On June 15, I was 5 years post op on a left frontal lobe AVM. The only way that it was found was a grand mal seizure. I had the one seizure and nothing else. After they removed the AVM, I had absolutely no complications in the hospital or at home. Fast forward over 5 years and Thursday I was in a bus with a group of men and had a grand mal seizure that lasted over 5 minutes. Both CT scan and CT scan with contrast were negative. Next step is MRI w and W/out contrast. Anyone had a similar situation so long post op?

Hi Marshall, wow - that must’ve been a shock after such a long time seizure and AVM free. I’m no doctor but if your situ is anything like my husband’s, the seizure is as a result of scar tissue from AVM removal surgery. Like you, we had no idea the AVM existed until it a fit occurred. Sadly, my husband’s AVM bled but he made a full recovery. One year down the line, thinking we were in the clear, from nowhere a seizure happened! Turns out scar tissue forms then hardens and at that latter stage can cause rogue neuro signals to become full blown tonic clonic convulsions. So, after more scans to check no further issues, it’s back on anti-seizure meds and back to normal. A shock, but a manageable one. Sounds like you’ve got all the right professionals doing the right things to establish what’s going on. Got everything crossed for positive news and a straight forward explanation. Keep ya chin up .x.


Sorry to hear about your seizure - that must have been tough after such a long time of being complication free!

I was told after a crainiotomy which completely obliterated a right frontal parietal AVM that I would need to take dilanton (sp?), an anti seizure medication, for the rest of my life to guard against possible seizures. This was 20 years ago, so things may have changed at this point, but it's worth noting that I was told I would need to take anti seizure meds for the rest of my life.

I never had a seizure, and it was the one year anniversary of my AVM rupturing. Since I never had any seizures, I felt like the anti-seizure meds were purely preventive. I weaned off keppra following my doctor’s advice. Three days after I was Keppra free, I was hit with my first (and only) tonic-clonic seizure.
Even though I only had radiosurgery, my rupture and stroke were severe enough to cause scar tissue in my brain. Looks like I may be on anti-seizure meds for life, too.

I found some old discussions which might interest you…

Fraid ive been on anti seizure meds for 35 years now with seizure amounts and types varying over the years but was told it was due to scar tissue from the initial bleed, then possibly damage the radiosurgery can also do when you have it twice. My seizures were worse for a few years after this. For the past 2 years it has eased to 4 per month mostly night time but i have msk problems nowafter them and tmj trouble. Im upping my topomax to try to get rid of them or at least cut them down so lets hope for the best. Seizures are funny things and affected by so many lifestyle … and now ive lost the word thats the topomax its so frustrating.