TARLOV CYSTS – The Unacknowledged Disease

The story of Moana

Samantha, Michelle and Moana have just returned home from Cyprus where they and nine other patients from across the globe received life-altering surgery for Tarlov Cysts (TC’s) with an American neurosurgeon.

“Tarlov cysts are fluid-filled sacs that affect the nerve roots of the spine, especially near the base of the spine.”

“Chronic pain is a common with symptomatic Tarlov cysts. Pain from lumbo-sacral cysts may affect the lower back, especially below the waist, and spread to the buttocks and legs. Pain may be worsened by walking. Symptoms may become progressively worse.”

“Because Tarlov cysts can affect the nerves, symptoms relating to loss of neurological function can also develop including leg weakness, diminished reflexes, loss of sensation on the skin, and changes in bowel or bladder function such as incontinence or painful urination. Some individuals may have difficulty empting the bladder and constipation has also been reported. Changes in sexual function such as impotence can also occur.”

It is common for radiologists to report “incidental finding” on an MRI showing TC’s or to completely leave them off the report altogether. Unfortunately this is due to the training radiologists are given where they are generally educated to believe TC’s are always asymptomatic. This ‘old school’ school of thought can lead to long delays in diagnosis causing the patient to go from doctor to doctor seeking help due to the many neurological functions which can be affected depending on the exact location and number of cysts.

Awareness needs to start with educating radiologists and General Practitioners that TCs can be symptomatic and can cause a great deal of pain and neurologic dysfunction. Most GPs are not aware of what a TC is. For those of us who have been lucky enough to follow up an ‘incidental finding’ on an MRI, a lack of awareness in the medical community would question how many have not been so lucky? How many Australians are suffering from chronic leg or lower back pain or bowel and bladder dysfunction and have never been given the correct diagnosis? Or worse, how many have been given the wrong diagnosis followed by inappropriate medical treatment due to the lack of reporting of TCs by radiologists?

Samantha appreciates this can be a difficult disease to diagnose and believes awareness needs to start with GPs and radiologists. After severe health issues commenced in January 2015 Samantha had many appointments with more than fourteen specialists while trying to obtain a diagnosis. Even after obtaining an MRI, which showed the multiple cysts of up to 5 cms each, Samantha had a difficult time finding a neurosurgeon in Australia who would acknowledge the TC’s were the cause of her medical symptoms.

Michelle felt lucky that a radiologist acknowledged her cysts on a CT Scan. The radiologist recommended an MRI that same week which showed six TC’s. Michelles GP had never heard of TC’s. Michelle visited various neurosurgeons in Australia with varying opinions that would not acknowledge the TC’s were the cause of her sacrum erosion, or would no longer operate because of the risk involved, or had only operated on a handful of patients.

Moana had been suffering for 15 months with acute and then chronic sciatica for which she had undergone an operation on a synovial cyst in February 2015. After surgery for the synovial cyst the pain did not cease and she requested a further MRI in November 2015 that reported a TC. An Australian neurosurgeon agreed that this TC was causing the pain and upon review, despite not being mentioned by the radiologist in his initial report, she noted the TC had been present as the same time of the synovial cyst. The neurosurgeon advised Moana the TC was inoperable and recommended strong painkillers. During her recent surgery in Cyprus, Moana had five TCs treated.