Hello all. I had an AVM surgically removed in February 2017 from left temporal lobe. I had two partial seizures before surgery but wasn’t on any meds. My neurosurgeon put me on Keppra after but I had an allergic reaction so he took me off of it and didn’t think I needed anything else since I wasn’t having seizures. Now I am seeing a new neurologist and he wants me on Topamax daily because he thinks I’m at high risk for seizures. So my question is what is everyone else’s experience with seizures post surgery? Do I really need to be on the meds even though I haven’t experienced any seizures post surgery? Thanks for the feedback!
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I am not a doctor but as far as I know Seizure meds are a necessity. I take 2500 mg of Keppra a day and I’ve only had one seizure. That seizure caused a bleed which caused right side numbness and some thought process challenges. If Topamax will reduce seizure risk without causing allergic reactions you should definitely follow what the doctor says. A seizure followed by a bleed can be truly devastating. I didn’t know Topamax did that. My husband takes it for nerve pain in his knee and so far no side effects.
I will keep you in my thoughts and prayers, God Bless.
-Lorna
Thank you for your feedback and your prayers! 
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I was put on Dilantin after my surgery but was switched to keppra as my Liver didnt like Dilantin.
I had one moderate seizure and still get partial simple seizures if I get over heated or dehydrated.
neurologist thinks I will probably be on anti-seuzure meds the rest of my life due to the amount of scarring on my brain
Sorry I can’t help with the post craniotomy question but I’ve just been given the options for my left temporal lobe AVM. Do you mind me asking if you had any other symptoms other than seizures pre or post surgery? Thanks, Sarah
Thanks for your feedback Mike! Yeah my Dr think I should stay on it indefinitely as a preventative.
Not a problem- I had migraines pre surgery probably avg of twice a month and then the AVM began hemorrhaging which caused the partial seizures. Post surgery I’ve had one migraine over four months so that’s good. General post surgical stuff like headaches (from the craniotomy), fatigue, dizziness, and sensory sensitivity was pretty severe the first couple months but as my body has healed that’s all gotten better. That all takes 6months-1year to feel completely back to normal. It all sounds scary but my surgeon explained that it’s safer to get it removed than to keep it. Feel free to ask any other questions, I know it can seem overwhelming.
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Thank you. I have an angiogram in 4-6 weeks and then have the options of gamma knife or surgery. I’m hoping I don’t have to choose as finding that the most difficult part. I’m leaning towards surgery with the thought ‘get it out as quickly as you can. If I go the radiation route and it doesn’t work I’m back to square one. However, the surgery obviously carries bigger risks’. I hate all of this!!!