Looking for encouraging feedback-has anyone had a craniotomy for AVM that did NOT result in a long term seizure disorder?

Had a craniotomy for a rupture in my cerebellum and never had any seizures, before or after. Its entirely possible to get lucky and never short out up there. I'm thinking it depends on where your avm is and how deap in your brain. The more scar tissue on the brain, the more likely you are to have electrical interuptions causing seizures.

Wife developed seizures, which led to an ER visit, which led to AVM diagnosis. She had several embolizations, surgery to fix an aneurysm, two proton beam radiations, and finally surgery to remove the remainder of the AVM. [This AVM was first diagnosed about 1991 as 'too big and deep' to treat--told to learn to live with it. Ten yrs later, it was treatable.]

She still takes anti-S meds as followon EEGs show abnormal electrical waves. She stabilized quickly on drugs that controlled her seizures. Our son who had epilepsy (no AVM)went through a whole gamet of drugs, and finally had to have surgery to control the seizures. He too has to continue the meds as he has abnormal EEG. It can be a long and disheartening process to find the right med to control your seizures--what works for one person doesn't for another.

Ron, KS

Thanks Ninibeth- My son has no seizures on the medication but if he can't get off the medicine he can't pursue the career he's been planning since he was 10 years old and as a senior in college will have to figure something else out.

I had my AVM removed in surgery on my top right frontal area in February this year and was told not to drive for 6 months due to possibility of seizures.......back to driving and no seizures to date....i pray for you and your son.........God Bless and all the best

Thanks so much Adrian, your story gives me hope!

Hi Bosco1. I was quite blessed and did not have a problem and was weaned off the drugs many months later. I know from a friend of mine who does have epilepsy that they look for abnormalities on the waves from the EEG. The only advice I can give…do not drink alcohol. It does lower the body’s resistance to seizures. I will be praying for your son!

I have not had a long history of seizures. I did have one, but it was linked to a medication I was taking, not the crainiotomy for my AVM...

Thanks James...I'm glad to hear there are people who had a craniotomy and went on to lead a seizure-free life.

Thanks Ron for the advice, I appreciate it.

My son had a craniotomy for his AVM when he was five years old. Before the surgery he had severe seziures from the age of 1 until he had the surgery at five. After the surgery, he never had another seizure. However, now he is 16 years old and he suffers from severe short term memormy loss, sudden severe back pains and abnorminal bowel. He now has an appt. to test for a spinal AVM. Good luck and my prayers go out to you!

I'm so glad to hear your son did so well with his AVM surgery-it certainly is encouraging...and I will keep him in my thoughts prayers!

Crainiotomy on 7/18/2009 Avm rupture right Temporal
No meds
No Seizures For 2 years /knock on wood !! My neuro took me off meds after I was seizure free for 6 months after the Crani! Didn,t miss it 1 bit, but everyone's different, this was just my doctor and my story!
Nicole

I had only one Grand Mal seizure in June 2011 which lead to discovery of my AVM...I had my Craniotomy on October the 6. 2011! I never had any Seizures after the one in June and I never took any meds for that.

Thanks so much Nicole! My son's dr wanted him on his medicine for 6 months... which will be end of January...So I am praying we will have good news then. I wish you continued success!

Thanks Manux! The more I hear from people that they didnt need anti-seizure medication for the rest of their lives the more hopeful I am that my son will be able to have his old life back,which he so desperately wants. I wish you much success in your recovery!

Hi bosco1!
I had a craniotomy in 2006 and never had a seizure either before or after the surgery. I also didn't have a bleed either. Like I always say though, every AVM is different and there are different circumstances. Like Ron said finding the right anti-s medicine can be a long and tiresome process but it's worth the effort and a good safeguard I would think. I'm driving (although wearing my prism glasses now) so it definitely can be done! But that's just me. Wishing you and your son the best. :) Suzy

Thanks so much Suzy for the words of encouragement, much appreciated

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My son had a large, left medial frontal lobe AVM that ruptured in 4/2008. He had 5 embolizations and 2 craniotomies. His last surgery was in 3/2009 and he has never had a seizure.

Thank you Janice...you've made me feel so much better reading your son's successful experience. I have been worrying 24/7 since all this happened...it gets exhausting after awhile. I couldn't find many postings of people who didnt develop a seizure disorder after their craniotomy but now it seems it's possible. Thanks.