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Frustrated and confused about my meningioma
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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I saw a neurosurgeon today and he said the same thing…..watch and wait. He said that he believes that I have a non-epileptic seizure disorder and the pain that I’m feeling in my head is still migraines. I have a follow up with the neurologist in September so I guess I’ll just wait and see what he has to say. In the meantime they are asking for MRI of my neck and low back for other issues
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1 ReactionMine was a 3 but was putting off systems, it was removed!
My first question was can we remove it. He said it would have to be 10x its size before it would cause issues. And this was my second opinion. Not dissing on him but he was a PA. My husband was quite upset that I was not able to see the surgeon. I told him that it’s the norm for the first visit to become an established patient. I guess I will just go back to the first doctor and figure out why I am having the symptoms.
Thank you for your kind words. I don’t believe we have Mayo here in Colorado.
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4 Reactions10 times that size seems wrong. It has to be as big as half your frontal lobe? I definitely would not just see a PA. You need to talk to the actual neurosurgeon, and possibly the whole team. Neurooncologist, etc. find a major medical center even if you have to travel a bit
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3 ReactionsI feel like you just described what I’m going through! I switched neurologists because she said to me, “Why do you have so many problems? We are the same age.” It wasn’t concern, it was accusatory. She’s the dr that was on call when I had my TIA and diagnosed my front right cortex meningioma when it was 1 cm in March of 2022. I switched neurologists and she started me on Botox injections for my migraines and I’ve been seeing her for a year. I just had another MRI and my tumor is now 1CM 3 years later and she told me she didn’t even know I had one, but now I have fluid and a large portion of atrophy on the left front side of my brain. I guess im, literally, losing my mind. I related to you losing time. I’ll drive and not remember how I got there. I will be laying down and can see and hear what’s going on but can’t talk or move. My brain shows I’ve had a stroke. She told my nothing showed on my eeg. I pray you get the help you need and your drs listen. Sorry for the babbling
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3 ReactionsThat’s awful. I hope you found better doctors
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3 ReactionsHow did you get anyone to listen to you and nd not just tell you that “it’s just a meningioma, they aren’t cancerous”. After 3 years of “just a meningioma” (right front cortex) that went from 8mm to to 3cm, and a TIA, they just found another spot in my. Left side that they confirmed was hydrocephalus and increased atrophy. I have a terrible time with recall and remembering words, it’s taken me 10 minutes just to write this. I hate getting blown own off 😢
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2 ReactionsI forgot to add that my hands and legs jerk, also. Did you have any of that? Im just wondering what made them really take you serious? I can’t even get SSI!
You can’t see a neurosurgeon around here without a referral, it’s awful. I wish it were different.
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