Hi I’m sorry for what your going through I know how difficult it is. I was diagnosed in 2017 it was an incidental finding so of course shocking. Went to 3 different neurosurgeons and radiation oncologists. Most recommended a craniotomy. I said I wanted to wait and watch. Mine is also attached to my optic nerve on right side though. I really had no side effects but I did always suffer from migraines and headaches since childhood so who knows? So in 2018 I started having eye problems and getting vision issues. Neurosurgeon said it’s time to do craniotomy to save my vision. So I did it and they couldn’t remove entire tumor due to location, they got about 80% out. I was told it was the size of a marble.

The recovery wasn’t as bad as I thought given that I had brain surgery. I was able to sit up and slowly walk the room. I was kept in hospital for 6 days which is longer than most. I had some issues with my right eye not opening and vision in that eye was distorted.

It’s procedure to put you on anti seizure meds, antibiotics, steroids for a while so that messed me up a bit with my stomach and just feeling weird. I had a therapist who came to my hime and a nurse for a few weeks and eventually I was able to do most things normally.

👍 I have brain vasculitis and I'm trying to find out as much information about it as possible

What are the symptoms

Is this a rare condition

Well I hit seizures with this condition

My brain back to lightest is making me have stroke like symptoms headaches pain in my body and blurred vision

Here is a follow up from 1 month ago. I saw amazing neurosurgeon-surgeon at MDAnderson in Houston. I had 5 proton radiation treatments. I will have neuro ophthalmologist appointment for further sight tests in 2 weeks; I have seen a neurologist for tests on forgetfulness/short term memory episodes. All will give me an update/overview in June. This is following a craniotomy 6 years ago in a different hospital that should have been avoided. Do everything you can to see the most EXPERIENCED neuro-surgeons in your particular problem. It makes a world of difference.