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 Maryann @mkoch

Oh, darn, just reread what I posted in response to your reply and a correction needs to be made. The last sentence regarding the window closing for radiation therapy. It should be the window closes somewhere between 3 and 4 Centimeters, not millimeters. I am sorry for this typo. I guess I forgot to proof read. So you are still a candidate for radiation. Also, you are 67 years young; I was 72 when I had a craniotomy to remove a large meningioma that was almost 3 centimeters. By the way, the neurologist I consulted with initially gave me wrong information and said my benign tumor was inoperable. So I encourage you to now consult with a neurosurgeon, especially given you feel as if the neurologist didn't really discuss your situation at length. It's your brain, after all, and deserve to have all the details and options discussed.

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My neurologist and neuro oncologist tell me that my Mengioma is inoperable. Neurologist yesterday answered saying that the meningioma can not be removed from the trigeminal nerve. I am only 59 and after reading this a second opinion is absolutely needed.

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Profile picture for poofy @poofy

Thank you. You just gave me a lot of info. Best so far. My nerologist didn't seem to want to discus it. She kept trying to move on to finish the results of my MRI. I don't even no mine is located. My turmor is 7x5x5mm so no radiation for me. I'm 67, might be to old for surgery.

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Oh, darn, just reread what I posted in response to your reply and a correction needs to be made. The last sentence regarding the window closing for radiation therapy. It should be the window closes somewhere between 3 and 4 Centimeters, not millimeters. I am sorry for this typo. I guess I forgot to proof read. So you are still a candidate for radiation. Also, you are 67 years young; I was 72 when I had a craniotomy to remove a large meningioma that was almost 3 centimeters. By the way, the neurologist I consulted with initially gave me wrong information and said my benign tumor was inoperable. So I encourage you to now consult with a neurosurgeon, especially given you feel as if the neurologist didn't really discuss your situation at length. It's your brain, after all, and deserve to have all the details and options discussed.

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Profile picture for Maryann @mkoch

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.

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Thank you. You just gave me a lot of info. Best so far. My nerologist didn't seem to want to discus it. She kept trying to move on to finish the results of my MRI. I don't even no mine is located. My turmor is 7x5x5mm so no radiation for me. I'm 67, might be to old for surgery.

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Profile picture for mbaxter @mbaxter

I had a meningioma removed at Mayo in 2007 when I was 63. They thought it would be benign but was a Who Grade 2. They wanted to do radiation as they thought it would grow back as cancer. I said no. It took me a few years to get "it together" but am now doing well. My EX husband was not supportive and left after a year when I still had difficulty walking and thinking well as my brain was still inflamed. But now I'm enjoying life much more. I was lucky as my meningioma was in my right frontal cortex and mostly effected my left side and balance rather than vision or memory.

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Wow! Your an inspiration and your ex is a jerk. You are very willed. I'm so happy to hear that your well now. I find it comforting when I hear success stories. I'm just starting this Journey

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I had a meningioma removed at Mayo in 2007 when I was 63. They thought it would be benign but was a Who Grade 2. They wanted to do radiation as they thought it would grow back as cancer. I said no. It took me a few years to get "it together" but am now doing well. My EX husband was not supportive and left after a year when I still had difficulty walking and thinking well as my brain was still inflamed. But now I'm enjoying life much more. I was lucky as my meningioma was in my right frontal cortex and mostly effected my left side and balance rather than vision or memory.

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Thanks! Reduces my anxiety.

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Profile picture for dollyjaneprenzel @dollyjaneprenzel

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

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They give you earplugs. Maybe they might have headphones for music

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Profile picture for dollyjaneprenzel @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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