I had my ten month MRI in January and it showed no growth. I have also had only one seizure in the past six months. My doctors now think that what I have is a benign tumor called a multinodular vacuolating neuronal tumor (MVNT). Most of these tumors never grow beyond the initial diagnosis. I have spent many hours reading about them and have contacted two experts for additional information. Thus, I have learned quite a bit about these growths.

They are quite interesting from a medical perspective. They were only identified as a separate entity in 2013 because they are extremely rare and look somewhat like a juvenile tumor called a DNET. Generally they are identified incidentally by MRIs people have for other reasons such as a head injury. In most cases they are asymptomatic, though some people, like me, have associated epilepsy. They have a very distinct look on an MRI of numerous bubble-like nodules that are either blended together or somewhat separated. They tend to be small, though mine is on the larger side. In most cases, doctors don’t remove these since they are asymptomatic. They do have a distinctive look under a microscope, but only in some parts of the lesion. That explains why my pathology results were inconclusive.

My initial differential diagnosis of a glioma was due to having a low resolution MRI, which could not see the separation of the nodules in my lesion. The inconclusive biopsy, larger size, and symptoms also made it more difficult for my doctors to be sure of what this was.

The question remains, am I OK for the long term? Honestly, I don’t think I will ever know. I am spending a lot more time trying to lead a healthy life, as well as focusing on reducing stress and maximizing meaningful work and time with my family.

I’m feeling better about everything. I have learned a great deal, and I’m trying to give back as much as possible. If you know anyone with cancer or epilepsy, send them my way. I’m happy to help in any way that I can.