Non-conventional treatments sought by patients after surgery for intramedullary spinal cord tumors

Despite modern microsurgical techniques and interdisciplinary treatment options, intramedullary spinal cord tumors often lead to profound neurological deficits. Some patients may search for non-scientific or unconventional therapeutic options to treat the symptoms induced by the tumor itself or arising from treatment. The extent of non-scientific therapy use, the rationale behind it, and costs of these forms of therapy are unknown.

A questionnaire consisting of 20 questions was sent to 60 patients of a single neurosurgical center who had undergone surgery for an intramedullary spinal cord tumor. A retrospective study was carried out based on this data. Histological findings ranged from ependymoma (52.9%), hemangioblastoma (17.6%), cavernoma (14.7%), astrocytoma (8.8%), oligodendroglioma (2.9%) to ganglioglioma (2.9%). Non-scientific therapy was defined as a method not used in routine clinical practice for the treatment of symptoms induced by intramedullary spinal cord tumors.

A total of 38 questionnaires was returned. About 55.3% of the patients claimed to use non-scientific therapies. No significant difference between histological types and the percentage of alternative therapy use was detected. There was a gender difference. One third (non user group) to one fourth (user group) did not feel adequately informed about their disease. The monthly costs for non-scientific therapies ranged from 50 to 500 Euros. The main motive for the use of non-scientific therapies was the wish to try everything possible.

In the daily clinical routine, patients' use of non-scientific therapies may be largely overlooked and underestimated. Neurooncologists should be aware of this phenomenon and encourage an open but critical dialogue with their patients.