Responsive neurostimulation (RNS) as an epilepsy treatment?

Hello Casey (@caseybach). I edited the name of the discussion in hopes of bringing more people in.

Great question about the use of RNS as an epilepsy treatment. I thought I'd also bring into this conversation @mmas @michele0161 @dawn_giacabazi @aroman @mythreeguys, who may have some input.

You mentioned your son has been having seizures since he was 7, can you share how old he is now? Is RNS something your doctor is recommending?

Logan is now 16 and Mayo has recommended an RNS. However, we still need to talk with the surgeon.

I am also considering RNS. I wonder if the hospitals in Chicago (Northwestern) are as good as Mayo Clinic. I am also wondering how much follow up is required. That might be a problem. They probably have more experience with the surgical procedure though.

@heal33
Good morning,
I understand Northwestern is a good hospital it’s ranked number one in Illinois and among the 10 best in the country. If I remember correctly their Epilepsy Center is among the five best in the country and I know they do the RNS surgery.
Here are some study results for the RNS;
Seizure frequency decreased in the majority of participants treated with responsive stimulation. Based on the most recent 3 months of available data for each participant (a last observation carried forward analysis for those with 3 complete months of data), 84% of participants (207/247) had some improvement, 60% (146/247) had a 50% or greater reduction (compared to 8% [19/247] with a 50% or greater increase), and 16% of participants (40/247) were seizure-free.
Some participants had extended periods of seizure freedom. Over one-third (36.7%) of the 256 implanted participants had at least 1 seizure-free period of 3 months or longer, 23.0% had at least 1 seizure-free period of 6 months or longer, and 12.9% had at least 1 seizure-free period of 1 year or longer. No participants were seizure-free over the entire follow-up.
How often do you have Focal seizures?
Do you have other type/s of seizures too?
Are your seizures Intractable?
Which medications have you tried?
How long have you had Epilepsy?
Here are the Epilepsy Centers around the Country,
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Wishing you a seizure free future,

Jake

I have focal seizures about 4 times a month. More, as usual, when I am stressed. I have had seizures since 26 years of age. I had one at about 8 years of age (febrile seizure--chicken pox). Drugs have never worked for me I've tried Dilantin, Lamictal, Gabapentin, Keppra (generic) in combination with Lamictal and Tegretol (generic) in combination with Lamictal. I've stayed on Lamictal since 2004 only because it causes the least side effects--only a slight tremor in my mouth which I only notice happening now and then. One doctor told me medications aren't going to work for the epilepsy I have.

I'm 69 years old and sometimes I think if could have a seizure free life with what I have left (sorry to sound depressing) or just keep living with them as I have for the last 43 years. I'm sure my problem isn't as bad as some on this site because they last maybe 15-20 seconds or slightly more. Some are worse than others and they do affect my level of consciousness. I have tried to slow my breathing and keep reciting something over and over. Slowing the breathing seems to help somewhat.

With what you're telling me about results Jake it didn't sound real encouraging but I guess I'll have to ask the doctor when I see him.

Responsive Neurostimulation (RNS) Epilepsy treatment
I have been suffering from epilepsy when I was 7 years old. The medication I have been taking has failed me over the years. My neurologist suggested raising the dose of the Trileptal, (generic) and added Keppra, (generic). Both have failed me over the years, so the neurologist suggested VNS. I have looked up the difference between VNS and RNS and realized how many people had near-death experiences with VNS and rid of it soon as possible. While others were happy with the RNS. What else is there to know more about the RNS? And how does it work?

Hello @wildone101 and welcome to Mayo Clinic Connect, where members get and give support. I understand you have been suffering from epilepsy since age 7 and it sounds like you are not having success with the medications prescribed any longer so are interested in learning more about RNS.

If you click on the "view and reply" blue button, you will be brought into the discussion where you can scroll up to see past comments. I think you will locate a good deal of information when you find the post by @jakedduck1 dated September 1, 2020.

Does that information help as a staring point?

@wildone101
I have had seizures on a very regular basis for 44 years since I was 15 and occasionally much less frequently for another 10 years.
I went to Las Vegas to meet the founder of the VNS (Vagus Nerve Stimulator) message board forum and she did extensive research and if I remember correctly she found death/s that the manufacturer didn’t disclose during the trials. My seizures improved after I started taking extended release medication. Stanford university did a study that people with Epilepsy should not switch between brand to generic and vise versa and they should always use the same manufacturer.
The RNS requires brain surgery to place the electrodes where seizures start (seizure focus) whereas the VNS doesn’t.
The RNS is activated only when it detects seizure activity unlike the VNS which sends out electrical pulses for about 30 seconds about every 5 or so minutes. I haven’t kept up on the latest versions but both RNS & VNS seen to be more efficient when used long term. I believe there is usually an improvement up to 10 years when improvement seems to level off.
If I were to chose one I’d definitely go with the NeuroPace RNS. It also monitors your brain waves which can be sent to your Neurologist.
Here is one VNS nightmare
https://www.epilepsy.com/connect/forums/living-epilepsy-adults/vns-horror-story
Who knows how many deaths were a result of the VNS or was classified as S.U.DE.P. (Sudden Unexpected Death in Epilepsy)
Best of luck to you and I hope you have a seizure free future,
Jake

My daughter has had partial seizures for 38 yrs. Tried every med. Currently on 6 different meds. He seizures are not terribly debilitating. She just gets a little absent for a few seconds. She is currently being seen and ran through many scan,tests there. They have suggested she have a SEEG surgery, maybe followed by RNS , or other surgery. They are saying there is a 40%chance of being seizure free after. Has anyone had experience with this? Wondering if 40%chance is worth the stress of surgeries.

@bonton
I’ve had epilepsy for 55 years and it was severe for 45 years. If you are seriously considering epilepsy surgery I can understand the intracranial electrode placement surgery to locate the seizure focus (where seizures originate) otherwise, I'm curious why they would proceed with it.

Does your daughter have TLE (temporal lobe epilepsy.) If so, Temporal Lobectomy is the most successful epilepsy surgery but that's not to say serious complications don't occur but are less frequent. I knew a man in the U.K. who died after one. Although the risk occurrence may be low seizure outcomes may be great but it may increase seizures frequency or severity, cause muscle weakness, mood, memory or balance problems and so on.
You mentioned “She just gets a little absent for a few seconds.”
Are you sure your daughter is having focal seizures and not absences or is she having both? Does she become unaware of her surroundings, have any automatisms like picking at clothes/hair, wonder or do any involuntary movements?
Personally, I wouldn't have epilepsy surgery for a possible 40% chance of seizure improvement myself.
I don't like the way many doctors accentuate the potential positive effects of surgery and seem to minimizing the risks.
Jake