Neuropace RNS system

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Ruth

Ruth

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I got my information from http://www.neuropace.com

FDA Grants Premarket Approval (PMA) for the Neuropace, RNS system to treat Medically Refractory Epilepsy.
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I recommend reading Learn More About the Neuropace RNS System.
You will learn how it works, it's side effects and more.

It is placed in the brain.

I do not know what percentage of people with epilepsy, it works on. If someone knows please give me a link. If anyone has had experience with it please let us know.
 
My son was given the Neuropace Neurotransmitter 11 years ago and thanks to God, has not has a seizure since. We are SO grateful to God. He has Temporal Lobe seizures due to a benign brain tumor removed when he was 17. He received the transmitter when he was 27 and is now 38. The years before the transmitter where very tough. Having a teenage son that can't drive make you want to run away from home but we kept praying. No medication ever stopped his seizures. He is on 2 meds now but I don't know what they are. David is a very private person and doesn't talk much about it. But every now and then he does. I found out, through him, he does tak to other people with epilepsy. But he couldn't be on this forum because he would be too busy to answer al the questions I know many will have. But feel free to ask me!
 
You need to know what medications he is on in case he needs to be rushed to the hospital. You are a very loving Mom and I am sure that he appreciates you.

What meds is he on?
 
I have an article I could post showing how the transmitter is placed on the brain but it says I have not been a member long enough to post links. So, go to the Neuropace RNS system and you may be able to see it there. I find it amazing. David finally told me he is also on Depakote and Fubatol. Fubatol made him very ill at first but his body adjusted to it. He did tell me also that he has to have a bone scan because he has been on Depakote for so long.
For so many years, I had to be the one to try to guide David and he understandably resented it. I had to be the one to keep his seizure records to give to the drs. that took his driver's license away from him for 9 years. I had to take him everywhere. Yes, he does have a wonderful Father and we have been married over 40 years. It was up to us but mainly me. My husband traveled a lot but he did a lot of the work. So, since I was the one that had to make him go to the dr., make him take his meds., inform his teachers about his condition, etc., he didn't like me very much for a long time. But I have respected his privacy for years now. He is, after all 38 years old, so it's up to him and his wife to handle things. He carries a card in his wallet and wears a bracelet about his transmitter and medications. And yes, he has been able to drive since the transmitter. He is beginning to see I did what I had to do. He is our only child and he does not know what the stress of all this did to his Father and me. We have never said because none of it is fault. He fought hard to live a normal life yet we had to hold him back in many areas for his and others safety. But we did all we could to make his life as normal as possible.
 
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Yes, I did see how the transmitter is placed on the brain. It is very interesting. It is in the link that I placed in the first post.

My husband and I have been married for 50 years. How old are you? I am 71 years old.
 
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I am 64. We have been married 43 years. He is a good man, not always easy to live with but neither am I.:) This was a real test of our marriage so far. Then my health has failed me pretty badly but he is still here for me. My Father just died. He and Mother were married 65 years.
 
Janie said:
I have an article I could post showing how the transmitter is placed on the brain but it says I have not been a member long enough to post links. So, go to the Neuropace RNS system and you may be able to see it there. I find it amazing. David finally told me he is also on Depakote and Fubatol. Fubatol made him very ill at first but his body adjusted to it.
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Are you sure the medication isn't Felbatol? Long ago, I took Felbatol and it gave me intense migraines, so had to stop taking it. It isn't prescribed that often now, only as a last resort or for those who've tried nearly every med out there.
 
Janie, Neuropace was approved in 2013, and the first Neuropace was implanted in a clinical trial eight years ago. Are you sure you're talking about Neuropace? Maybe you're confusing it with DBS?
 
I'm not sure, Bernard. My son was entered into the Neuropace clinical trial at the Mayo in Jacksonville 11 years ago when he received the RNS. However, he was an adult and was against me having anything to do with it which I understood. He's finally over that (I had to make decisions for him when he was a minor and though he resented it then he now understands). He just had to sign papers saying he understood the FDA had now approved it and his insurance would be responsible now. So, I assumed it had just been approved. I used to be the one that researched day and night for help but now he is 38 and I let go of the reigns a long time ago. I will ask him about when he got it. I remember it as 11 years ago. I'm just thankful God sent us the miracle he has so far. Thank you so much for this site. So many caring people here, especially you.
 
Yes, it probably was Felbatol. He was on so many meds at one time and nothing worked. This made him so ill. It was a previous weight loss med they took off the market when they discovered that 1 in 10,000 people died of liver damage. This is how I remember it. It's been such a long time and my son does not like to talk about it much. I respect his wishes. But he is saying more about it as I don't ask questions anymore. I so wish I coud get him to tak to someone. He never has and didn't want to.
 
Thank you Bernard, on the NeuroPace and guinea pig on page 4 there was someone at the forum who worked on the Neuropace RNS system. His name is ereem on page 4 at the top.

Somehow I missed the thread completely. I like to look for breakthroughs in epilepsy.

Kirsten, Janie knows after all it is her son. The main thing is that it has worked for him. I am glad for Janie and her son.
 
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Yes, I was wrong in my dates....

So sorry....I just talked to my son. This is how I remembered it but it has been shorter then I remembered about the time. I'm thrilled he talked to me about it. He received the RNS in 2006.
kirsten said:
Janie, Neuropace was approved in 2013, and the first Neuropace was implanted in a clinical trial eight years ago. Are you sure you're talking about Neuropace? Maybe you're confusing it with DBS?
Click to expand...
 
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I am bad on dates too. Like they say, time flies or tempo fugit.
 
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