Meningioma: Anyone else? I'm frightened

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.

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."

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.

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 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

azbailz: I was 71 when I had a left sphenoid wing meningioma removed 9 months ago. It was 1/16th if an inch from my optic nerve. I am glad to hear you have a good surgeon. That is the key. My main reason for responding is to tell you the craniotomy was not the nightmare I had envisioned it to be. I was up and walking to and from the bathroom the day after the surgery. And post surgery, the only pain med was tylenol. Good luck.

I had it at Mayo Clinic St. Mary’s Hospital in Rochester, Mn.
Very nice people in rehab also.

Where did you have your surgery?

Rachel, I've had two meningiomas - one was pressing on optic nerve and my eye dr found the issue that was causing one severe headache after months of what I thought were "caffeine headaches." I was sent to the ER immediately for a crainiotomy. I was advised not to fly to the hospital of my choice due to "pressure" on the area of the brain. The second meningioma is abutting my optic nerve and wrapped partially around carotid artery. I researched options besides crainiotomy on my own, as I didn't want to go through another one if not necessary. I found proton therapy radiation, which is available at at least 40 centers in the US. You could research that modality. It is painless and is less than a few minutes a day over a certain period of time. Check who takes your insurance for it, if you decide to go that route. It helps to do your own research and be your own advocate, as mentioned above. May you go forward in peace.

AZ, I had a meningioma near my left optic nerve and around my carotid artery in February. The surgeon said he got it out. Things have been going well, but fatigue takes awhile to recover. Hope all goes well.