Seizures - A Very Unscientific Study

Hi Guys,

I'm in the process of narrowing down my treatment option and in browsing this site I've noticed that many people have similar concerns to me regarding seizures.

I've tried to research some statistics on this and the results vary wildly from 10% to 53%. Most studies have trouble following up with patients long term, or simply only track the first 6 months following treatment.

As this is the largest resource in the world for AVM survivors I feel we've got an opportunity to conduct some (albeit unscientific) polls into AVMs & lasting effects of treatment. I believe this could be a very useful tool for those seeking information following a new AVM diagnosis. Who knows, it could even assist the medical community in gaining a better understanding of AVMs.

As a test I'll focus this Very Unscientific Study on Seizures, to see if it gets much of a response. If it does perhaps we can have other "VUS's" which will at least be able to give new suffers an indication of what they can expect.

I'd appreciate it if people could reply to the following (I've filled in my own answers)

AVM Location (if known): Left Motor Strip.
AVM Size: Around 2cm.
Pre-treatment Seizures: 0.
Treatment Option: Unknown.
Post-treatment seizures: N/A.
Current Seizure Medication: None.
Time on Seizure Medication: N/A.

I'll collate and post the results in a week's time.

AVM Location (if known):2 in the cerebellum.
AVM Size: Around 3mm and the other has been obliterated and it was 1mm.
Pre-treatment Seizures: 0.
Treatment Option: unknown.
Post-treatment seizures: N/A.
Current Seizure Medication: None.
Time on Seizure Medication: N/A.

Hi Joe,

Please know that every case is different after having the AVM surgery. My concern is that getting the results from other AVM's could make you worry more than necessary.

The best result for me was to stay strong and positive.

AVM Location (if known): Right Parietal/Occipital Lobe
AVM Size: Don't know.
Pre-treatment Seizures: Zero.
Treatment Option: N/A.
Post-treatment seizures: One, Grand Mal.
Current Seizure Medication: None.
Time on Seizure Medication: Keppra.

Location:Left Frontal lobe

Size: 5.6 cm

Pretreatment seizures: Looking back I think I had already had at least one.
Treatment options: embolization x 2 and LINAC radiation 2 treatments 6 months apart
Post treatment seizures: 5 total that I am sure we’re seizures. 3 were grand mal. Last one had 3 back to back.
Current medications: Lamictal 200mg twice a day and Keppra 1500mg twice a day
Currently taking medications to control them.