Hi Susan, to answer your question, no. I had no idea that there would even be any scar tissue on my brain. I didn’t learn of it until i had the 2 seizures nearly a year after my crani. Apparently there is a lot in there, my crani took 7 hours becuase of the size, initialy thought to be golf ball sized but turned out to be bigger. that is the cuase of amount scar tissue. For a long time i wished i went the route of gamma knife. but i was just 28, with a wife and 2 kids and wanted this nightmare over as soon as possible, the embos, and crani was the quickest way to get rid of it. I don’t have any regrets now, i feel iv’e made the correct decision. Out of curiousity, how does Gabapentin agree with you? I see my neurologist on oct 19th and i would like to limit my medications down to just 1, keppra still makes me loopy, and coupled with the topomax made it worse at first. iv’e just gotten used to it. You said your’s on the temporal lobe also? it seems we have a lot in common. how many seizures have you had post-op? I hope the Gabapentin is working good for you, and wish the best for you!
Rick, Actually my AVM was in the front left hand side of my forehead. In answer to your question about Gabapentin, I feel much better taking this. My dosage was cut down to 100mg only because I had a 1 partial seizuure the night this whole ordeal happened.
I remembered how bad I felt on Keppra, I felt like I was o zoned all the time, wanted the horrible nightmare over. I have two teenage boys 19 and 16 I had to care for. Felt like I was just spaced out watching TV.
Im glad things have gotten much better for you, I hope your neurologist can help you find more relief. The doctors always act like they are not sure what to do, almost like they are afraid to make changes. Let me know what your neurologist suggest you to do. I wish the best for you also!
Hi Allen, I was wondering if you have EEG’s done every so often. My “Seizures” are called Micro. I was having these without personally knowing. Dialantin is what I’m taking for the past 9 years even though I had the AVM back in 1977.
Hi. I hope you don’t mind me jumping in.
I have read many people feel dragged out while on Keppra. I feel like I am wired, all the time, then I crash. If I don’t sleep when my body tells me too I am guaranteed to have a seizure. It also makes me very thirsty but I am rarely ever hungry.
So many things are happening at the same time (diagnosis, testing, Gamma, seizures, medication, losing licence and then job) I never know if what I’m feeling is med related or side effects from the AVM/Gamma/Seizures or if I am just adjusting to my “new normal”.
Hi There!!!
I have EEG about ones a year. The result is still the same. A spike> I was told It will never get better or go away. The check was to only find out the worse. I think I have the same Micro. I was told it is called mild seizures. Is it the same? I get this during dizzy/tired spells. Sometimes, I was knocked out for hours and felt it was only minutes. When i wake up my body would hurt and at times I bit my tongue. After surgery I was on Dilantine( Had bad reaction) then went to Kepra( after about 6 months, Had growing side effects) Then went to Topomax( worse Side effects–end up in disbility time off due to the effects. Finally Lyrica was the one that worked better. Gran mal is what I am worried about. Would this kill me one day when I do get them?
Sorry it has taken me so long to reply, I don't think you are going to have a Grand mal. The meds keep me from forgetting what i just said. Took me 14 years to realize
I was having them. A little frustrating to find out after all the time went by. I hope you have had inprovments since Oct. I'll check the web site a little better.
Rick
i'm still taking meds although i've had a craniotomy in august 2008. so you have to be patient and play the game by doctors rules...i'd rather take meds than have a seizure. For me it works. I've been taking meds for 17 years now, to avoid seizures, 15 and a half prior to the massive bleeding which occurred to me, the rest since. it has not work perfectly before, but now the mix tegretol/keppra seems to work...
I know it doesn't help...
Olivier
Hi all, my oh my, reading this and the other comments has stirred up panick in me, because my Gabapentin was recently lowered from 3600mg daily to 1800mg. My neurologist wants to do an EEG on me because of my "memory issues" and check for seizure activity. She also told me not to drive on these meds, but I do, for short distances thinking "I feel ok, what could go wrong?" and now I cant help but think what if I have a seizure? Even though I havent had any (cross my fingers) pre or post-surgery. And what happens if Im alone or worse, babysitting a kid, as usual?
I PRAY THAT WE ALL LIVE LIFE TO THE BEST WE CAN AROUND LOVED ONES...GOD BLESS YOU GUYS. I TRULY FEEL THE STRUGGLE.
I wonder also if alone. What would happen if I was even walking in a crowded place? If I get a seizure would anyone help me get to the hospital? I feel the same way.