Diagnosed with Meningioma: Worried about another seizure

Posted by karinav4236 @karinav4236, Jan 19 7:00pm

Hi, I am 55 yrs old and was just diagnosed with Meningioma. I am scared. On 12/12/24 I was at work and felt very tired, had slurred speech and left side shifted down. All went back to normal within 15 min. I had a CT scan and then an MRI with and w/o contrast on 1/12/25. I have had no issues since 12/12/24. From time to time, I do feel like I am going to fall feeling but I don’t. It is a very strange feeling. I am going to see a neurosurgeon on 2/4 for the first time. I will be traveling to Europe on 2/11 for 10 days. Anyone have any suggestions? I get scared that I am going to have another seizure episode. Thanks

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Colleen Young, Connect Director | @colleenyoung | Feb 3 4:15pm

In reply to @radmom "Could they just explain that in plain language please?" + (show)

I hear you, @radmom. Plain language on a scan report wold be helpful. Getting the medical-ese version before meeting with the doctor can be anxiety-inducing.

Are you dealing with a meningioma?

radmom | @radmom | Feb 3 5:33pm

In reply to @colleenyoung "I hear you, @radmom. Plain language on a scan report wold be helpful. Getting the medical-ese..." + (show)

Yes. Had stereotactic radiation a few years ago but have had debilitating headaches/dizziness afterwards that they keep telling me are not related. Never had them previously so I must believe they are related. Seeing a neurologist tomorrow hoping for some answers.

karinav4236 | @karinav4236 | Feb 4 3:07am

In reply to @radmom "Yes. Had stereotactic radiation a few years ago but have had debilitating headaches/dizziness afterwards that they..." + (show)

Good luck! Hope you feel better soon!

karinav4236 | @karinav4236 | Feb 4 9:21pm

In reply to @colleenyoung "@karinav4236, I see your first appointment with the neurosurgeon is coming up this week. I thought..." + (show)

Hello Colleen, I went to my first appointment with a neurosurgeon today regarding meningioma diagnosis. I spent about 15 min with Dr, was hoping for more since I had a handful of questions. I fell rushed through the appointment the bottom line, he wants to see me in a year order a follow-up MRI for my next year appointment and he added the following notes benign calcified - unlikely to
grow
PCP for Ca index - to assess
for coronary Ca deposits.
I think a year is a very long time to wait. I would like to see a neurologist since he stated my slur speech and face dropping on my right side episode was not related to meningioma diagnosis. My MRI shows no TIA or mini stroke incident.

thanhphosaigon | @thanhphosaigon | Feb 5 11:51pm

Hi, I am 73 years old, have meningioma at least 8 or 10 years ago, at first, I was very scare too, I did brain MRI w/wt. die every 6 months, then every year after that, and for the last 6 years it once every 2 years.
My tumor stays the same, no increase or decrease in size.
Sometimes I have headache, asked my PMC, he said headache have nothing to do with meningioma, just got MRI 6 months ago, another 18 months to go.
I am told lots of peoples walk around with this and don't know it.
This is my experience; hope it help you.

karinav4236 | @karinav4236 | Feb 6 3:23am

In reply to @thanhphosaigon "Hi, I am 73 years old, have meningioma at least 8 or 10 years ago, at..." + (show)

Hi, thank you for letting me know how you feel with this condition. I read headaches are associated with this condition. I woke up with one today. Also been working a lot f hours this week. 😞Best of luck.

Colleen Young, Connect Director | @colleenyoung | Feb 17 1:49pm

In reply to @karinav4236 "Hello Colleen, I went to my first appointment with a neurosurgeon today regarding meningioma diagnosis. I..." + (show)

@karinav4236, I'm sorrry to hear that you felt rushed through the appointment. You were so well prepared with questions, too. It's not uncommon for follow-up to be in 12 months, especially for slow-growing meningiomas. Your neurosurgeon noted that yours is the type that is unlikely to grow. That's when they weigh the risks of additional and potentially unnecessary imaging studies to the brain, not to mention the costs.

It sounds like the neurosurgeon didn't have the time to explain why 12 months was the recommended time frame in your case and you didn't have a chance to ask questions about it.

Hopefully you can get the answers/explanations you deserve and that will put you at ease and give you the confidence one needs in their treatment and follow-up plans.

Are you able to ask questions on a patient portal?

kris1970 | @kris1970 | Feb 18 10:28pm

In reply to @karinav4236 "Hello Colleen, I went to my first appointment with a neurosurgeon today regarding meningioma diagnosis. I..." + (show)

Well that was how I found I had a tumor on the right side of my head, it effected the left side of my face exactly as you describe here. My pcp diagnosed a stroke but I went to a Neurosurgeon who explained it was a seizure caused by the 6 cm meningioma tumor pushing on my brain. I had the craniotomy and Dr said he believed he was able to remove it all. I am on the once a year mri scan plan now and I will be headed back for my 2 year post op scan and Dr appointment coming up soon. I wouldn’t be scared of having it removed. It wasn’t bad at all and recovery was relatively easy and I was back to work in 2 months. Not saying there isn’t some weirdness with the immediate post surgery things like hearing noise and sounds of people talking kind of robotic voices and sounding like you’re in a tunnel. I did also loose my sense of taste oddly enough. The only thing that tasted normal was marinara sauce and chocolate. Everything else either had no taste or it was so far off from normal.