Hello and looking at Neuro Pace

[vtsammy]

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 neurologist'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 neurologist 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 neurologist 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.

Sam

[Birdbomb]

Welcome Sam

There are risks with everything. Neuropace is the newest implant on the market. Even though it's still in the testing phases, I am impressed with their studies. (notice the ad on the top of the page?)

Speaking from experiance with VNS, I think the neuropace is a much better devise. The electrodes are placed directly on the seizure focus, unlike the VNS which has coils wrapped around the vagus nerve, stimulation travels in BOTH directions, up to the brain and down into the body, more often than not, creating some very unpleasent side effects.

Bernard may have more info on others who are implanted.

[vtsammy]

Thanks Birdbomb. I'm meeting w/ the neurologist next week, and we'll see what he has to say. Anybody else have any input?

Sam

[Bernard]

Hi Sam, welcome to the forum.

There is a banner ad in the rotation at the top of the forums that will take you to the neuropace/RNS clinical trial web site.

I also wrote a little bit about it here:

http://www.coping-with-epilepsy.com/...eurostimulator

[POSITIVEPERSON]

Hi Sam: I do not know anything about the inplant. But I wanted to welcome you to the board and wish you the best of luck . I have epilepsy 41 yrs since I am 11 yrs old I am going on 52 yrs old . I have been taking homepathy for the past 2 yrs and added the Gard diet a month ago so I could get off my what was left of my anti-epileptic drugs. Have any ques?
Will be glad to answer your questions.
Riva

[vtsammy]

Hi Positiveperson. What kind of diet did you say that you are on? And are you no longer taking any anti-epileptic drug's? Thanks everybody for making me feel so welcome.

[POSITIVEPERSON]

I am on the Gard diet, you can go to this website and it explains it www.dogtorj.tripod.com/id31.html
Nope,no more meds. I ran out had to find other options!!!

STARTED HOMEOPATHY 2 YRS AGO AND FINISHED OFF WITH THE GARD DIET.

RIVA

[Bernard]

Sam, have a look at the chart mentioned in my signature. There are several "seizure control" diets listed there (among other things your neurologist may never have mentioned).

[brain]

Sam!

Glad to have you here! When I first
"Heard the name of NEUROPACE", at
first ...

(Don't laugh folks - I'm telling the truth)



I thought it was a name of a Car/SUV or
a new TRUCK ~ as it somewhat brought
me memories of Dodge's NEON car. Don't
ask why ... and then I thought of the old
PACER car ...



Then I found out it was an innovation type
like a VNS for the brain!



Then I went off to do a research and it
almost correlates to the RNS. I've been
reading up on it but hadn't followed up too
closely to warrant sufficient enough info.