NUTS! 8 months since gamma knife and I had a cluster yesterday

jayjay · April 12, 2005, 3:54am

I had gamma knife surgery 8 months ago and I know it takes a long time to show full results. I really thought I was getting something out of it last month. I guess I really have. After the surgery I started having clusters at least twice a month, but before it was once a month. I'm just getting back to the once a month pattern and I made it more than 30 days. Not much, but it's an improvement I guess. I made it 34 days. I was counting the days. That's probebly the wrong thing to do but I've never found a trigger like stress or lack of sleep or anything. After these clusters I get depressed and can't do anything. I'm suprised I'm online now typing this. I don't know if anybody has any experience with gamma knife surgery for epilepsy but if you do I would like to hear a thread from you. Thanks a lot. You all will be in my prayers tonight. Jeff

kayakmom · April 12, 2005, 1:27pm

Jeff I am so sorry you have clustered! I have not seen others here who have been through GAMMA knife surgery. I am wondering if there is a way to find others through your doctor's office? If they would let you post on their bulletin board maybe to connect with others who have been through it? I will do some searching, there might be an on line group just for Gamma knife.

Hang in there. I know it is so frustrating to have things start again. I think seizures in hte first year after traditional surgery do not necessarily mean it is not a success. I know they say keeping meds steady for at least a year is key as well.

I sure hope they can get these clusters to stop. Glad you did come on. Praying for you!

jayjay · April 12, 2005, 4:08pm

Thanks for responding to such a rediculously desperate thread. I'm the first one at this hopital to have this procedure done. I'm at a teaching hospital in Milwaukee but it's not an accepted way of treating TLE at this time. I found one group of people that have 3 members that have had gamma knife over the past few years so it's hard to get much info. It's not very active either. It's hard even getting technical info online if you don't subcribe to these magizines. I really am not going to subscribe for one artical. I take all my meds every day because if I don't I know what happens....I end up in the ER. I'm taking 300mg Dilantin, 500mg Lamictal and 400mg Zonegan a day. I had neurologists that used to accuse me of not taking my meds untill one finally decided that I was intractable. I've had "clusters", my neurologist says that I go into a state of status every time, for years. My neurosurgon when I first saw him said I was lucky. I told him, if I was lucky, I'd be a neurosurgon making as much money as he does. LOL He doesn't have a sense of humor. Last time I saw him I told him I thought he was a very brave man doing what he does, he told me thought I was a very brave man. That's scary!. God bless all and you will be in my prayers. Jeff