Frustrated and confused about my meningioma & an Update

Posted by ef0300 @ef0300, Jul 5 6:20am

August 2024 I was flying back east to see family. Unfortunately we missed the first flight so we were booked on a later flight but we’re going to be separated. I begged and pleaded with staff and the people around me to see if they would trade at least 1 seat so my youngest son could stay with me, but no one was willing. Right after we took off I closed my eyes and then started convulsing. I could hear everything around me but couldn’t move or speak. No one around me called for help and it lasted the whole flight which was about an hour. I was finally was able to stand up and get the attention of the crew but still couldn’t speak. They got me off the plane and took me and my kids to the hospital. They ran all sorts of tests including a CT. No mass on the brain, magnesium levels severely low. Doc determined it was a mini stroke. Since then I have had headaches, migraines, multiple falls and several times where I am like frozen and my brain goes on pause then awhile later I am back to normal but no memory of anything. Found a new pcp and he ordered an MRI and referred me to a neurologist. Said I was having absent seizures and partial seizures. He ordered an MRI as the first one was denied by insurance and then he wanted an EEG. Got the results back and they said I have 8x8mm meningioma on my right frontal lobe. EEG said I didn’t have any seizures during the test but can’t rule out epilepsy or seizure disorder. The neurologist said the meningioma is normally not cancer but they just want to watch it for now. I asked if we could just take it out due to the amount of pain it’s causing and he said no one will without proof it’s growing. He put me on injections for migraines and is working on getting ubrelvy approved. In the meantime I have had seizures about every other day and nothing is helping with the pain. I was at least able to talk him into checking it in 3 months not 6. My vision is going bad rapidly and nothing is in focus and I do have auras all the time. I also have CPTSD and severe anxiety and in the evening when doing nothing or very little I start to feel funny so I check my heart rate and it’s at 140-150 every night. I don’t know if that is a symptom of the tumor or what. I can’t even take a shower without be completely wiped out after. If anyone has any advice I would greatly appreciate it. Oh I am 43 year old female.

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Profile picture for ef0300 @ef0300

@colleenyoung they decided that since it had good margins they are going to take it all out then send it off for the biopsy. Had my MRI Friday and got the results today. It has grown 2mm in the last 3 months so it is now 1cm. Surgery is scheduled for Wednesday. Thank you for asking. I am just keeping my fingers crossed that everything goes smoothly.

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@ef0300, thinking of you as you recover from surgery. I look forward to hearing from you when you feel up to it.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@ef0300, thinking of you as you recover from surgery. I look forward to hearing from you when you feel up to it.

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@colleenyoung surgery went good and was released the next day. Biopsy came back as grade 1 meningioma benign. I have 16 staples in my head and they didn’t and won’t give pain meds to manage the pain. So far the headaches are gone but I have pain where they cut. The OP report didn’t say much other than I have 3 plates and 9 screws. I go back on Monday for my first post op. Thank you for thinking about me and reaching out

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I am so sorry for your pain. I agree that a second opinion is recommended. I can't say enough about Mayo Clinic's care and process. I live in CA, so going to the Mayo Clinic in Arizona wasn't a big stretch, but yes, it is a costly venture, but one that I now have to do several times a year to watch and wait. But in your case, with having major symptoms, and at your young age with small kids, my heart goes out to you, and hope you can find another expert to guide you.

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welcome to the group and glad you are in recovery mode, this group has a lot of people you can get in touch with. Especially if you have any questions. Have a blessed day.

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Profile picture for ef0300 @ef0300

@colleenyoung surgery went good and was released the next day. Biopsy came back as grade 1 meningioma benign. I have 16 staples in my head and they didn’t and won’t give pain meds to manage the pain. So far the headaches are gone but I have pain where they cut. The OP report didn’t say much other than I have 3 plates and 9 screws. I go back on Monday for my first post op. Thank you for thinking about me and reaching out

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@ef0300, glad to hear the headaches resolved. How is the pain at the incision? Is it getting better and healing well?

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Profile picture for wgdjr73 @wgdjr73

Thank you for sharing.
I am 73 years , male .

Just been diagnosed with maningiona I was ok until I saw the catscan. They said it was small on the left side of the head.
Still seeing a neurologist on this coming Tuesday and I'll have more information information will bring more peace the best I can to determine the course of direction. I hope you get well soon and have peace in your heart know that people do care about you.

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@wgdjr73
I’m 72 yo female and found 1.8 cm benign meningioma on the left inferior frontal lobe with large amount of edema. Started on steroids two days ago and mild headaches are gone. I see a neurosurgeon Wednesday. Can you tell me more about your experiences?

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