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 commonly are found at the base of the spine (the sacrum). They affect the nerve roots in the sacrum, whereas the spinal nerve roots are embedded within the cyst wall or within the cyst cavity.^[1]^[2] A person can have one Tarlov cyst or multiple cysts, and symptoms may or may not be present, depending on the size and location of the cyst(s).^[3] In general, the larger the cyst is, the more likely it is to cause symptoms.^[1]^[3] In some cases, a cyst begins to cause symptoms following trauma or in response to a buildup of cerebrospinal fluid (CSF).^[2] Examples of symptoms caused by a Tarlov cyst include pain when moving or changing position (especially in the buttocks or lower back), muscle weakness, headaches, impaired reflexes, numbness or other sensation abnormalities, loss of bladder or bowel control, sexual dysfunction (impotence), or other neurologic problems.^[1]^[3] Symptoms generally occur in the area of the body served by the involved nerves.^[3]

Diagnosing a Tarlov cyst can take a long time because there is limited awareness among primary care physicians and symptoms are similar to those of many other disorders or health problems. In some cases, a person may be misdiagnosed as having herniated discs, arachnoiditis, or gynecological conditions (in females). The diagnosis may ultimately be made following an MRI and/or CT myelogram due to pain, or sometimes following tests performed by a urologist due to bladder problems.^[1] The exact cause of Tarlov cysts is not currently known.^[1]^[3]

Treatment depends on the symptoms and size of the cyst(s). Many methods have been described with variable results.^[4] Non-surgical treatment options may include pain management, lumbar drainage of CSF, CT scan-guided cyst aspiration, and removing the CSF from inside the cyst and injecting the space with a fibrin sealant. However, these options do not prevent symptoms from returning. Surgical options may include opening and draining the cyst before filling it with fibrin sealant, laminectomy, removing the cyst or nerve roots, and other neurosurgical techniques.^[1]

The long-term outlook (prognosis) varies from person to person depending on the severity of symptoms and effectiveness of treatment. Following surgery, some people have considerable relief of pain, while others have no change in symptoms. In some cases, surgery causes different symptoms or worsens existing symptoms.^[1] Residual symptoms following treatment may require continued pain management and changes in lifestyle. If left untreated, a Tarlov cyst can cause permanent neurological damage.^[2]

Last updated: 8/9/2018

Symptoms Symptoms

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.

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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 Erectile dysfunction [ 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: 11/1/2018

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

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.^[2]^[3]^[5]

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.^[5]

A recent review analyzed the different surgical options, including the following:^[4]

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.^[4]

Last updated: 5/25/2016

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.

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

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 or pages 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.

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.

News & Events News & Events

News

The NIH Undiagnosed Diseases Network Expands
September 26, 2018

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

Tarlov cyst. American Association of Neurological Surgeons. 2018; https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Tarlov-Cyst.
Tarlov Cysts Information Page. National Institutes of Neurological Disorders and Stroke (NINDS). July 2, 2018; https://www.ninds.nih.gov/Disorders/All-Disorders/Tarlov-Cysts-Information-Page.
Weinstein PR. Tarlov Cysts. National Organization for Rare Disorders (NORD). 2015; http://rarediseases.org/rare-diseases/tarlov-cysts/.
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.
Tarlov Cyst Information. Tarlov Cyst Disease Foundation. http://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx.