Tarlov Cyst Society of Australia & New Zealand
Tarlov Cyst Society of Australia & New Zealand (TCSANZ) , we are is committed to progressing awareness and understanding about the rare neurological condition Tarlov cyst disease (TCD), and providing support to its members and the broader community – people who suffer this rare disease and their family and friends.
The TCSANZ provides peer to peer advice and support, and not medical advice. The TCSANZ progresses the awareness and understanding about TCD, and the facilitation of information, by posting medical research papers on its Facebook pages.
Information posted on this website is of a general nature and is not intended to replace the advice of a qualified health practitioner. Please speak to and receive medical advice from appropriately qualified health practitioners.
Who We Are
The Tarlov Cyst Society of Australia & New Zealand (TCSANZ) is a support group for Tarlov cyst disease (TCD) sufferers and their family and friends. The TCSANZ is committed to progressing awareness and understanding about the rare neurological condition TCD and providing support to its members and the broader community.
Through our ‘Closed’ (private support) Facebook page the TCSANZ supports people in Australia, New Zealand, the Pacific Islands and nearby regions, including Asia. Through our ‘Open’ (public) Facebook page the TCSANZ supports everyone regardless of geographic location. People in the Australia/ New Zealand region are very welcome to join the ‘Closed’ Facebook page via the link on this website; there is no cost to become a member. Membership:
1) allows a member to participate in members’ discussions;
2) facilitates connections between members; and
3) enables access to an extensive array of information about the condition TCD.
The TCSANZ is affiliated under the leadership of the International Tarlov Cyst Disease Society (ITCDS). We are the only TCD support group in the Australia/New Zealand region affiliated under the leadership of ITCS. There are similar support groups with 'Closed'/ private support Facebook pages throughout the world also affiliated under the leadership of the ITCDS. The TCSANZ encourages people outside the Australia/New Zealand region to join the Tarlov Cyst Society closest to the region in which they reside. This has many advantages, including, for example, in support group discussions members are able to obtain the names and details of TCD aware and sensitive health practitioners nearby, which they may wish to access, in addition to other local support information. Details of Tarlov Cyst Societies in addition to the TCSANZ can be found on our ‘Open’ Facebook page.
The TCSANZ encourages people who do not live in the Australia/ New Zealand region, and therefore do not qualify to join the TCSANZ’s ‘Closed’ Facebook page, to ‘Like’, ‘Follow’ and ‘Comment’ on the TCSANZ’s ‘Open’ Facebook page as the TCSANZ regularly posts informed and up-to-date information about TCD and related matters on its ‘Open’ Facebook page to assist and support everyone regardless of geographic location.
A Tarlov cyst, also called perineural cyst, is a cerebrospinal fluid (CSF) filled dilatation of a spinal nerve root sheath. Tarlov cysts are very common; the majority are asymptomatic (i.e. produce no symptoms or clinical signs). They can occur anywhere along the vertebral column (e.g. cervical, thoracic, lumbar and sacral regions), but are most common in the lumbar and sacral regions. Some Tarlov cysts can cause spinal nerve root damage, including due the Tarlov cyst’s compression of the spinal nerve roots, and are therefore symptomatic – a symptomatic Tarlov cyst (STC) – which results in Tarlov cyst disease (TCD). In addition, a STC, particularly a large STC or a cluster of small STCs, can cause significant scalloping and remodelling of the neuroskeleton (i.e. the skeleton/ bone that surrounds and protects the nervous system such as vertebrae) in the region of the STC due to its pressure on the neuroskeleton. TCD is a rare condition; in its most severe form it is a very debilitating, degenerative neurological condition.
TCD is, as are many neurological conditions, very difficult to diagnose, manage and treat. This is due in part to the limited knowledge and awareness about the condition, and because many of the symptoms and clinical signs mimic other disorders. Many health practitioners would not consider the possibility of TCD. It is therefore best to consult a health practitioner with experience in diagnosing, treating and managing this condition.
Tarlov cysts may be discovered when a patient with back pain, sciatica or other symptoms has a magnetic resonance imaging (MRI) performed. Often Tarlov cysts are noted as incidental findings of no clinical significance and there is no further exploration undertaken. However, an MRI scan is often merely the beginning of the diagnostic process, including assisting in differentiating between conditions that share similar symptoms and clinical signs with TCD. A MRI scan may detect the presence of a Tarlov cyst; however other diagnostic tests and procedures may be required to determine whether it is symptomatic or asymptomatic. If a Tarlov cyst is detected via a MRI scan or other imaging, and the patient is experiencing symptoms and clinical signs that could be attributable to spinal nerve root damage related to the spinal nerves at the level of the vertebral column the Tarlov cyst exists, the health practitioners the patient is consulting should work through a differential diagnosis. The differential diagnosis should include TCD in the mix with other pathophysiological abnormalities indicated in the patient’s test results to ascertain whether the Tarlov cyst is causing spinal nerve root damage or not (i.e. is symptomatic or asymptomatic), and/ or whether the symptoms and clinical signs are attributable to other pathophysiological abnormalities indicated in the patient’s test results. A differential diagnosis is the process of differentiating between two or more conditions which share similar clinical signs and symptoms. A diagnosis (singular cause) or diagnoses (multiple causes) is reached by a process of elimination (i.e. diagnosis of exclusion/ per exclusionem). The diagnostic process may be complicated if the patient has other conditions that affect the same region of the body.
Diagnostic Tests –
Because TCD is rare and is so misunderstood, many health practitioners are unaware of key diagnostic tests and procedures to determine the symptomatic or asymptomatic nature of a Tarlov cyst, and the patient may be referred and on-referred. Electromyography (EMG), CT guided Tarlov cyst partial aspiration, myelogram and other diagnostic tests are generally undertaken to determine the symptomatic or asymptomatic nature of a Tarlov cyst, particularly before proceeding with high risk surgery.
EMG, generally undertaken by a highly qualified and skilled neurophysiologist, enables the clinician to detect signs that cannot be confirmed by neurological examination alone, including physical examination and MRI imaging. EMG is most commonly used to investigate weakness and helps distinguish neurogenic diseases from myopathic diseases (i.e. nerve from muscle causes).
CT guided partial aspiration (i.e. partial decompression) of a Tarlov cyst is undertaken, usually by a neuroradiologist, to remove fluid from the cyst to decompress it thereby temporarily relieving its pressure on impacted spinal nerve roots to enable the observation of any consequent benefits, and pathologically determine the nature of the aspirate (i.e. ascertain whether it contains cerebrospinal fluid (CSF)). The patient is encouraged to keep a detailed diary to document any changes to their symptoms and clinical signs and their associated management – if symptoms and clinical signs improve post decompression it may suggest that the Tarlov cyst is symptomatic. CT guided partial aspiration of a Tarlov cyst is a diagnostic test rather than a therapeutic procedure as the cyst will refill with CSF and again compress the affected spinal nerve roots.
A myelogram, radiographic examination that uses a contrast medium to detect pathology of the spinal cord, may be undertaken to identify the pathology of the cyst and other areas of the spine, including the location and size of the communication (i.e. flow) of CSF between the thecal sac/ dural sac, the membranous sheath that surrounds the spinal cord and cadua equina that contains CSF, and the Tarlov cyst. A contrast agent is injected to opacify structures and make them radiopaque (i.e. obvious to radiology imaging). Often a CT guided partial aspiration and myelogram are undertaken concurrently.
Other tests and procedures that may be undertaken in relation to Tarlov cyst disease diagnosis where the Tarlov cyst is located in the lumbosacral region of the spine and where the patient experiences obvious bowels and bladder dysfunction as a consequence of suspected spinal nerve root compression/ damage, include anorectal ultrasound, anorectal manometry, defaecating proctogram and urodynamic study. If the Tarlov cyst occurs in other regions of the spine (e.g. cervical, thoracic and lumbar) other tests and procedures specific to the affected nerves may be undertaken.
The TCSANZ does not advocate that TCD sufferers undergo surgery or not undergo surgery; this is a very personal decision and one that needs to be informed by appropriately qualified and skilled health practitioners – each case/ individual is very different.
Symptoms and Clinical Signs
Symptoms and clinical signs depend on which spinal nerve roots (e.g. cervical, thoracic, lumbar or sacral) are compressed/ damaged by the Tarlov cyst. The following is an overview of symptoms and clinical signs only and is not a detailed list.
Spinal nerve root damage, including that caused by a symptomatic Tarlov cyst, may result in abnormal sensations (e.g. burning, tingling, pins-and-needles and numbness) in specific areas on the skin that correlate with dermatome patterns (i.e. an area of skin that is mainly innervated (i.e. supplied) by a single spinal nerve).
Spinal nerve root damage may result in the dysfunction of specific muscles that contribute to specific organs’ functions and mobility, which correlate with a specific affected myotome (s) (i.e. a group of muscles that is innervated by a single spinal nerve).
Spinal nerve root damage may cause radiculopathy, nerve pain that radiates from the damaged nerve to parts of the body that are supplied by the affected nerve (s) and other symptoms (e.g. muscle weakness and/ or muscle tension/ over contraction) associated with the affected nerve (s). Typically a Tarlov cyst disease sufferer will experience severe pain at the site of the symptomatic Tarlov cyst.
Useful research papers
Nerve Conduction Studies
High prevalence of cervical perineurial cysts on cervical spine MRI-Case Series
Why the Zebra?
You may wonder why the Tarlov Cyst Society of Australia & New Zealand, and other organisations that represent rare diseases awareness and understanding, adopt the zebra as part of their logo.
In the medical world a zebra is slang for a rare or unusual disease. Doctors are trained to think of horses when they hear hoofbeats, the sound of a hoof striking the ground, rather than another member of the horse family, such as a zebra that is rare or unusual. This encourages the student doctor not to confuse common diseases with rare and unusual diseases – a practice many carry throughout their medical career. Unfortunately the consequence is that rare and unusual diseases, such as TCD, often go undiagnosed or are misdiagnosed.
Too often TCD sufferers are dismissed as having a nonorganic disease as opposed to an organic disease – they are dismissed as merely suffering a depressive disorder. Organic diseases are characterised by physical and biochemical signs; signs that can be objectively tested. Non-organic diseases, such as depression, are characterised by symptoms of distress such as pain, anxiety or deemed ‘undesirable’ behaviours – non-physical and non-biochemical signs; signs that can’t be objectively tested. The depressive symptomology may be a consequence of suffering TCD and associated chronic pain and other symptoms and clinical signs, and the despair the sufferer feels for not being believed they suffer an organic disease – despair because they and the disease they suffer are not validated. There is a strong correlation between chronic pain and depressive symptomology.