Frustrated and confused about my meningioma & an Update
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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@doyel sorry this reply is from me Cynthia Doyel not Dolly I find this site confusing to use
@doyel
It’s tough. Prayers lifted for you. Keep in touch.
Have a happy and healthy new year!
Dolly
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1 Reaction@as72 so sorry it took me so long to respond. For my case I was told unless it grows it would not be removed. However my Neurologist dismissed the constant migraines, vision changes and seizures. The first surgeon I met with said no surgery but when I asked for a 2nd opinion his supervising surgeon agreed to see me. He gave me 3 options. 1) wait and see if it grows 2) have a biopsy done and then go from there with possible radiation or 3) have surgery if I could convince him that it would improve my quality of life. I went with the surgery option and I feel it was the best choice for me. I am just over 5 weeks postoperative and the headaches have improved significantly. I still do have a small headache every now and then but nothing compared to before. My hair is growing back and you can’t really see where they cut. I still have to have another MRI in February and then discuss if I will still need radiation or not. I hope my story helps you. If you have any questions let me know and I will try my best to help. Good luck and trust your body to tell you what is right. I don’t regret my decision just wish someone would have listened to me sooner.
@colleenyoung I still have a little bit of pain. It feels like a sharp stabbing pain where the incision was and behind that is still numb. However over the weekend I was getting a pain right in front of the incision and when I felt it, it was hard to the touch. My husband thinks it’s scar tissue but I am wondering if it might be the hardware they put in. I go back and see the neurologist on the 31st just to check in about the headaches and I will ask him what he thinks. Then go back in February to see the surgeon.