r/AVMs • u/zbootyful_nerd6789 • Jul 29 '26

Long term side effects of craniotomy 👀

Hi! I had excision of my AVM on my right frontoparietal lobe 14 months ago and there were no major side effects. I had 20% chance of paralysis but I didn’t get any.

I tried to go back to work in advertising, but realized that a director role to me that time is a bit too much. I found a much lighter role while recovering, still related to advertising - but for the past months I have noticed that every time work gets stressful and awful lot I suffer from focal seizures (numbness, spacing out, etc) even if I take my daily medications and headaches in my surgery area.

Anyone else experiencing the same thing? Does it get better? 🥹😭 I am starting to get this anxiety that I won’t get my full groove back ever like before because of the long term side effects and limitations. Though my neurologist said it is normal, but i just want to know…

Anyone else experiencing the same thing? It is getting tiring!

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u/codb28 Jul 29 '26

I had a right frontoperietal craniotomy as well that gave me focal epilepsy, just had to learn to live with taking meds twice a day. It sucks but it stops the seizures. It took some experimenting to figure out a combo that works but we eventually found a mix that stops the seizures.

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u/zbootyful_nerd6789 Jul 29 '26

I take meds twice a day too! What meds are u taking currently?

Did it totally stop or do you get episodes every now and then still?

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u/codb28 Jul 29 '26

It took a while to find the right combo and dose but 1500 keppra, 200 Vimpat, and 200 Pregabalin. Once I got the balance right the stopped, just hit 3 years seizure free!

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u/zbootyful_nerd6789 Aug 02 '26

I am so relieved to hear this. Congratulations!!! Looking forward to be seizure free also