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If you have an rns, how long did it take for it to start working good and does it stop most of your seizures?
@A MyEpilepsyTeam Member
I’d say it maybe took a year. When I first got it the power was on low but slowly by slowly the doctors kept raising the power. And like I said I always had 1 or 2 seizures a month but now I see more 1 seizure months. If you have more seizures you’ll probably see a bigger difference.
@A MyEpilepsyTeam Member
That sounds good but I don’t think my parents would want me to have many other holes in my head except the RNS because I have a permanent shunt that I’ve had sine I was 1 1/2 years old. I would take the risk of the RNS but my parents are just worrisome from the E. coli I got from the replacement surgery 14 years ago.
I have a couple seizures or so a week. I had 4 this morning. I really want to have the rns but my parents are afraid because I have had surgery at that spot in my head multiple times in my life and I’m almost 27. They’re afraid because the last time I had my shunt replaced, I got E. coli from the operation. I just want to try what I think might help better internally. They might try it but if the Dr says it’s good.
How long did it take for it to lower your seizures?
@A MyEpilepsyTeam Member
I do have an RNS. It worked good recording my seizures from day 1. I’ve always been one who has 1 or 2 seizures per month and I’m still that way. I’d say if you have more seizures it would reduce yours.
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