Meningioma: Anyone else? I'm frightened

i was first diagnosed with a meningioma in 2018. I am not frightened. i have very good drs and my meningioma is tiny, slow growing and am asymptomatic.

almost my entire life, ive had numerous growths on organs….only two needed to be removed and those were both on my ovaries. Wishing you the best

I was diagnosed in 2005 with a menginoma tumor. My neurologist said they are almost always benign and to have a follow up mri annually. I did this for several years then got remiss and stopped going. On 2018 my family doctor wanted me to have one as a precaution. I was told it was growing and I also had a very rare non treatable, non curable amyloid angioplasty. I went to the Mayo Clinic for a second opinion. They were unable to confirm the amyloid angioplasty because the one way would be to do a brain biopsy after death. They did say my menginoma was growing and advised doing a Gamma knife on my tumor to slow or growth. Unfortunately it didn't work and the tumor continued to grow. I had 2 seizures and 2 strokes and had to have emergency surgery to remove the tumor that had appendages growing out of it. Unfortunately they were unable to remove them all. They did biopsy one that showed stage 1 cancer. I see my neurologist every 6 months with MRIs brain scans. In March of 2023 I had a stroke. The neurologist felt that it was caused by my blood thinners that I take for a mechanical heart valve . My blood gets very thick which can cause a stroke. I .would encourage you to be faithful in getting routine MRIs
because you might not know if it is growing . Prior to my seizures and strokes I had no symptoms. As a result of my seizures, strokes and surgery I have left sided balance and weakness.

I just had a CT scan for a sinus problem. The sinus problem was resolved but the scan showed a calcified focus along the posterior asect of the planum sphenoidale protruding into the suprasellar cistern measuring 07 x 0.9 x 1.3 cm. It may represent a calcified meningioma. Recommend follow up with MRI. I am scared. As far as I know I am not having symptoms.

Take comfort in the fact that even if you have a meningioma they are usually benign. And, if it is classified as "calcified," that's an even better indicator of it being non-cancerous. If an MRI does indicate a meningioma for sure, I would consult with a good neurosurgeon on how to proceed. My primary care doctor and a local neurologist (not associated with a teaching hospital) both said, basically, "No worries. We find these incidentally all the time in old people when they are scanned for other issues." Upon insistence from my daughter, I consulted with a neurosurgeon at a teaching hospital and he said, "It needs to come out before it grows into your optic nerve."

Thanks for your reply. If you don't mind me asking how big was it and where was it located, was it calcified. I read they don't remove them until they are 3 cm or over and causing a problem. Where was it located? Where did you have the surgery? I would like to avoid surgery if possible.

geedle12: My meningioma was a "sphenoid wing" meningioma, 2.7 centimeters, located 1/16th if an inch from my optic nerve. The meningioma was not calcified. It was benign. I was advised by a radiation oncologist that if one's meningioma is problematic and needs to be dealt with that removal is always the first choice. I was told by 3 doctors that no surgeon would feel comfortable operating b/c the meningioma was in a difficult location, too dangerous to remove because of my optic nerve and location of arteries, etc. So I thought radiation was my only choice. But a neurosurgeon at the University of Calif. in San Francisco said, "No problem. I do one or two a week in that location." (insert smily face emoji) My husband calls him the rock star of neurosurgery. By the way, the radiation oncologist, the person who would have planned the radiation protocol had I gone that route, said you can't usually have that procedure done if the growth was more than 3 centimeters.

Thanks for responding. Glad you are on the mend. I have my mri in September and will make a decision.

I was just diagnosed with bilateral frontal convexity meningiomas. This was an incidental finding on an MRI. I don’t have any symptoms. The sizes are 9mm and 1.3cm. My father had an acoustic neuroma and cousin has a grade 3 glioma. I recently had an appointment with a Neuro-Oncologist at Memorial Sloan Kettering who told me not to worry due to their size and meningiomas typically being benign. He suggested I follow up with another mri in one year.

I was diagnosed with a meningioma in 2018. I was having double vision at night. My ophthalmologist sent me to a neuro ophthalmologist and he got me an appointment with a neuro surgeon within a week. It was scary. The surgeon- Dr. Fields was very caring and said since it was under 3cm, I could have Gamma Knife surgery or a craniotomy as the Gamma would only stop it from growing and the craniotomy would remove it. I researched the Dr. and Gamma surgery. I chose Gamma. I had to have an MRI 3 months later and then every year for 2 years and now the MRI's are only needed every 4 years. The Gamma surgery worked and it hasn't grown. (I just had my MRI) Gamma surgery is non-invasive and you only have to take it easy for a few days.
Good luck and let me know if you have any questions.

I was diagnose with a Meningioma Brain Tumor & it’s scaring me to be honest. Lately I’ve been getting really bad headaches.