A nightmare begins

A slice of the contrast T1, containing the mass like enhancing lesions in the cerebellum.

On Monday the 20th of February 2017 a research MRI scan was made of my brain. I still felt a bit sickish but was feeling much better, and I could do the tests, and I was fine in the MRI scanner with my nose pointed to the ceiling. This position made me very dizzy on the days that I was feeling sick. I expected to see new MS lesions on the scans, probably aggravated by the flu, therefore I also asked whether a radiologist could look at the images, and my neurologist would call me back on Wednesday to discuss the new scans.

Not on Wednesday, but on Tuesday morning my neurologist called. She told me that they wanted to make new MRI scans with a clinical protocol as soon as possible. They found something in my cerebellum that appeared ‘space occupying.’ MS lesions, in general, do not occupy any space, they are inflammations. Tumors do, they are new cells… A stressful time began. I arranged daycare for Nils and Thomas (Tuesday is my day with the kids), called Adrienne (my wife) and took the train to VUmc.

I arrived at in the hospital around a 12.30h; I was ‘checked-in’ in section 2B, the neurology ward. My MRI had to be moved in between the regular MRI-scans that were planned for the day. The scans were made around 15h. The rest of the afternoon was waiting for the results of the scans. I assumed that it was just MS related and that the research scans from yesterday were inconclusive since they were made without a contrast agent and with a research protocol.

The amazing dinner I was eating when the neurologists came with the news.

During the evening hospital dinner, two neurologists came in, they notified a nurse to come along, told us to cover up the dinner and follow them to a quiet room. Adrienne and I were floored about what the neurologist told us. The other neurologist seemed to be close to crying and the nurse was silent and sad. He told us that there were multiple lesions visible in my brain that appeared to be tumors. With the biggest one in the cerebellum. According to the neurologist, this lesion was centimeters big. They needed to find out what it was exactly, what kind of tumors these were, (they were thinking about lymphoma, but without any further examinations they didn’t want to speculate). Just as us the neurologists were baffled. The chance for a brain tumor is incredibly small, especially at my age, and the medication I am using is not known to increase these odds.

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