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Old 10-07-2010, 02:18 PM #11
shawn33 shawn33 is offline
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Join Date: Dec 2007
Location: Pasadena, California
Posts: 48
15 yr Member
shawn33 shawn33 is offline
Junior Member
 
Join Date: Dec 2007
Location: Pasadena, California
Posts: 48
15 yr Member
Default the neuropace device

Hi there, the neuropace device, are they talking about the Responsive NeuroStimulator (RNS)? If so let me know, I've had it for 4 years, and I can give you some pretty good info on it.
How is the Vimpat working for you? I have a friend that has severe epilepsy just like me, and for the past 20 years this is the first med that has ever made her seizure free for over a year now. So I'm going to ask my epi about starting it, and hope and pray it will help me like it has her.

Quote:
Originally Posted by Porkette View Post
Hi Folks,

I just saw my new Epi today and I was very pleased with her my former Epi retired. I've been taking keppra for a yr. now and it has stopped the clonic and complex partial sz. but it increased my absence sz. to over 100 more than last yr. so my new Epi has put me on vimpat and has taken me off the keppra.
I'm also looking into having more brain surgery done. I had a veeg done this past April and now they have found 3 different areas that are triggering sz. for me so the only type of surgery that might work in reducing or stopping my sz. is a neuropace device that will stop the sz. in 2 areas of my brain. I have to see my neurosurgeon and get things going and hopefully I will be able to have surgery soon. Here's wishing you well and May God Bless You!

Sue
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Old 10-07-2010, 03:22 PM #12
Porkette Porkette is offline
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Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Porkette Porkette is offline
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Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Default

Hi Shawn,

The vimpat was working good for me but since the season has changed and it's fall I have seen an increase in my seizures but that's nothing new every yr. I have more sz. in the fall an winter.

You are correct I may be getting an RNS for my seizures. What I'm concerned about is how I've read that the RNS can make a persons seizures worse and I sure don't need that to happen. They have now found 3 different areas in my brain that are causing my seizures and I was told that with the RNS it could stop the seizures from coming in 2 different areas.

The vimpat has very little side effect but you do have to have blood tests done often to check your liver and also have a CBC (complete blood count).

I wish you and your friend the best of luck and thank you so much for sharing the info. about the RNS. May God Bless You!

Sue
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Old 01-09-2011, 08:03 PM #13
shawn33 shawn33 is offline
Junior Member
 
Join Date: Dec 2007
Location: Pasadena, California
Posts: 48
15 yr Member
shawn33 shawn33 is offline
Junior Member
 
Join Date: Dec 2007
Location: Pasadena, California
Posts: 48
15 yr Member
Default the new neuropace

I have the new Neuropace device it's the Responsive NeuroStimulator (RNS). It's helped me ALOT more than the VNS ever did!! It hasn't stopped my seizures, but it makes it where during the total confusion, I'm not all that confused. I can think my way through it some and not do anything stupid most of the time. The only side affect is depending on what part of the brain the wires are implanted. You might get a tiny flashing light in one of your eyes, or a little blurred vision or something. That's how it goes for me since the wires are implanted into the left temporal lobe.
Sincerely
Shawn

Quote:
Originally Posted by Porkette View Post
Hi Folks,

I just saw my new Epi today and I was very pleased with her my former Epi retired. I've been taking keppra for a yr. now and it has stopped the clonic and complex partial sz. but it increased my absence sz. to over 100 more than last yr. so my new Epi has put me on vimpat and has taken me off the keppra.
I'm also looking into having more brain surgery done. I had a veeg done this past April and now they have found 3 different areas that are triggering sz. for me so the only type of surgery that might work in reducing or stopping my sz. is a neuropace device that will stop the sz. in 2 areas of my brain. I have to see my neurosurgeon and get things going and hopefully I will be able to have surgery soon. Here's wishing you well and May God Bless You!

Sue
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