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Oct 11, 2018 Latest post:
Jan 22, 2019
In 2009 Spencer was having bad migraines. There was an MRI done and there was a gray spot on his imaging. They did not know what it was and thought maybe from a fall or injury. Nothing that alarmed us happened. Fast forward to 2018. Spencer was being worked up for Ehlers Danlos Syndrome by a new Dr. she was alarmed that his chart said there was an abnormal MRI and no follow up was done. An MRI was done within a week or two. The spot that was gray on the 2009 MRI has now doubled in size. Without having other imaging done during those years we do not know the growth rate of this tumor. It is non cancerous. However, we do not have a medical term for it as it needs to go to pathology.
We met with a local surgeon and he advised it should come out as we do not know the rate of growth and don’t want to chance it and wait it out. It is on his right side above his ear and close to the skull so it is not imbedded deep into the brain.
This afternoon, his primary care provider called and suggested we go to Children’s Hospital in Madison. She gave us a name of the best neurosurgeon in the area.
We have started the process to head to Madison and will meet the neuro team next Thursday.
We met with school and he is academically set for graduation so we do not need to worry about that!
Recovery is a few days in the ICU and then home. With having the brain recover from surgery it takes a lot out of the body and he can expect to be tired and sluggish for a couple of months.