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Disease Profile
Tarlov cysts
Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
Unknown
Age of onset
Adult
ICD-10
G54.8
Inheritance
Autosomal dominant A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease.
Autosomal recessive Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype.
X-linked
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
Mitochondrial or multigenic Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Not applicable
Other names (AKA)
Sacral Tarlov cysts; Sacral perineural cysts; Tarlov cyst;
Categories
Nervous System Diseases
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
Symptoms
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.
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.
Medical Terms | Other Names |
Learn More:
HPO ID
|
---|---|---|
80%-99% of people have these symptoms | ||
Abnormal sacrum morphology | 0005107 | |
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 |
Diagnosis
Treatment
Specialists involved in the care of someone with a Tarlov cyst include:[1]
- Neurosurgeon
- Interventional neuroradiologist
- Pain management specialist
Urologist
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.
|
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
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.
References
- Weinstein PR. Tarlov Cysts. National Organization for Rare Disorders (NORD). 2015; https://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.
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