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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 can only hope the best for you and outcome is in your favor. I had a
large tumor removed, no choice kind of thing. A lot of what you went
through and put it in your 📫 happened to me also. Especially the seizures
and headaches and so much more. Will be 69 this year and am blessed to
have survived. Mine was cancer and a frontal lobe, right. A family of
awesome support and prayer chains. What a fight to make it through, but I
fight for it every day. Sounds like you're a fighter to. I wish you nothing
but the best for you and you're family's
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.
Thank you for the kind words. Yes I am a fighter just like my son. This month he celebrated 15 years in remission and will also turn 17.
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1 ReactionThank you for your kind words and I wish the best for you too. I know the waiting is the worst part. Best of luck
@ ef0300. Dang, I’m sorry you’re going through that! That’s awful. All I can stress is the importance of 2nd, 3rd, 4th opinions. Some doctors know a little and others experts with a lot of experience in these different areas. Have you tried Mayo? They are excellent and will get you a team of doctors in different specialties to help you. I went to 3 different neurosurgeons before settling on one and I had very mild symptoms. I’m wishing you the best!
Sorry you are going through all this. There ARE doctors who will take out the meningioma, even if not growing, because you are symptomatic. My suggestion is to see a neurosurgeon quickly, preferably at an academic institution. I went straight from the MRI to neurosurgeons- have not seen a neurologist at all. I saw 6 neurosurgeons and only one wanted to wait for a follow up scan in 3 mo. The others were prepared to remove it or radiate it quickly, depending on my preference. And mine is much smaller than yours. I am also symptomatic like you, and that makes a big difference. Agree that otherwise docs may not want to operate. Hope that’s helpful perspective.
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1 ReactionMine struck me outside the house and had no clue till hit the ground and week later again a collapsed. Being 17 and having to cope had to be tough. I wish I had a better answer. Best wishes for you and your family