Stichting OverdrukSyndroom NL City: Hoofddorp Phone : +31654782636
SOSNL is committed to research into the development and treatment of overpressure in the brain and spinal cord channel & symptomatic Tarlov cysts and is raising awareness of this seriously debilitating condition and wants to contribute to the recognition, information provision and research, resulting in a health gain in the Netherlands. We support clinical and fundamental research that contributes to more knowledge about overpressure syndrome and tarlov cysts with regard to better diagnostics and / or safe, effective treatment.
Cerebrospinal Dysregulation Syndrome is a relatively unknown condition that leads to very severe pain complaints and has a disabling effect. It is caused by excessive pressure in the spinal cord.
The condition is often accompanied by the presence of Tarlov cysts in the nerve roots in the spinal cord. Moreover, overpressure can also occur in the brain nerves. While doctors often assume that these cysts can only lead to pain complaints when they are very large, Belgian research from 2016 has shown that even small Tarlov cysts can lead to severe pains. The diagnosis of overpressure syndrome is often made late, partly due to the fact that the condition is unknown.
A Tarlov cyst is a fluid-filled swelling of a nerve root at the bottom of the spinal cord. But they can also arise higher in the spinal canal. The cysts can lead to persistent complaints in the area of the genitals and anus, or to complaints similar to those of a spinal cord injury. Most common these cysts can lead to a chronic cauda equina syndrome. Tarlov cysts occur in about 5% of the world's population, of which around 1% are symptomatic at the time of discovery. But later in life, the cysts can still become symptomatic.
Because doctors' knowledge is just as rare as these cysts and the Cerebrospinal Dysregulation Syndrome, sosnl is committed to patients in the Netherlands who suffer from this progressive debilitating condition.