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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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Thank you, welcome to the group. Don't feel like you're getting blown off. Some doctors bedside manners suck.i can help with a couple of things if you want. Just reply to this message
To be honest right now I am not sure the doctors are listening to me. My old PCP said he believed that the episode in August 2024 was a TIA or mini stroke. At that time the CT didn’t show any mass. But when I started having more seizures and non stop migraines they did the MRI and it was an incidental find of the meningoma. My neurologist told me it’s not a tumor but a meningoma is a tumor. But the neurosurgeon said yup it’s a tumor but most of the time benign and unless it starts growing he wants to leave it be and recheck it in a year. I applied for SSDI last year due to other issues but added this diagnosis in and was denied. This just keeps getting more frustrating. I had a point when I started this reply but now I have no clue what it was. I can’t focus on anything but yet SSDI said you are fine and don’t qualify for help
Ok so now I am more frustrated than ever. So I saw the neurosurgeon about my back and figured since I was there I would ask about the tumor. He said no not going to remove it until it was 10x the current size. I was like ok but I am symptomatic and he said the seizures are non epileptic seizure disorder. I had more MRIs and X-rays done per his request so they can put in a spinal cord nerve stimulation device. I followed up with my neurologist yesterday and he said I see you saw the surgeon for the tumor. My thought was no I saw him for other reasons but I kept it to myself. We talked about how the treatment for my migraines was not working and so he wanted to try one more shot before we try Botox. I asked about the seizures and he said that it’s not epilepsy but a stress response to the pain. I told him what the other doctor said about it being a non-epileptic seizure disorder and he said no there’s no such thing it’s just your bodies stress response to the pain from the migraines. I am so frustrated with this guy. Not only was he late taking me back to the appointment but then rushed me in and out of my appointment and it seemed like he didn’t really wanna listen to anything I had to say. And then to make matters worse my disability was denied
Get a second opinion .
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1 ReactionWith symptoms and problems like those, you need a new set of doctors, hopefully at a university medical center. What you are going through, have gone through, is terrible. Please seek alternative help.
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1 Reactionef0300: Your neurologist is incorrect. My grandson has been diagnosed with non-epileptic seizure disorder. There is such a thing. So your neurosurgeon is correct in this. But, the neurosurgeon is basically telling you that you are non-symptomatic. Have you asked him if it does grow to ten times its current size of 8x8 mm., the point at which he is willing to intervene, what critical structures it may be pressing on/compromising? Based on his answer I would advocate for doing something sooner than later. But, more importantly, I agree with the 2 prior posts from Randy and Dolly, you need to get a second opinion, from a neurosurgeon (skip the neurologist) and hopefully at a university affiliated hospital. You owe it to your son, and yourself, to get the best medical care.
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