Meningioma: Anyone else? I'm frightened

Mine was found through a MRI. Don't worry about getting one. The worst part is its very loud. You neecd ear plugs. They put something that looks like a basket over your face so they can center you in the machine and you don't move. The contrast in an IV. when it goes in you feel a warm flash through your body. and that's it. Piece of cake

My goodness Dolly, you been through a lot. Would they do surgery at your young age? I'm 67 and was just diagnosed last week.

I was just diagnosed with a meningioma brain tumor last week. I'm freaking out a little. I saw that you had trouble with you vision. My vision has gotten really bad really fast. I don't know if were the same but can you describe what you see. I can't see at night. All the lights look like fire works. Its awful and pretty at the same time. My memory is also bad. I can't remember the name of things. And sometimes I lose my train of thought at the end of a sentence. I'm scared too

It was found when I was in hospital for concussion after four falls on one day in Jan. 2024. I am 79.
The growth was spotted then by MRI.
Next I saw a neurosurgeon who was not concerned as it was very small.
I have had headaches from the falls and have been diagnosed with PTSD.
In two weeks I will have a MRI with contrast.
Thank you for your interest and concern.
Dolly

dollyjane: Have you been referred to a neurologist or neurosurgeon yet? Or did your primary care doctor order the MRI and you're waiting for the results of the scan before you're being referred out?

Yes, it seems like a pretty high dose to me. Is it working? Are your seizures controlled? Was the dosage raised gradually to control the seizures?

I’m taking Keppra XR 750 mg 2x a day. And no noticeable dizziness or seizures. After the first seizure after surgery, I started with 250 mg 2x a day of regular Keppra and the seizures still happened but as the dosage was slowly raised the individual seizures became less noticeable. The first seizure generalized and I woke up on the floor; the so far last one, only the left side of my tongue twitched. (Really weird, I can’t consciously vibrate just the left side of my tongue.)

Best wishes in finding the best combination of medicines for you.

I am in the same boat. Mine was found over a year ago, but I now have bad headaches and am having a MRI with contrast in a week. I am scared too.

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.