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 Randy Shields @randallshields56

@piperleah its so hard for our loved ones to really understand till they are lying in a uncomfortable sofa, couch, bed hard as a rock thing taking turns watching over you every night and taking shifts as to whos up next. they need to watch some videos now so if and when the time comes they dont shy away or cant handle things as they are meant to do. i was lucky first go around and it was costly on family, taxed their life styles and energy and so much more, my best advice is get connected in prayer chains and group prayer chains , they really work. I'm sending you a prayer now and good vibes-------------sent. have a blessed evening

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Thank you for the hug

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Profile picture for piperleah @piperleah

Thank you so much for your kind words. It’s not easy to not think about it, but I think I’ve done a pretty good job lately. I was in a downward spiral with health and family issues when I was first diagnosed. That sent me plunging. Had a test done, said I had mild cognitive decline. My family was not worrying, as my husband told them there was nothing to worry about. Wth. It’s not that I want anyone to worry about me, but I certainly want them to know about it, and why I may act this way or that. Good luck with yours!

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@piperleah its so hard for our loved ones to really understand till they are lying in a uncomfortable sofa, couch, bed hard as a rock thing taking turns watching over you every night and taking shifts as to whos up next. they need to watch some videos now so if and when the time comes they dont shy away or cant handle things as they are meant to do. i was lucky first go around and it was costly on family, taxed their life styles and energy and so much more, my best advice is get connected in prayer chains and group prayer chains , they really work. I'm sending you a prayer now and good vibes-------------sent. have a blessed evening

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Thank you so much for your kind words. It’s not easy to not think about it, but I think I’ve done a pretty good job lately. I was in a downward spiral with health and family issues when I was first diagnosed. That sent me plunging. Had a test done, said I had mild cognitive decline. My family was not worrying, as my husband told them there was nothing to worry about. Wth. It’s not that I want anyone to worry about me, but I certainly want them to know about it, and why I may act this way or that. Good luck with yours!

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Profile picture for piperleah @piperleah

I have a small meningioma left frontal lobe. Diagnosed almost 3 years ago. Just had appt about my recent mri. Said grew minimally in the last year. Felt good about that. I wrote down a page full of things that I’m feeling. She said mine is too small to cause ANY of the issues. I’m 69. The white matter increased also, she said: just aging. I feel good knowing it hadn’t grown, BUT googling for so long, my symptoms are listed as symptoms of a meningioma. She said she’s a neurosurgeon and I should see a neurologist. I’ve had many symptoms for years, with no help of why. Aging? She also said there was no blood test to diagnose Alzheimer’s and the only way you can prove is an autopsy. I give up.

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@piperleah
Don’t give up. I don’t think you have the big A. You are to competent. If you can manage it, go to a University teaching hospital. Doctors there are the most up to date people in their field. Sending hugs, blessings and hopes you will keep us informed. (I am at the watch and wait stage with my
meningioma. It’s a struggle, I understand.) Dolly

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Profile picture for piperleah @piperleah

I have a small meningioma left frontal lobe. Diagnosed almost 3 years ago. Just had appt about my recent mri. Said grew minimally in the last year. Felt good about that. I wrote down a page full of things that I’m feeling. She said mine is too small to cause ANY of the issues. I’m 69. The white matter increased also, she said: just aging. I feel good knowing it hadn’t grown, BUT googling for so long, my symptoms are listed as symptoms of a meningioma. She said she’s a neurosurgeon and I should see a neurologist. I’ve had many symptoms for years, with no help of why. Aging? She also said there was no blood test to diagnose Alzheimer’s and the only way you can prove is an autopsy. I give up.

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@piperleah: You have composed such a well written post I would not worry about Alzheimer's. So the neurosurgeon is adamant the symptoms aren't from your meningioma. Put her opinion aside and see a neurologist. Neurosurgeons focus on brain tumors and surgery and a neurologist deals with all kinds of maladies of the brain. I think your neurosurgeon is thinking you have something else going on not in her wheel house to treat. (She may very well be wrong.) It's always good to get a second opinion. Maybe the neurologist will even suggest getting a third opinion from a different neurosurgeon.

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Profile picture for piperleah @piperleah

I have a small meningioma left frontal lobe. Diagnosed almost 3 years ago. Just had appt about my recent mri. Said grew minimally in the last year. Felt good about that. I wrote down a page full of things that I’m feeling. She said mine is too small to cause ANY of the issues. I’m 69. The white matter increased also, she said: just aging. I feel good knowing it hadn’t grown, BUT googling for so long, my symptoms are listed as symptoms of a meningioma. She said she’s a neurosurgeon and I should see a neurologist. I’ve had many symptoms for years, with no help of why. Aging? She also said there was no blood test to diagnose Alzheimer’s and the only way you can prove is an autopsy. I give up.

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@piperleah Just adding to my earlier reply, I also met with a neurologist and that was very helpful also!

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Profile picture for piperleah @piperleah

I have a small meningioma left frontal lobe. Diagnosed almost 3 years ago. Just had appt about my recent mri. Said grew minimally in the last year. Felt good about that. I wrote down a page full of things that I’m feeling. She said mine is too small to cause ANY of the issues. I’m 69. The white matter increased also, she said: just aging. I feel good knowing it hadn’t grown, BUT googling for so long, my symptoms are listed as symptoms of a meningioma. She said she’s a neurosurgeon and I should see a neurologist. I’ve had many symptoms for years, with no help of why. Aging? She also said there was no blood test to diagnose Alzheimer’s and the only way you can prove is an autopsy. I give up.

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@piperleah I also have a meningioma. After my first visit with a neurosurgeon he recommended I get a second opinion. I did just that, actually got 2 more. And I am happy I did. The additional consults helped me to fully understand my particular tumor. And the differing perspectives helped to find a path forward that felt right for me. I wish you the best!

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I have a small meningioma left frontal lobe. Diagnosed almost 3 years ago. Just had appt about my recent mri. Said grew minimally in the last year. Felt good about that. I wrote down a page full of things that I’m feeling. She said mine is too small to cause ANY of the issues. I’m 69. The white matter increased also, she said: just aging. I feel good knowing it hadn’t grown, BUT googling for so long, my symptoms are listed as symptoms of a meningioma. She said she’s a neurosurgeon and I should see a neurologist. I’ve had many symptoms for years, with no help of why. Aging? She also said there was no blood test to diagnose Alzheimer’s and the only way you can prove is an autopsy. I give up.

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Profile picture for krinlynn @krinlynn

My meningioma is odd shaped 1.5x1.8cm. Having issues lately and now there is fluid around it where there wasn't before. Have neurosurgeon appointment tomorrow at Vanderbilt to determine next steps

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@krinlynn welcome to the group and best wishes and sending prayers your way.

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My meningioma is odd shaped 1.5x1.8cm. Having issues lately and now there is fluid around it where there wasn't before. Have neurosurgeon appointment tomorrow at Vanderbilt to determine next steps

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