Meningioma: Anyone else? I'm frightened

A good surgeon and proper radiation and kemo worked for me. But mine was
cancerous

My understanding is that neurologists treat diseases of the brain. Any time one is dealing with tumors, of which a meningioma is one kind of a benign tumor, consult with a neurosurgeon. The recommendation not to wait 6 months to see a neurosurgeon is far better than what my primary care doctor said, which was, basically, "No worries. We find these meningiomas, incidentally, all the time, when scanning patients for other issues." No referral at all. This resulted in me almost being out of the window for treatment either surgically or with radiation which would have resulted in me losing my eyesight in one eye. As it was, two neurosurgeons said they wouldn't even attempt to remove it. The radiation oncologist said, "Whew, you're just going to make our 3 centimeter cut off point." (My meningioma was 2.7 cm)
My daughter insisted I go to UCSF where the neurosurgeon stated most confidently that he had no concerns about removing it. So kudos/praise to your primary care doctor for advising you to see a neurosurgeon.

I've had a craniotomy and am now on watch-and-wait for 2 other meningiomas. Benign meningiomas typically grow only 1 to 2 millimeters a year. (I was told by a radiation oncologist.) So with annual MRIs one can safely watch-and-wait ad infinitum unless (1) the meningioma, even a smaller one, is pressing on nerves or other brain structures causing symptoms that one determines is is compromising their quality of life, and (2) keep in mind if this benign tumor (85% of the time, I'm quoting bfschemikerin-my own oncologist referenced 90%) keep in mind that if the meningioma is not in a location conducive to resection (removal) then your window for radiation therapy closes somewhere between 3 and 4 millimeters of growth.

I was told by my primary that I would be seeing a neurosurgeon not a neurologist and that it wasn’t an emergency but not to wait 6 months down the road. To me that sounds kinda urgent.

True that! The only good thing about meningioma is that although it is troublesome it is rarely fatal. A radiation oncologist told me that with the resection and radiation therapy I stand a good chance of living out a normal lifespan. The odds are in our favor.

I think everyone who suddenly is faced with something growing in his/her head will experience anxiety. The question is how to deal with it. The wait and see approach is prudent to understand how the meningioma behaves. The scientific publications state that 85% of meningiomas are benign. You don't want to rush into a treatment that causes more harm than good. "But the wait and see approach" means dealing with the unknown and that causes anxiety. We are all in the same boat.

I also had a scan for migraines. I was told I have a small meningioma, and prior scans for the last 3 years did not show it.
Neurological said it’s probably been there, but too small to show. Currently, she is taking watch/wait approach.. I am quite upset about this diagnosis.
It’s difficult not to think about it.. She doesn’t seem concerned.
I got a second opinion. They match. Still; I’m frightened. Any one else have a similar situation?.. Thank you.

I too received a meningioma diagnosis after a ct scan for migraines. I was as told it’s very small. I have an appointment this week with my Neurologist. I’m going to ask about size.. She also said it’s probably been there for 3-4 years. Past scans never showed it.. am very frightened.. We are taking the watch/wait approach..
Any one else experiencing anxiety over their diagnosis?

Warmest regards, I was diagnosed with a 2cm calcified meningioma one and a half years ago. It was found when I had a CT scan due to a concussion; as most meningiomas are found incidentally. I followed up with a neurologist and she ordered an MRI with/without contrast. As expected, it had not grown, but a second one was unexpectedly found that was too small to have been seen on an CT. I had a follow up MRI 6 months later. I started having headaches, vision changes, balance issues, etc., and repeated the MRI a month early. It still had not grown, as expected. While discussing the 1st growth and the discovery of the second, we did a review of my medications for other issues that led to making changes with those, in consultation with the prescribers. The changes I made were lowering the dosage of my GLP-1 and going off of Prozac (after being on it for 30 years). WHAT A DIFFERENCE! All of my symptoms that I was relating to the meningiomas, went away. Close your eyes and take a deep breath. The initial shock can be very frightening. Make a long term plan on how to approach living with the meningiomas. Find a provider who you can fully trust. Take someone into your appointments so they can ask questions that you may not have thought about or forgot. They can be a reference point for after your visits if you think of something that you may missed or forgot from the appointments. Basically they can act as an advocate for you and help put a perspective on your status. The Mayo Clinic has some fantastic educational materials that can be sent to you for free. I strongly recommend them. They step you through the journey with the twists and turns that we live with from the moment of the initial shock of the diagnosis. I wish you all the best and believe that there are positive outcomes when dealing with tripping over this pebble in our road of life.

Thank you, both kdog and Maryann! I’m not a confrontational person, so was afraid to ask the Doctor, figuring they know what they’re doing. I’ll ask the neurologist if I can lower or quit the Keppra. It’s making my life really, really miserable!