Meningioma: Anyone else? I'm frightened

Good advice from Jason. All of this is stressful and overwhelming but finding the right doctor is the most important thing even if it takes a longer time to establish, ultimately, the best way to proceed. (That would be active surveillance, radiation, surgery, or a combination of the former two.)

Sorry, I should have added my neurosurgeon did Gamma knife procedure since it was close to nerve and I have had no problems at all for past 1 1/2 years.

I have one posted by my left optic nerve as well, I am horrified of surgery but it sounds as if it’s the only option

What other options were you provided besides surgery? If you don’t mind me asking where was your tumor located?

Yes, it is very stressful. I was in the hospital for another condition and a neurologist I didn’t know came in to say they saw a large brain tumor by my optic nerve and needed to see a neurosurgeon. When he left I burst into tears. I hadn’t cried in years but it was overwhelming. The neurosurgeon is key in handling it. I used the one recommended by the neurologist, part of the same group. If you can find a neurology group associated with a good hospital it could help you get started.

I was referred to the first neurosurgeon by my PCP. I did not like our interaction or lack of information he was willing to provide. Like, how many of these do you do? He brushed passed it and started talking setting up surgery. I set up the next to on my own, with UPMC Pittsburgh and Mayo Rochester. Both were excellent. Hope this helps

All of us on this forum were new to a meningioma diagnosis at one time. It is stressful to hear you have any kind of a growth taking up real estate in your brain. Sorry you have to go through this experience. The key, for me, (reducing my stress) was to find a neurosurgeon I had the utmost trust in to manage my care.

Thank you and I appreciate your comment. Wandering if I have to get a consult from the neurologist first or can I look up a neurosurgeon with MRI results in hand? Sorry, I’m so new to this. I thought I was the healthiest person I knew. Omg, this is so stressful.

Hopefully the neurologist will be johnny-on-the-spot about referring you to a neurosurgeon. A neurologist specializes in treating disorders of the brain like epilepsy, Parkinson's, etc. A meningioma ( a tumor that is benign 97% of the time) is the specialty of a neurosurgeon. I wouldn't trust anyone else's opinion with regard to waiting to see if it grows, radiating it, or removing it. There are lots of good posts about meningiomas on this forum. Click on some of the back pages of posts.

It is definitely a punch to the gut when you hear you have a brain tumor. Make sure you get more than one opinion, including from neurosurgeons if they decide surgery is important. I’m so glad I got more opinions after the first one!