Hello All. My name is Sam and I just wanted to share and hopefully get some opinions and feedback from all of you. I was diagnosed w/ epilepsy at at 15 (I'm 28 now). I first head a seizure at at 2 and didn't have another seizure until 15. I saw about 4 different neuro's and they would all tell me the same story "that I was a healthy young man and they didn't know where the seizures were coming from". It took me some searching before I found a neuro at John Hopkins Univ. and we found that my seizures were coming from a scar tissue in my brain. I was first on dilantin until about age 20, and then my neuro told me that my body grew a tolerance for dilantin so they had to try a variety of other drugs. Since then I have been on 5 or 6 other medications. And combination of the same medications as well. I am currently taking 3000 mg of keppra, 400 mg of lamictal and 600 mg of lyrica daily. I was having avg. of about 1 seizure per week. The scary thing is that most of the times I have seizures I don't know they are occurring. When I started having seizures at 15 I was having grand mal seizures when asleep, but now I am having petite mal seizures while I am awake. It's scary because they can happen at anytime. But to make a long story short, I had brain surgery at George Washington University on 9/14 in which they put a titanium grid on my head. On the 9/15 they observed that my seizures were actually coming from the back of my brain where the memory and speech comes from, and then the seizures would spread across to the front of the brain. The doctors felt it would be too dangerous to remove anything from that part of the brain so they just stapled me back up 2 days later on 9/14. They suggested a Neuropace and said that I would be a great candidate for it. Has anybody heard or have had this device installed in their brain? I know this device is still going through the early stages, and although I hear stories of how there had been great results, it is still new and risky. Any thoughts? Thanks for hearing out my story and I would greatly appreciate any feedback. God bless.
Hi Stan, I had never heard of Neuropace before, but I ******d it and came up with some interesting facts. If you are close to a university participating in the study it may be something worth checking into. Or is that where you had your test done? There is a list of participating universities on their web site.
I have a VNS implant that would have to be turned off and removed to participate in a study, so between that and the fact the closest university is about 350 miles away it would not be possible for me to participate.
It would be interesting to do so tho, as I have several kinds of seiz. and have never had an abnormal EEG or MRI.
Goodluck and let us know if you find anymore out aout it.