[tempaway43355]

One of my children has severe epilepsy and has a Vagus Nerve Stimulation device implanted - Sentiva 1000

https://www.livanova.com/epilepsy-vnstherapy/en-gb/hcp/produ...

It has really helped although obviously it took surgery and then also nine months of slowly tweaking the settings.

Before the VNS they could (for example) not go on a trampoline for more than a few minutes without having a seizure, but now they're fine all day. They did still have seizures at night after the VNS but we tackled those with a different treatment.

The Sentiva 1000 sends regular soft pulses (for one minute every 3.5 minutes) and can also react to heart rate rising suddenly (which might mean a seizure) by automatically increasing its pulses. During a seizure if we want to manually activate the device we swipe over its location with a strong magnet and that activates it to send stronger pulses for a minute or so.

Batteries last about eight years. A few times a year we go to check the battery, the nurses have an ipad and a wand-type thing that they hold over the implants location, it uses some sort of low power NFC to read data and diagnostics from the implant. When we do need to change the battery that will be an operation. But less complicated than the initial operation (and even that was in-and-out in one day)

All pretty amazing.

[victorbjorklund]

Wow, I had no idea that the science around the vagus nerve had progressed so far that we actually have implants that can be used in humans. Amazing. I'm so happy it helps your child.

[civilitty]

I was really skeptical that any of these nerve stimulation devices would work over a decade ago when the hype first started growing around them (among biotech investors, not the public). It just sounded way too good to be true but since then there have been a number of devices treating migraines and seizures that were previously intractable.

Really happy to be proven wrong!

[fasteo]

Note that vagus nerve implants were approved by FDA in 1997

[tibbydudeza]

This is so awesome - thanks for sharing this - my daughter also has epilepsy, but it is fortunately controlled by medication.

It seems that stimulating the vagus nerve resets something to default in the brainstem when a cascade event is about to occur - probably shuts down the errant signals from propagating to the entire brain ???.

Do you know which lobe in her brain it happens ??? (my daughter has left temporal lobe)

[tempaway43355]

My child has Dravet syndrome so its quite major seizure activity and many different seizure types (tc, absence, focal, myoclonic). I think slightly more left lobe than right but its been a while since we had a full EEG. VNS is known to help with Dravet in enough cases that they were prepared to try the VNS.

The VNS can help stop seizures but also there's a sortof long-term effect from just having it firing every few minutes all the time, seems to re-train the brain in some way. I'm not sure if they really know how it works, just that it seems to help.

Another non-medication treatment that was very good for us was the ketogenic diet. Like, hardcore proper ketogenic diet, 4:1 ratio, prescribed and monitored by an NHS dietician. Every meal measured out by the gram. Its hard work but it did work very well. Its been properly researched - https://pubmed.ncbi.nlm.nih.gov/16146451/ https://pubmed.ncbi.nlm.nih.gov/25524846/ - for Dravet syndrome at least, keto is as effective as the best AEDs with fewer side effects.

[karaterobot]

Here's a silly question: does your child feel the nerve stimulation when it happens?

[tempaway43355]

Thats a good question not a silly one. They don't have the communication skills to tell me but they dont seem to be aware of it. Apparently some people experience it as a tingling sensation in throat or neck.

[parentheses]

I've read that removing gluten from diets is apparently a way to reduce or stop seizures. Did you try this? Any information to share?

[spread_love]

Thanks for sharing. I'm considering VNS but frankly I'm terrified of complications and recovery time.

[tempaway43355]

Operation was in-and-out of hospital in one day. Then had a big cellophane-like bandage on neck and shoulder area that had to be kept clean and air-tight for 2 weeks. It was a good bandage though, just had to patch it up occasionally with new layers of cellophane-stuff. Main possible complication would be infection (worse case is that device then has to be removed) or some people have side effect where it feels like their throat is ticked and they cough when device activates. We didn't have any problems.

Then once its all healed they turn the device using nfc wand thing and then slowly increase the power bit by bit over several months. There are various timing and frequency settings that can be experimented with.

[adversaryIdiot]

i wonder why the battery cant be charged wirelessly

[tempaway43355]

Interesting idea. Current battery in the device (I looked it up) is:

Chemistry: Lithium carbon monofluoride

Voltage: 3.3 V, open circuit

Rated capacity: 1 Amp-hour

Self-discharge rate: <1% per year

Its a tiny non-rechargeable battery presumably carefully picked for safety and very slow usage over several years.

I suppose the main barrier to wireless charging of implant batteries would be heat - wireless charging generates heat. And when something goes wrong with wireless charging it can generate a lot of heat. So I guess its risky? But then surgery to change a battery is also a significant risk.

Also I guess someone would have to go through the long process with the FDA of getting it all approved, whereas (at a guess) people designing implants try and use already-proven components and techniques where they can to make approval more likely.

[patmorgan23]

Heat would be an issue but if you do it a little bit at a time might be ok.