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Neuropace

Does anyone know anything about the new device called the neuropace? I know it is like a pacemaker of the heart; it shocks your brain when it sees the abnormal brain waves. But other than that, does anyone know anything else on it? My doc thinks I have bilateral TLE; he is not exactly sure yet. I still have to have some more tests done to know exactly. My doc told me this may be an option to me. He doesn't really know though. But anyways, any help will be great.

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Where do you go for all of

Where do you go for all of your doctors ?

Re: Neuropace

Hello,

      During a MRI the doctors found out that my siezues were coming from both the right and left sides of my brain. They said if the siezures were coming from only one side operation could have been. Their for I went along with the Neuropace testing.

Re: Neuropace

I am the primary investigator of the RNS System Pivotal Clinical Investigation at California Pacific Medical Center. Representatives of NeuroPace notified me of your post so I could share more information with you about the device.

The RNS System is a new device being investigated as a treatment option for people with epilepsy who experience un controlled seizures and do not respond well to medication. This novel therapeutic device is designed to detect abnormal electrical activity in the brain and then deliver small amounts of electrical stimulation to suppress the abnormal activity before any seizure symptoms occur. So far, the therapeutic results are promising and the side-effect profile has been excellent, i.e. few side-effects. To find out if you are a candidate for the procedure and to learn more about the device, you can call 1-866-904-6630 or visit www.seizurestudy.com. You can also go to Living with Epilepsy (http://scott-lwe.blogspot.com/) to find an informal interview with me about the technology. I believe this technology has great potential and with 28 trial sites across the country, I would recommend you looking into it further to determine if it is a good option for you.

Thank you for your response.

Thank you for your response. My neurologist is Dr. Faught at the University of Alabama at Birmingham (aka UAB). They are participating in this study. I do have one question. Is it abnormal that you brain has to have both sides to think? I mean, my doc called me back with my WADA results, and he told me that my left side is my dominant side, but if they do remove my RTL, I will lose my visual memory. By this, I guess this means that temporal lobectomy is out of the picture. I read your website and you spoke about depth electrodes. My first VEEG showed that I have bilateral temporal lobe epilepsy. Dr. Paige (the neurologist that is doing all the studies on this device) spoke with me about this device when I had my VEEG. But, Dr. Faught still thinks my seizures are coming from one side. He spoke about doing depth electrodes (at one point, depending on what my WADA test showed). Since my WADA came back like that, do you think they may still do depth electrodes to see where exactly my seizures come from (to see if I am a candidate)? I am allergic to five seizure meds. I am currently on 1025mg Lamictal a day and 2000mg Keppra a day. I still have some seizures. I am ready for some answers. These seizures are ruining my life. Any other help will be GREAT. And thanks again for the response.

Re: Thank you for your response.

Great questions, but not ones we can answer here. Figuring out if someone is a candidate for surgery is very individualized. It's like putting pieces of a puzzle together as the answer, and even the options of what tests should be done, depends on all the test results. Sometimes conflicting opinions are gotten. It helps to sit down with the treating epilepsy specialist and go over all test results and options. Then you and your family need to think about them in relation to your goals. Then if you aren't sure, get a second opinion and do the same thing. The answer can be made only by you though!
Good luck!
Epi_help
Resource Specialist

Re: Thank you for your response.

Hi pan,

University of Alabama is no longer participating in the study. Investigational sites closest to University of Alabama include Mayo Jacksonville, (FL), University of Florida at Gainesville (FL), Baylor (Houston, TX) and Medical College of Georgia (Augusta GA).

Although neurologists understand where specific functions are located within the brain, this can vary somewhat from person to person. Memory ability is located in several areas of the brain, depending on the memory function. Verbal memory (memory for words) is usually mostly on the left side of the brain (the left temporal lobe) and visual-spatial memory (memory for patterns and directions) is usually located mostly in the right temporal lobe. The WADA test allows the physician to see if removal of either of the temporal lobes would carry a risk for problems with verbal or visual-spatial memory.

It is sometimes difficult to determine whether seizures are coming from one or both temporal lobes. Your doctors are doing very sophisticated testing to identify where your seizures are coming from and also to understand whether a surgery could be performed successfully. Take this list of questions to your doctor. He can review each of your test results with you so that you better understand what the doctors are thinking about your seizure onset location and the risks of an epilepsy surgery.

Re: Re: Neuropace

Hello All,

This is mental! I've been trying to devise a device like this and have a few diagrams scribbled down. Unfortunately I do not have the knowledge or expertese to start looking into it. My idea was to have a micro-EEG implanted into a focal area, which connected to a VNS type device to stimulate the focal area ONLY and stop spread before it became even noticable to the patient, a very quick response time required. Is this what you are doing? If so I want one. The other idea I had was simelar but slightly different and inspired by the principle of taking a benzodiazapine PO when an aura is detected. This would administer a very small dose of such a drug into the artery supplying the focal area only. I saw this as being more difficult as where is the drug stored? is it possible to activate an unreactive form of the drug in vivo? This may well be a stupid questioin. I thought either of these would be far more effective and drastic and with much less adverse effects than medicationi or surgery. I had an image of me working to invent this into my 50s but now I don't have to. Please reply to this as I am so excited now!!!!!!!!!!

Re: Neuropace

While research on this device may seem promising, please look into it carefully and make informed decisions. It is available as a research study only at this time. It often helps to talk to people who have had it done, both those who found it helpful and those who did not.
Take care,
Epi_help

Re: Neuropace

Pan:

First, best of luck with your decision. I know it’s difficult to assess the options and, especially when a treatment is brand new, to make a well-informed decision.

My son, Gabe, had the RNS surgery in February of 2005 in New York. He was 22 at the time, and suffered from complex partial seizures. Medications had controlled his generalized seizures, but the complex partials showed little response.

After in-patient VEEG testing, two focal points were identified – one in each hemisphere. Since the surgery, honestly, it has appeared that most – and possibly all – of Gabe’s seizures originate in the left hemisphere. But, there is rapid involvement of the right hemisphere as well.

Gabe has an electrode implanted in the left hemisphere, within the hippocampus, and a subdural strip implanted in the right hemisphere, just beneath the occipital lobe. As I’m sure you’re aware, both the electrode and the strip contain four contact points, to which the RNS delivers its electrical charges.

Gabe was among the first 35 people to have this transplant, but was still in the Phase II study. As a result, he was “blinded” for the first four months. That is, he did not know if the device was active or not. It was, but… It was also malfunctioning – there was an early software glitch – and, as a result, it often turned itself off. At one point, the RNS turned itself off for a full two weeks.

So, early results were, honestly, quite disappointing. It was a difficult decision and we really didn’t see much practical improvement in those early months. But…

The real strength of this device is its ability to be fine-tuned to each individual’s needs. That, at least, has certainly been shown to be the case with Gabe. After the four-month blinding period, consultations with his neurologist began in earnest. At each visit – once each quarter for the first year – his neurologist made adjustments based both on raw numbers – how many seizures Gabe had each month – and, also, on Gabe’s overall level of well-being.

It was not a quick process, nor was progress achieved in a straight-line fashion. Some adjustments had a negative impact, and had to be “undone” at the next visit. But, slowly, as his neurologist fine-tuned the RNS to Gabe’s specific brainwave activity, there was real progress. Now, some two and one-half years later, we couldn’t be more pleased with the results.

Gabe’s numbers of seizures are down significantly. He used to average about a dozen complex partial seizures each month. Now, he’s had just over 20 or so since the first of the year. That, for us, is terrific. Not seizure free – I’m not aware of anyone with the RNS being seizure free yet – but, a very good improvement.

The most significant change, though, is Gabe’s overall feeling of wellbeing. Prior to the RNS, Gabe felt bad much of the time – perhaps 80-85%. He felt dizzy, shaky, fearful, etc. Always felt as if he was on the edge. It was quite a difficult period. But, since the RNS, that has all changed. Since the adjustments, that is. Now, Gabe feels really quite well most of the time, with occasional downturns for a day or two – or, sometimes, for several days – when he feels somewhat on edge again. But, even these bad times are not what they were.

So, we’re really quite pleased with the RNS.

I do know, however, that the effectiveness of the RNS may vary from person to person. It very much depends upon your physician being able to identify your focal point(s), so that the electrodes may be placed correctly.

Well, I’ve gotten quite longwinded.

Again, best of luck to you in making your decision. I’ll pass this forum information on to Gabe, and he may have some input as well.

Please let me know if we can help in any way,

Tim Anderson

Re: Re: Neuropace

Thanks so much for sharing this!

Re: Re: Re: Neuropace

Hey ya'll,
I went in for depth electrodes last week. It comes to find out that my seizures were coming from my RTL. I went ahead and had a right temporal lobectomy done while I was at UAB. I am SOOOOO glad that I was able to have the surgery. Maybe that will stop my seizures for good. I don't know. All I can do is to think positive.

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