Living with a meningioma: What warning signs may indicate changes?

I was diagnosed with meningioma 2 and a half years ago. Regular MRIs showed no change, until now. It's growing. I'm having it removed this fall and I'm quite anxious about it. I will have a craniotomy. My tumor is 3cm and on my olfactory groove.

Each situation is unique.
Recommend doing your own research.
Meningiomas are "typically" benign, but they can be cancerous as well.
They "take years to grow" but who knows how long that is.
Do the regular MRIs. They aren't radiation like CTs.
They don't typically "cause an issue" unless pressing on or wrapped around something (in my case, pressing on left side optic nerve, needing emergency crainiotomy;another one wrapped around right side carotid artery which I had proton therapy treatments for).
Second opinions should be done. I was not recommended for proton therapy but very grateful I did my own research and found doctors who readily accepted me for treatment. I did not want another craniotomy. Even if I get more meningiomas, I am grateful for the doctors I've had, and grateful that I did my own research.
Ask every question you have.

I was diagnosed May 31 and they said it has to be removed due to pressing on my left optic nerve and pituitary gland. I agree with second and/third opinions. I’m very anxious/nervous as well.

Where did you find someone to do Proton therapy? I’ve asked at two places now and they both said they don’t do it. Just gamma knife.

Mine is behind my left eye and close to my optic nerve. Are you having any symptoms? Are you having a craniotomy? I think that's the only way they can get to mine. I've had a lot of surgeries ( no spleen, hip replacement, ACL,etc) but none of those scared me the way this craniotomy does. Thank you for sharing your comment. It helps to know I'm not alone in this.

The first neurosurgeon, I saw said he had to do a craniotomy and lift my brain to get to it. I know someone that had a tumor in the same area and he said they went through his nose, minimally, invasive, and remove the entire thing. His was 4 cm which is twice the size of mine, he said get another opinion. So I looked around and found someone that had a fellowship in the Intranasal technique. He said they should never do an open craniotomy for these because it’s much more dangerous. He’s confident he can get 80% of mine then I’ll have to have radiation either Gemini for proton therapy to stop the growth hopefully shrink it. My left eye has become fuzzy but I thought it was just getting older. I’m also going to Mayo in July for a third opinion. I’m very scared too. I hope that helps. I’ll be on here throughout this journey

Diagnosed with a 4.5 meningioma Feb 2023.
Craniotomy on Feb 28, 2023.
Pathology came back malignant.
Turned out to be a solitary fibrous tumor of the CNS.
Very rare.
Surgeon had to leave a small piece too close to my Sagittal sinus. 6 weeks of daily radiation.
3-6 months of PET and MRIs
Last week scans are good!
No metastasized, MRI good!
Prayers answered.

Mayo Clinic, Rochester, MN
Other places that do it are Emory in Atlanta, Mayo in Jacksonville and maybe Arizona, Loma Linda in CA (have been doing it the longest in the US).
Look online. You will find at least 40 places that offer it in the US.

Thank you so much for this information, I think I will get a second opinion. My surgeon said going through the nose was not a good option for me but I didn't really understand his explanation of why. A friend of mine works at Mayo, I think I need to reach out to her. Thank you again, it is a journey.

@tonimt, getting a second opinion can be helpful. You might appreciate learning that Mayo Clinic has a 48-hour access program for brain tumor. When you call at any of the 3 campuses, you have the opportunity to be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

@jasonl1012, proton beam therapy is offered at Mayo Clinic in Rochester, MN and Phoenix, AZ. Here is more information about the
- Mayo Clinic Proton Beam Therapy Program https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488