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.

I agree that one should learn everything they can about their type, grade, location, and treatment options with a meningioma brain tumor. Ask questions and expect very detailed responses from your provider. Always have someone present with you to act as the listener and recorder of information. Being informed that you have an incurable brain disease is not for the faint at heart, under no circumstance. Seek out and acquire more than one medical opinion before deciding on a course of treatment

I am a 10yr survivor/thriver of an R spheno-orbital meningioma with cavernous sinus involvement. It is still an enigma to me, after a solid decade, why meningioma brain tumors have little to no research being conducted that will provide information as to its cause ( i.e. genetics links, environmental contributors from exposures, etc), applicable treatment options that are individualized based o the tumor factors that affect the patient's ability to sustain some acceptable quality of life.

Most docs, even neurosurgeons, take the medical approach to address meningiomas like most brain tumors, hence, the terminology used in the treatment of them (benign, resection, "got it all", etc.)

Meningiomas are indeed incurable. It is a type of brain disease. While there is no scientific evidence to date that has addressed the loss of life due to having been diagnosed and/or receiving treatment for a meningioma brain tumor, however, what is proven is that one's body will never be rid of meningioma brain tumor cells. Hence, when docs make statements that meningioma brain tumors are "slow growing" is indicative of that fact.

My non-profit organization provides support services ( awareness, advocacy, social-emotional, healthcare professionals collaborations, etc) to meningioma brain tumor survivors/thrivers and their families where the focus is on addressing the effects these tumors have on one's Quality of Life pre-operative (upon diagnoses and before treatment begins)-and postoperative (after surgical interventions). The aforementioned topics have been found to never be discussed by your healthcare providers.

I continue to undergo MRIs w/wo contrast every 90 days to keep tabs on the cavernous sinus meningioma involvement ( in the center of my brain known as the "sweet spot"). The MRI frequencies are not my medical team's approach to monitoring the tumor, that is my decision because meningiomas are very cagey tumors and active recurrence can happen at any time without symptoms.

Be diligent in learning all that you can about the meningioma that affects you or your loved ones. On the non-profit's website, my tagline is "Only those of us living this story can authentically author it"!

Go Well...
A Meningioma Survivor/Thriver

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.