Diagnosing Tarlov Cyst Disease

Your healthcare professional may suspect you have Tarlov cysts based on your symptoms and neurological evaluation. To confirm the diagnosis, they will run some tests.

Magnetic resonance imaging (MRI)

The gold standard for viewing or identifying Tarlov cysts is magnetic resonance imaging, or an MRI. This is a test that uses magnets, radio waves, and a computer to create detailed pictures of the inside of your body, especially of soft tissues such as your spinal nerves.

Tarlov cysts typically occur in the sacral region of the spine, so it is important that the MRI order include the sacral region. The best specifications for an MRI order are “Non contrast MRI of the sacrum with T2 weighted images of sagittal and axial views of the entire sacrum”.

It is possible to have additional Tarlov cysts in other areas of the spine, which may or may not be causing symptoms. If you are concerned about Tarlov cysts elsewhere, additional MRI imaging can be useful — both to establish a baseline and to confirm that your existing imaging was thoroughly read and documented.

For best image quality, the MRI should be performed without contrast dye in a closed MRI unit. If there is a concern about a mass or tumor or previous history of a mass or tumor, then the MRI should be performed with contrast.

Are there other tests my doctor might request?

Your healthcare professional might order tests to determine nerve function, bone erosion, and bladder function. They may also order tests to rule out other spinal issues that might be the cause of your symptoms instead of or in addition to Tarlov cysts, such as such as slipped/ruptured/herniated disc, degenerative disc disease, scoliosis or curvature of the spine, and osteoporosis.

Some of these tests are diagnostic nerve root block, discogram, bone scan, computed tomography (CT), urodynamics, electromyogram (EMG), and nerve conduction velocity (NCV) studies.

How to advocate for yourself

  • Request to have the images re-read by the radiologist if Tarlov cysts are not mentioned on your radiology report. Because of misinformation and lack of understanding in the medical community, it is not unusual for the MRI report to not mention Tarlov cysts or to state your Tarlov cysts are of no clinical significance may be inaccurate.
  • Save copies of the images and radiologist reports. This is important for future comparisons, after treatment, to determine decrease or increase in size of the cysts, as well as the presence of new cyst formation.
  • Keep a detailed list of your symptoms with exact locations of these symptoms. For example, know exactly where your leg pain is (“my pain is in the back of the left upper and lower leg and bottom of the foot”).

Could my symptoms be caused by something other than Tarlov cysts?

Schwannomas and neurofibromas can cause symptoms similar to those of Tarlov cysts.

Intrasacral meningocele (also sometimes called meningeal diverticulum) are another type of meningeal cyst that can cause the same symptoms as Tarlov cysts. But unlike a Tarlov cyst, these cysts do not contain any nerves inside of them, which means they can be removed surgically by a neurosurgeon. If these cysts have a tethered cord – where a band of tissue from the end of the spinal cord extends to the opening of the cyst – then the neurosurgeon can address that too. About 7 out of 25 people (28%) with an intrasacral meningocele type cyst have tethered spinal cord.

Diagnostic codes

​​​​​​​​​​​​The diagnostic code (ICD-10 code) for Tarlov cysts is G96.191. Your provider may also use diagnostic code G55, the code for “nerve root and plexus compression in disease classified elsewhere.”