Neuro Pace and guinea pig

erem

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s10 and Janie,

I was a scientist/engineer at NeuroPace for 4 years. It was my first job out of college. In that small group of multi-talented individuals, I learned the meaning of teamwork and poured my heart into the device you're using right now.

To hear how this, the only meaningful work of my adulthood, has directly or indirectly improved your lives hits me somewhere very emotional and very raw. It's like Christmas came early.

I'm sure any current or former NeuroPace employee that runs across this thread would agree.

Thank you so much and Happy Holidays
Erem
 
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News on my implant lately has been good. Over the past year I have had massive improvements, the RNS implant helped some, but the doctors also put me back on Gabitril which worked for me in the past and was the med that got me to go seizure free for years. They are working my level up on it and have had good news with it. My epileptologist is actually wondering why in the world my old neurologist ever took me off of it. I have even been able to stop having a bottle of Ativan around for cluster seizures. My seizures have gone from upwards of 5 a day to now 1 every 1-2 weeks.

The only bad thing is that with the decrease in seizure frequency, I have a bad habit of forgetting to interrogate the data and send it to neuropace.

Another couple of things that I think have helped is that I am no longer working due to the company I worked for firing me due to absence caused by my seizures, which has resulted in alot less stress, and I have gotten really into bicycling and weightlifting, biking 10 miles a day 5 days a week and lifting 3 times a day. A recommendation from the epilepsy center, its been great too, lost 30 lbs since March.

We really think that the RNS has helped alot and has definitely helped pinpoint the seizures, realizing that most of them are nocturnal and the ones I have now are always nocturnal. Great news on that end, If I can keep it up I may be able to drive soon.

I can't believe how much the exercise has really helped with everything overall too. I have been getting my confidence back, less depressed, and finally more willing to get out among the public. Definitely worth the cost at a fitness center.

All I can say is yay for neuropace, though the Airport next week is gonna be fun as they won't be able to send me through the metal detector.
 

neilB

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Hi s10,

Well look at it this way, you're gonna find out if the airport security is REALLY paying attention! Glad to see you doing better!
 

Bernard

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Fantastic that your seizure control has improved so much s10. Sounds like you have a lot of changes for the better happening. :mrt:
 
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Well, I have officially started into the long term treatment as the short term clinical trial is over for me as I have started year 3 with the implant. According to the feedback from the system, there has been less activity, meaning that the implant has not had to work as hard with the seizures. However, over the last month my seizure frequency increased a bit.

Not sure what to thing as the info from the machine doesn't always seem to matter, as a seizure is a seizure and no matter what is no fun at all. I am trying to keep positive on it, but still pretty worried.
 
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Well about 6 months into the long term portion of the clinical trials. I have had word with the doctors as I have been feeling like my seizures have gone way down, and they agreed that they are showing that too. I have still been keeping a diary and all seizures have been nocturnal over this past time, I only seem to be having about 1 a month now and the most recent one was due to a missed dose of medication. The other weird thing I get anymore is this feeling saying I'm going to have a seizure while I am laying in bed, this happens on those nights that I have a seizure.

This has sure been making things hopeful, finally I am able to try to work on other issues in my life with less worry.
 

greenbean

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When will neuropace be available

My wife's doctor has mentioned this device several times. I thought the device might become available late 2011. However, I have not seen any recent news regarding the device. Is there any word on the status of the device?

Thanks.
 

kyrissa

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My neurologist and I are looking at this treatment. I have been on several different meds and have a VNS implanted. My seizures are still not under control. The RNS is now approved by the FDA. I am excited about it. My neurologist has told me that with technology, it has really improved with treatment. Anyone out there willing to share with me their experience with it?
 

Janie

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My son was one of the first ones to receive the RNS 11 years ago and so far, it has been a gift from God. We are so thankful to him and to the wonderful people at Neuropace. He has not had a seizure for 11 years so far thanks to God. The results were immediate. He has had the battery replaced once since the surgery.
David's epilepsy came from a benign brain tumor remove when he was 17 years old. Life was unbelievably hard up until then. Having a teenage boy who can't drive makes you want to run away from home. He's a wonderful adult who holds down a job after being fired from so many because of the effects of his temporal lobe seizures.
I am really concerned now that his insurance has to pay for it. If he loses his job, I hope he can find another one with insurance. I am so worried.
 

Ruth

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Janie, I never read this thread before. There are more successes. I am so excited about it. erem at the top of this page even worked with it.

I learned a lot here. I am glad that Bernard directed us here.
 

Janie

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I did make one mistake

David received his transmitter in 2006. I don't know why I remember it as 11 years ago. I talked to him tonight and he told me he has been seizure free 8 years, not 11. But eight years so far is just as good to me. He's 38 and it's been a very long time since I have been as involved in the knowledge of all of it. But I know I am proud of my son and so thankful to God and Neuropace.
 
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