Diagnosed with Meningioma: Worried about another seizure

Could they just explain that in plain language please?

@karinav4236, I see your first appointment with the neurosurgeon is coming up this week. I thought you might appreciate this information from Mayo Clinic about preparing for your appointment. See the bottom of this page: https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648

How are you feeling about the appointment? Have you started a list of questions?

If my experience is any guide, yes, the seizures once they start will continue. I had several unrecognized seizures before I knew what they were and that I had the meningioma. I continued to have seizures after the surgery until the neurologist got the anti epileptic med’s right. Luckily the current med’s totally control the seizures.

Colleen, thanks you for the information. I only thought about few questions but I will read this before my apt this Tuesday. Thank you so much!

Hi, may I ask you what did you felt/experience when you were having a seizure please? I know everyone is different. I sometimes feel like if I had too much caffeine or my sugar is low and then it goes away. I am not a diabetic (my daughter is a type 1 ) so I know about it. Is like a jittery feeling even though I have coffee twice a day. This feeling is not everyday. Any one else has this feeling? If so, how do you handle it? 🙏 thanks

Two things would always happen with me. 1) some sort of involuntary twitch. The oddest one was when all (and only it) of the left 1/2 of my tongue vibrated. (I have tried to consciously replicate this and can’t do it. ) 2) not being able to breathe until the seizure was over. This was always very scary. And probably led to the panic attack diagnosis. Because of the location of the scar on my brain my left side is generally affected and so I still (after 7 seizure free years) note not totally intentional movements on the left side.

Thank you for letting me know. I pray and wish you all the best! I can’t help feeling overwhelmed at times and anxious. My job is a bit stressful but I am trying to take it easy and think there are others in worst shape then I am and console myself with that. Thank you.

Thank you for your prayers and well wishes. But something struck me in your earlier posts, about caffeine and coffee. Although every case has individual features, and this does not apply to everyone, caffeine is a seizure trigger for many people. It is for me. Even with effective anti seizure med’s, I haven’t drunk coffee for over 7 years. (Yes, I miss it☹️)

methel: I scrolled back on this string of posts but could not see where you indicated why you had a "scar" on your brain. I only ask b/c I had a craniotomy 16 months ago and am now having, probably totally unrelated to my surgery, what I will call vibrations on the left side of my torso. I do remember immediately after my craniotomy being told to watch for very slight signs of a seizure, so slight as even a finger twitching. I was on seizure meds for a month after the surgery. It would seem reasonable that scar tissue could form after brain surgery and if this could be causing my torso vibrations.

The scar on my brain was either caused directly by the meningioma or by the meningioma when it bled (the stroke) or by the emergency surgery which was necessary to save my life. I believe the surgeon was aggressive in getting all of the tumor. And I was started on anti epileptic med’s immediately. So I wonder, but against the odds (My son was told I had a 1 in 10 chance of having a meaningful life after the surgery), I lived. So I’m grateful for the outcome.