Meningioma: Anyone else? I'm frightened

If Mayo Clinic in AZ, FL or MN is an option for you, here is how to request a second opinion: http://mayocl.in/1mtmR63

@ljm1, did you decide on getting a second opinion? Any update?

Hi Andrea
I know this post is a few months old but I wanted to reply to your inquiry about the Depo about because I haven't really seen that talked about too much here.
I was diagnosed in September of 2024 with a small convexity meningioma. I am on a watch and wait protocol.
I used Depo Provera for about 12 years for endometriosis and I believe that there is a strong possibility it caused my current brain tumor.
Did you use Depo? I'm 56 so I started using it way back in the 90s lol but they are still prescribing it and I have been trying to warn others to be cautious and to at least take breaks from using it. I was never told that it shouldn't be used for years at a time although I did take a few breaks.
I don't know if you are aware that there is pending litigation ( not sure if I'm allowed to mention this) to help women who have been diagnosed with a meningioma after using the birth control shot.
This is the scariest thing I have ever been through, I hope you are doing ok. Sending positive energy your way.

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.