Meningioma: Anyone else? I'm frightened

I was just diagnosed as well last week and going for my first visit with a neurologist. I am scared out of my mind!

News update! Dr here in California said my tumor is very reachable via an endoscopic procedure and can remove some and biopsy to see if it’s contributing to my immune response in my eyes. Seeing the rest of the team today to discuss.

I have just been diagnosed as well. I have same response, very frightened. Have been told by primary dr that meningiomas are usually benign, and I am thankful for that, but there are no guarantees. I am attempting now to see neurologist at UCSF, asap.

I'm told my bone flap (from 2023 crainiotomy and subsequent removal of infected hardware and bone chip left after surgery] may still have bacteria in it and a "10-minute crainiotomy" could be done to determine if, in fact. there is infection still there. This 10-minute procedure would be enough to scrape some bone to do more testing on bone flap situation. What does your dr tell you about your "indolent bone infection?" I had 6 weeks of daily antibiotic infusions after removal of the infected hardware. My dr said I would probably need that again if I choose to have the "10 minute" procedure to get a new bone scraping. Have you been taking intravenous antibiotic treatment? I'm in a 6-month waiting mode to see what to do. Thank you.

Exactly. I just had surgery Oct 23 to remove a 4.2cm x 2.8cm meningioma at Mayo in Phoenix. It was discovered in June 2024 after an unrelated trip over my cat. It was just under the skull in the left temporal area and was thought to be a fairly straightforward. As they uncovered it however, they found it to be pretty sticky and was beginning to extend into new areas a bit, even though slowly. It took more time than expected and did need to be removed for sure. Surgeon said waiting even 6 months could have caused some new difficulties.
So each case is very different and you can't really know what surgeons will find. I was covered by lots of prayers. I believe that made a big difference. I also worked hard 8 weeks ahead of surgery to really clean up and strengthen my body (66 yrs old). I had no sugar, no alcohol, no processed foods, drank lots of water, exercised regularly, made sure I had a dose of good olive oil each day, etc. I am still in recovery but am so very grateful for the timing and for the care I received. I may not have my eyebrows line up again exactly right once the swelling is all gone, but I am VERY glad I went ahead with things. It is so important to stay positive and be proactive physically and spiritually! That's been very powerful for me.

Thanks! You’re right, I need to focus on healing and getting strong/healthy. Stay positive!

Please do not go down that road second guessing an informed decision you made in concert with respected neuro doctors. It doesn't serve any purpose except to cause one stress. Just continue to focus on your recovery and the next steps in your treatment. And it could very well be it was the best decision to move ahead with surgery. I had a radiation oncologist tell me these usually slow-growing meningiomas can "turn" and suddenly become aggressive. Then, if you chose the watch-and-wait protocol, a lot could happen before the next annual MRI check up. You could have ended up in a worse situation with regard to the meningioma wrapped around/invading other sensitive structures.

I will never know if I truly had to have surgery. Maybe I never would’ve gotten symptoms.

@mono21, when are you scheduled for the CT scan? How are you doing?

I have the same as you only on the left side. Diagnosed n 2006, surgery 2017, hardwear removal 2020 (I was told they removed all of it)
2023, surgery to biopsy the bone flap, 2024, found out they didn’t remove all of the hardware. I have an indolent bone infection from my craniotomy in 2017. Waiting for the next part of my long journey.