Today, I went to a new Neuro Doc. Instead of traveling 2 hours to my last Neuro Doc, I found a new one closer to whre I live. My question to the new Doc was “when can I stop taking anti-seizure meds”. The new Doc said "because of the damaged to your left temperal lobe, you probably will have to continue taking the med for at least 5 years and possibly forever.
Has anyone with left temperal lobe brain damage been told the same by a Doctor. It’s OK if I have to take med from now on, I just wonder to know if anyone else has heard the same!
I’m so sorry, Jeff…My AVM was radiated away…I was told that 2 months ago. I will pray for you, as I always do for AVM friends. I will pray that there will be a day when doctors will find a way to heal you, my friend! Louisa
My AVM was deep in my left temporal lobe, had seizure activity both before and after surgery and have been on meds for it ever since December 2005. My neurologist told me pretty much the exact same thing… We may be able to reduce the levels of the medication,b ut I will probably be on it for life.
louisa,
my surgery was on the right side of my brain but i have been told i will be on siezure meds for life due to the large size of my avm and the scarring it has left to my temprol, frontal parteial and occipital lobes
Hi Alicia,That’s pretty much what that Doctor told me yesterday. But he’s going to check with a CT every year to see of the damage changes. By the way, how are you doing! I so wish I could go to Australia! I saw a fantastic program on TV of the beaches in Australia! Beautiful!
My AVM left side, I choose radiation one time, I do not wish to have any more. Surgery was not the best option because the AVM is deep and could cause more damage affecting my sight and hearing,etc. I took dilintant for two years, it affect my liver so finely I was told to quit taking it. I was told to state I am allergic to dilentant and its family of drugs. I felt very ill on this drug and was dropped to a mimum dose shortly after starting this drug. After I did reseach on my own and found a connection with my gluten allergy and dilentant. I am doing good with out meds but I eat a very simple diet as well; which I bet keeps me in better health all around. From Karen your happy gluten free 90% raw vegan.(-:
Hi Karen, Since my brain bleed, I’ve been on anti-seizure meds. I also was allergic to Dilanten from the start, but then the Docs at MGH put me on Keppra and the allergy stopped. Since I’ve been on an anti-seizure med from the start, I’ve never had a seizure, which is why I ask the doc’s when if ever can I stop taking the med. It confuses me because since I’ve never had a seizure, I wonder if I need to talk the med…but yesterday, the Doctor said yes because I have damage from my brain injury. I wish I could be a a vegan.
My AVM was on my Right temperal lobe/frontal lobe and was completely removed surgically in 1989. I was told at that time that it would be necessary for me to remain on anti-seizure medications for the remainder of my life. I have been taking them for about 25 years already.
Amazing, since 1989? Amazing! I am not that afraid that I will always be on anti-seizure, I just wondered. I have don’t have any side effects at all from the med. I just wonder if I’m going to be able to afford my meds in the long term! Who knows what will happen to the Health Care system?
My husband’s avm is on the left temperal lobe and he too was told even after surgery he will probably be on dillantin for life. He is not impressed because it makes him soooo tired, but better that than doing the floppy chicken!