequent (present in 80%-99% of cases)
Neoplasm of the nervous system	Very frequent (present in 80%-99% of cases)
Headache	Frequent (present in 30%-79% of cases)
Osteolysis	Frequent (present in 30%-79% of cases)
Paresthesia	Frequent (present in 30%-79% of cases)
Areflexia	Occasional (present in 5%-29% of cases)
Bowel incontinence	Occasional (present in 5%-29% of cases)
Impaired tactile sensation	Occasional (present in 5%-29% of cases)
Impotence	Occasional (present in 5%-29% of cases)
Subcutaneous nodule	Occasional (present in 5%-29% of cases)
Urinary bladder sphincter dysfunction	Occasional (present in 5%-29% of cases)

Last updated: 7/1/2017

Treatment Treatment

While there is no standard accepted treatment for individuals with symptomatic Tarlov cysts, many different therapies have been tried.^[3] 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. Non-steroidal anti-inflammatory drugs (NSAIDS) may be prescribed to treat chronic pain and inflammation. 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. Microsurgical removal of the cyst wall 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]^[3]^[4]

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 in some patients.^[4]

A recent review analyzed the different surgical options, including the following:^[2]

Sacral laminectomy with microsurgical cyst fenestration and cyst imbrication
Sacral laminectomy with resection of the sacral cyst
Microsurgical excision of the cyst along with duraplasty or plication of the cyst
Release of the valve and imbrication of the sacral cysts with laminectomies
Total or partial cyst wall removal, arranging the remaining nerve sheath, and repairing the local defect with muscle, gelfoam and fibrin glue
Removing of the cyst and closure of defect by fibrin glue
Microscopic cyst resection and closure of defect by fibrin glue
Microsurgical fenestration from the cyst to the thecal sac
Fenestration of the cyst and closure of the opening by stitches and glue
Cyst remodeling around the root using titanium clips
Cyst excision and occlusion of its neck.

The authors of this review concluded that the best results are obtained with the complete removal of the cyst and closure of the defect by fibrin glue, microscopic cyst resection and closure of the defect by fibrin glue, or cyst removal with closure of its neck.^[2]

Last updated: 5/25/2016

Prognosis Prognosis

In the vast majority of cases, Tarlov cysts never cause symptoms. It has been estimated that as many as 5% of people have Tarlov cysts.^[5] These cysts are often multiple, involving the sacrum and other locations along the spine.^[6] Only a fraction of people with Tarlov cysts develop symptoms.^[5]^[6] These symptoms may present suddenly or gradually. They often fluctuate, for example will worsen with sneezing or sitting (increased pressure).^[5] Less is known about how symptomatic cysts affect people overtime. Much of what we know on this topic comes from individual case reports, and outcomes from these reports vary. As a result, each person with symptomatic cysts should be counseled regarding the likely behavior of their cyst, based on their own MRI results. While predictions can be difficult, MRI's can give clues regarding the behavior of individual cysts.^[5]^[6]

Last updated: 10/13/2015

Do you have updated information on this condition? Let us know.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

The Tarlov Cyst Disease Foundation is conducting a Tarlov Cyst Patient Survey. The Tarlov Cyst Disease Foundation is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis, advocacy for patients, and development of successful treatments and outcomes for symptomatic Tarlov cysts. Click on Tarlov Cyst Patient Survey to learn more about how you can participate in Tarlov cyst research.

General Clinical Trials & Research

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Evaluation and Treatment of Neurosurgical Disorders which may be of interest to you. To find this trial, click on the link above.

Organizations Organizations

Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Tarlov Cyst Disease Foundation
326 Norton Road
Knoxville, TN 37920
Telephone: 865-577-4945
E-mail: http://www.tarlovcystfoundation.org/contact_us0.aspx
Website: http://www.tarlovcystfoundation.org

Do you know of an organization? Send us your suggestions.

Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Healthcare Resources

The Tarlov Cyst Disease Foundation maintains a Find a Doctor resource page to help patients find their nearest Tarlov cyst expert. Click on Find a Doctor to view this resource page.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
The Tarlov Cyst Disease Foundation has an information page on this topic. The Tarlov Cyst Disease Foundation is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis, advocacy for patients, and development of successful treatments and outcomes for symptomatic Tarlov cysts. Click on the link above to view the information page.

In-Depth Information

The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Tarlov cysts. Click on the link to view a sample search on this topic.

Selected Full-Text Journal Articles

Murphy, K. et al. Treatment of 213 Patients with Symptomatic Tarlov Cysts by CT-Guided Percutaneous Injection of Fibrin Sealant. AJNR Am J Neuroradiol. 2015 Sep 24.

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

Years ago my coccyx (tailbone) was surgically removed. Recently, I was found to have a sacral Tarlov cyst. Could the Tarlov cyst have been caused by trauma? Is it possible that the problems with my tailbone and the sacral Tarlov cyst are related? See answer
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? See answer

Have a question? Contact a GARD Information Specialist.

References References

NINDS Tarlov Cysts Information Page. National Institutes of Neurological Disorders and Stroke (NINDS). June 14, 2012; https://www.ninds.nih.gov/Disorders/All-Disorders/Tarlov-Cysts-Information-Page.
Elsawaf A, Awad TE & Fesal SS. Surgical excision of symptomatic sacral perineurial Tarlov cyst: case series and review of the literature. Eur Spine J. May 6, 2016; https://www.ncbi.nlm.nih.gov/pubmed/27154168.
Weinstein PR. Tarlov Cysts. National Organization for Rare Disorders (NORD). 2015; http://rarediseases.org/rare-diseases/tarlov-cysts/.
Tarlov Cyst Information. Tarlov Cyst Disease Foundation. http://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx.
Lucantoni C Than KD, Wang AC, Valdivia-Valdivia JM, Maher CO, La Marca F, and Park P. Tarlov cysts: a controversial lesion of the sacral spine. Neurosurg Focus. 2011 Dec; 31(6):E14. https://www.ncbi.nlm.nih.gov/pubmed/22133181.
Zibis AH, Fyllos AH & Arvanitis DL. Symptomatic cervical perineural (Tarlov) cyst: a case report. Hippokratia. 2015 Jan-Mar; 19(1):76-7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4574593/.