Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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Profile picture for Dolly Jane @dollyjaneprenzel

Young age? 🥹 I doubt they would do surgery at 79!
Given my headaches, this should probably have been investigated fully a year ago. Thanks for being in touch. Keep us posted and I will do the same.

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Ok. Its good to know someone who understands. And you are 79 years young

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Profile picture for poofy @poofy

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

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Thanks for the info. Noise prevents me from going to the movies so I am anxious!

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Profile picture for poofy @poofy

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.

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Young age? 🥹 I doubt they would do surgery at 79!
Given my headaches, this should probably have been investigated fully a year ago. Thanks for being in touch. Keep us posted and I will do the same.

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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

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Profile picture for Dolly Jane @dollyjaneprenzel

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

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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.

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Profile picture for may04tamtam @may04tamtam

Yes, I was diagnosed with one in 2019. Unfortunately, the discovery came too late to spare the damage to my optic nerve and vision. It had grown wrapped around my optic nerve sheath, so the doctors wouldn’t even biopsy it, much less perform surgery to remove it. I ended up undergoing 28 daily radiation treatments to kill the tumor. It did not restore my vision, but it is not currently growing. For reference, I was 55 when diagnosed.

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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

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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

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Profile picture for Dolly Jane @dollyjaneprenzel

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.

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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?

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Profile picture for dbicher @dbicher

Background: Had meningeal tumor removed 3 1/2 years ago after silent stroke. My son took me to my primary care doctor well before that point. Doctor gave me three of those tests (that Trump passes easily) and told my son that I was “just getting older.” After my son consulted with my siblings, there was discussion of putting me into a senior facility. Luckily (!?) I had the seizure at that point, had the surgery, and within two days I was back to normal. BUT, I’m still taking generic Keppra XR (750mg 4 times daily) and Vimpat (50mg 2 times daily.) Is this a normal amount? Even after 3 1/2 years, I am still too dizzy to do much walking at all. Dizziness is a byproduct of Keppra. Anyone have a suggestion on how to approach my Neurologist on this?

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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.

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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.

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