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 are usually found at the bottom of the spine (the sacrum). They grow in the roots of the nerves that grow out of the spinal cord. Most of the time, Tarlov cysts don't cause symptoms. When symptoms occur, they may include pain in the lower back, buttocks, or stomach. Other symptoms may include muscle weakness, numbness, loss of bladder or bowel control, or sexual dysfunction. Without treatment, Tarlov cysts may cause permanent nerve damage. The cause of Tarlov cysts is unknown. They may occur because of a buildup of cerebral spinal fluid (CSF) that occurs after trauma, surgery, or a small abnormality in spine development. Diagnosis of a Tarlov cyst is made based on the symptoms and through imaging studies such as an MRI and/or CT myelogram. Treatment depends on the symptoms and size of the cyst(s). There are both surgical and non-surgical treatment options.^[1]^[2]^[3]

Last updated: 8/26/2020

Symptoms Symptoms

The following list includes the most common signs and symptoms in people with Tarlov cysts. These symptoms may be different from person to person. Some people may have more symptoms than others and symptoms can range from mild to severe. This list does not include every symptom or feature that has been described with this condition.

Most Tarlov cysts do not cause symptoms. When symptoms do occur, they may include:^[2]^[3]^[4]

Lower back or buttocks pain
Stomach or pelvic pain
Changes in sensation like numbness and weakness (sciatica)
Bowel and bladder control problems
Impotence (sexual dysfunction)

People may have more than one Tarlov cyst. Overtime, cysts may get bigger. In general, larger cysts have been associated with more symptoms. Without treatment, over time, Tarlov cysts can cause permanent nerve damage.

Last updated: 8/26/2020

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 13 |

Medical Terms	Other Names	Learn More: HPO ID
80%-99% of people have these symptoms
Abnormal sacrum morphology		0005107
Neoplasm of the nervous system	Tumor of the nervous system	0004375
30%-79% of people have these symptoms
Abdominal pain	Pain in stomach Stomach pain [ more ]	0002027
Headache	Headaches	0002315
Osteolysis	Breakdown of bone	0002797
Paresthesia	Pins and needles feeling Tingling [ more ]	0003401
5%-29% of people have these symptoms
Areflexia	Absent tendon reflexes	0001284
Bowel incontinence	Loss of bowel control	0002607
Impaired tactile sensation	Impaired touch sensation	0010830
Impotence	Difficulty getting a full erection Difficulty getting an erection [ more ]	0000802
Muscle weakness	Muscular weakness	0001324
Subcutaneous nodule	Firm lump under the skin Growth of abnormal tissue under the skin [ more ]	0001482
Urinary bladder sphincter dysfunction		0002839

Showing of 13 |

Do you have more information about symptoms of this disease? We want to hear from you.

Last updated: 9/1/2020

Cause Cause

The exact cause of Tarlov cysts in unknown. It may be due to an abnormal buildup of cerebral spinal fluid (CSF) around the spine due to trauma, surgery, or a difference in spine development that occurred before birth.^[2]^[3]

Last updated: 8/26/2020

Diagnosis Diagnosis

Tarlov cysts are diagnosed based on the symptoms, clinical exam, and imaging studies such as an ultrasound, MRI, CT scan or myelography. Other more common conditions may need to be excluded before a diagnosis of Tarlov cysts can be made.^[2]^[4]

Last updated: 8/26/2020

Treatment Treatment

There is no standard treatment for Tarlov cysts. Treament options may depend on the location and size of the cyst. Some options include surgery to remove the cyst, draining and sealing the cyst, and rest. Medications may help with the pain.^[5]^[6]

Specialists involved in the care of someone with a Tarlov cyst include:^[1]

Neurosurgeon
Interventional neuroradiologist
Pain management specialist
Urologist

Last updated: 8/26/2020

Statistics Statistics

It is unknown exactly how many people have Tarlov cysts because they are difficult to diagnose. It has been estimated that Tarlov cysts affect 4.6% of people with lower back pain and about 1-5% of the general population.^[2]^[3]

Last updated: 8/26/2020

Do you have updated information on this disease? We want to hear from you.

Find a Specialist Find a Specialist

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

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

Related Diseases Related Diseases

Related diseases are conditions that have similar signs and symptoms. A health care provider may consider these conditions in the table below when making a diagnosis. Please note that the table may not include all the possible conditions related to this disease.

Conditions with similar signs and symptoms from Orphanet
The main differential diagnoses are meningeal diverticula and long arachnoid prolongations, which can be distinguished by rapid filling on myelography compared to the delayed filling of perineural cysts. Differential diagnoses also include herniated lumbar discs, arachnoiditis and, in females, gynecological conditions. Visit the Orphanet disease page for more information.

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.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s 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: +1-865-577-4945
E-mail: https://www.tarlovcystfoundation.org/contact/
Website: https://www.tarlovcystfoundation.org/

Social Networking Websites

Visit the following Facebook groups related to Tarlov cysts:
Tarlov Cyst Society
Tarlov Cyst Society of America

Do you know of an organization? We want to hear from you.

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 American Association of Neurological Surgeons (AANS) has an information page about Tarlov cysts. The AANS is a scientific and educational association dedicated to advancing the specialty of neurological surgery.
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.

News & Events News & Events

News

Rare Diseases Are Not Rare - Gallery of Creative Work Raises Awareness of Rare Diseases
September 1, 2020
NIH-Supported Research Survey to Examine Impact of COVID-19 on Rare Diseases Community
May 22, 2020
NCATS Translational Approach Addresses COVID-19
May 21, 2020

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.

Have a question? Contact a GARD Information Specialist.

References References

Weinstein PR. Tarlov Cysts. National Organization for Rare Disorders (NORD). 2015; http://rarediseases.org/rare-diseases/tarlov-cysts/.
Elkins N, Hunt J, Scott KM. Neurogenic Pelvic Pain. Phys Med Rehabil Clin N Am. 2017; 28(3):551-569. https://pubmed.ncbi.nlm.nih.gov/28676364.
Wang B, Pu F, Wu Q, Zhang Z, Shao Z. Presacral Tarlov Cyst as an Unusual Cause of Abdominal Pain: New Case and Literature Review. World Neurosurg. 2018; 110:79-84. https://pubmed.ncbi.nlm.nih.gov/29102753.
Andrieux C, Poglia P, Laudato P. Tarlov Cyst: A diagnostic of exclusion. Int J Surg Case Rep. 2017; 39:25-28. https://pubmed.ncbi.nlm.nih.gov/28787671.
Dowsett LE, Clement F, Coward S, et al. Effectiveness of Surgical Treatment for Tarlov Cysts: A Systematic Review of Published Literature. Clin Spine Surg. 2018. 2018; 31(9):377-384. https://pubmed.ncbi.nlm.nih.gov/28902742.
Fletcher-Sandersjöö A, Mirza S, Burström G, et al. Management of perineural (Tarlov) cysts: a population-based cohort study and algorithm for the selection of surgical candidates. Acta Neurochir (Wien). 2019; 161(9):1909-1915. https://pubmed.ncbi.nlm.nih.gov/31270612.