Jannes was diagnosed with a primary parenchymal pineal brain tumor in 2010 – a very rare and poorly understood cancer.
Jannes had experienced unexplainex headaches for years and this had been blamed on diet, eye strain, chronic neck tension, incorrect pillow height and poor posture. His journey to the discovery of the brain tumor would be funny if it wasn’t so sad. Jannes started having marital problems due to his erratic behavior in late 2009 – a year after marriage. He was eventually advised to
go for a psychometric test by his marriage counselor, which revealed serious psychiatric instability. His headaches at this point had grown so bad the even standing up and sitting down prompted searing spikes of pain in his head.
He visited 3 neurologists that told him he had no symptoms worthy of needing a brain scan and that the chances of actually having a brain tumor were “practically zero”. He was put on a cocktail of anti-epileptic and anti-migraine medications, which did reduce the pain, but made normal functioning impossible.
He was removed from the drugs and recommended by a family friend to be checked in at Vista Clinic – a mental hospital in Centurion to try bring his odd behavior under control.
Vista Clinic is not a big place, and yet every day Jannes needed guidance to find the canteen, his bedroom, the toilet. He was totally disoriented and confused. The anti-psychotics he was on at the facility also did nothing to curb his violent mood swings and erratic behavior.
His psychiatrist at Vista clinic then suggested he be taken for an MRI scan. Of this experience Jannes remembers nothing.
The MRI revealed a massive tumor in the center of his brain attached to the pineal gland. Due to its size, it was practically crushing his brain.
At the time of discovery, the tumor measured 7,5 x 5,5 x 5,0cm (the size of an orange). It was also blocking one of his brain ventricles, which was causing sever pressure on the brain; a deadly condition known as Hydrocephalous.
Jannes underwent emergency surgery to relieve the pressure on the brain which saved him from certain death.
Two days later, Jannes had two more operations: a VP shunt insertion to regulate the pressure on his brain and a biopsy.
The biopsy revealed the tumor to both malignant and benign. Until this day, the exact proportions of benign vs malignant in the tumor are not known. This rare type of tumor (a PPTID) only affects 1 in every 100,000 cancer patients.
Jannes underwent 32 sessions of radiotherapy to shrink the tumor and 6 months later had an operation to try and remove the it
Because of the difficult position of the tumor and the high levels of risk involved, only 1/4 was removed. The rest of the tumor remains in his head.
Jannes was tremendously supported by his family, friends, colleagues and clients and is eternally grateful for having a strong, loving & supportive wife.
This tumour has since been under careful scrutiny every few months and although still active, Jannes hopes to be rid of it completely one happy day.