Back in the hospital

An inpatient again

When I woke up around 4 am in the night, I noticed some headache. In the morning and during the day this headache didn’t go away, and it got worse when I bent over. A bit worrisome as I also had this kind of a headache before, when the lesions were large and obstructed the flow of CSF (cerebrospinal fluid) in the 4th ventricle. Only now it was by far nowhere close to
When my neurologist called to inform about further diagnosis and a hospital admission on Wednesday, I told her about my mild headache. She told me to come to the first aid of the VUmc, where they would make a CT scan to see if the lesions had grown and the situation could become acute fast.
After being stuck in traffic, I and Adrienne finally made it to the VUmc in Amsterdam after an almost two-hour long drive (we live in ‘s-Hertogenbosch). We arrived at the first aid at 18.30; only at 22.00h, the CT scan was made. Clearly, I wasn’t really urgent.
Luckily the CT scan showed no growth since the MRI of last Friday. Now I am staying overnight at the neurology department, tomorrow the exams continue.

What the neurologist told me they would do: 1.) A lumbar puncture, in the CSF they might see what the lesions are specifically. 2.) A new eye exam, perhaps there would be a lymphoma visible there now. 3.) A talk with the hematologist.
And 4.) what scared me, she told me that in case these exams are inconclusive, they would consider a new brain biopsy. I really can’t understand what they think they can learn from a new biopsy that justifies the risk of this operation. The previous biopsy was not taken wrongly, the samples were very abnormal, but they were not bad samples. A brain biopsy is an invasive procedure with serious risks. Also, it would mean that treatment is further postponed while waiting for the pathology results. I also don’t know what they think they can learn from such a new biopsy that could radically change the treatment. Or whether a treatment that is more radical and perhaps more risky would outweigh the risks of a biopsy. I have a lot of questions for the hematologist tomorrow.

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