VNS Therapy

Palomar · 2004-07-19 16:59:04

*Last month my husband underwent VNS therapy implantation (vagus nerve stimulator). This is a miracle device. Long story short: My husband suffers from seizures as the result of a traumatic head injury sustained in an accident in 1984 (I didn't know him then). Since August 2000 his seizure episodes began increasing until they reached a crisis point earlier this year, when he was having grand mal seizure episodes (at least 3 per episode) twice a month and also petit mal seizure and pre-ictal behaviors nearly every week. Medications only go so far, of course.

In the 3rd of week of June my husband underwent same-day surgery at a local hospital. The VNS was implanted through a small incision on the left side of his chest and another smaller incision in a crease on the left side of his neck. The device was programmed 3 days after surgery.

Since the programming of the device he's had no seizure episodes of any sort whatsoever -- over a month now. Without it he surely would have had at least 1 grand-mal episode and 1 or 2 petit mal seizures by now.

Last weekend my husband told me he'd suddenly felt a stinging sensation in his neck. The VNS apparently fired an extra impulse to quell the stirrings of seizure activity in the brain. An impulse is automatically sent for 60 seconds every 3 minutes, but if the VNS detects the beginnings of seizure activity in the brain it automatically fires regardless.

VNS also improves mood, sleep, etc. It is *highly* effective in 80% of patients who receive this treatment and somewhat effective in the remaining 20%.

Earlier today we had an appointment with my husband's neurologist. The doctor told us of a case he'd just treated -- a young man suffering with 2 days of continual seizures in which increased medication wasn't stopping them nor was a medication-induced coma. They received funding to implant a VNS device on an emergent basis, programmed the device and the seizures stopped immediately. How wonderful.

The device isn't entirely fail-safe, however. Each patient of this therapy is supplied with 2 small magnets to be carried on one's person. Should my husband have a break-through seizure episode I will swipe the magnet over the area of his chest where the VNS is implanted (:edit: The magnet provokes a very strong impulse from the VNS to further aid in knocking the seizure activity). A physician's assistant told us of a case wherein a female VNS patient was having an EEG performed when she went into a seizure. Her mother got up, swiped her magnet over her daughter's chest and the daughter's garbled, unintelligible language immediately stopped and next she was heard in clear English to say "--am so tired of these seizures!"

This is marvelous technology. We both feel like a tremendous burden has been lifted from our shoulders; I especially do not feel as anxious and worried as I did this past spring especially (it was a very difficult time for both of us). Today the VNS generator's impulse was increased and next month it will be increased even more, with hopes of decreasing a particular liver-damaging anti-seizure medication my husband is on.

We are so happy!

If you or a loved one can benefit from VNS, check it out with your physician.

--Cindy

Shaun Barrett · 2004-07-19 19:37:21

I'm delighted to hear it!
Congratulations! :band: :up:

Rxke · 2004-07-20 00:45:09

Wow. Read about this stuff, quite a while ago, thought it was still experimental... Wonderful, wonderful.

Giving people back their lives, with a simple (relatively) operation, that's great!

DERF · 2004-07-20 17:09:01

First of all, I have to say it is wonderful that we are actually beginning to use technology to improve our lives in this way.

Michael Crichton wrote a book about this called "The Terminal Man". The book had the same familiar, biting, writing of him. It started out with some sort of criminal who attacked people during seizures or something. The treatment worked for a while, then he naturally became a serial killer who also was really smart or something. Techno-horror makes me angry. Also, this makes me hate Michael Crichton. I just had to get that out. But, really that is awesome. Congrats, Cindy.

Ian Flint · 2004-07-20 18:15:55

Great News!

Normally I prefer natural remedies, but this is one of those inventions that still gives me hope that western medicine isn't that bad. It is even counteracting the liver-damaging drugs that your husband has been taking -- wonderful!

Palomar · 2004-10-28 10:11:38

*Thanks for the kind sentiments Shaun, Rik, DERF and Ian.

The benefits of VNS in our lives is substantial. Thought I'd wait a few months before posting again (though I don't expect this to be a continuing thread much past this post).

My husband sleeps better.

He doesn't wake up with nasty headaches in the morning like he suffered in the past 2 years especially.

He has had no petit mal seizures since the VNS was implanted (previously he averaged 2 petit mal seizures a week).

Since August 2000 my husband's grand mal seizures became more frequent; from summer 2003 until June 2004 (when the device was implanted) he began averaging 1 grand mal episode (4 seizures to an episode usually) once every 3 weeks. Now he's averaging 1 grand mal episode once every 1-1/2 months.

When he has a grand mal seizure episode the seizures themselves are much more mild. No more violent seizing or great amounts of agitated/restless motor activity afterwards. Swiping the magnet over the VNS implant thus far doesn't stop the seizures cold (but then the implant isn't yet at full power; it's a slow process of titrating the impulse upward), but does calm him down noticeably.

He's now taking less anti-seizure medications, particularly one med which, over the long-term, has a very detrimental effect on the liver.

At least 70% of the previous stress we knew is *gone.* It really is a miracle device.

My husband's neurologist called yesterday. I became worried...what if the titanium battery model has proven to be leaking or is faulty, what if my husband's is in the same batch number and they need to remove the implant and replace the battery? My husband's body doesn't handle the stress of surgery well at all...I tried not to sleep on the worry, but we had to wait until this morning to see what the doctor wanted. Good news: Doc wants my husband or a small group of people to speak on local television with him about the benefits of VNS therapy. :up:

If you know someone who can benefit from VNS Therapy, TELL THEM!!

--Cindy

SpaceNut · 2004-10-28 10:36:37

I read some where that there has been work done on creating a recharging process rather than opening a person back up just to change the batteries I though it was something to do with pace makers.

Rxke · 2004-10-28 11:36:41

Sigh...

All of a sudden reminds me of a guy in college, who started out as quite a clever guy, but who suffered increasingly more and more seizures...
In the end he just walked around, totally drugged, with a very grim face, he knew it was getting ugly fast... Gettin small seizures about every hour or so... Grand mals every 2-3 days... He deteriorated rapidly, often had to be carried away by ambulance... Eventually he got hospitalized, only to die a year later (the seizures damaged his brain little by little...)

That's about 15-20 yrs ago, nothing could save him, medication didn't help anymore...

If only VNS existed back then...

Palomar · 2004-10-28 11:56:07

Sigh...
All of a sudden reminds me of a guy in college, who started out as quite a clever guy, but who suffered increasingly more and more seizures...
In the end he just walked around, totally drugged, with a very grim face, he knew it was getting ugly fast... Gettin small seizures about every hour or so... Grand mals every 2-3 days... He deteriorated rapidly, often had to be carried away by ambulance... Eventually he got hospitalized, only to die a year later (the seizures damaged his brain little by little...)
That's about 15-20 yrs ago, nothing could save him, medication didn't help anymore...
If only VNS existed back then...

*That is beyond tragic; brought tears to my eyes.

Yeah, medication can only do so much. How many other people have suffered a similar fate...how many people in developing nations still suffer this fate?

I certainly hope anyone who needs VNS can get it. It's hell enough watching someone go through seizures, and I can't imagine what it's like for them. Especially your friend, knowing what was coming, fearing it might (and likely would) only get worse. How did he keep going on in spite of it all?

He was very courageous.

--Cindy

(My husband likely would have suffered the same fate. His seizure disorder is the result of a head injury, and not organic. If meds had utterly failed him, I doubt any sort of surgery could assist. So VNS has likely saved his life ultimately)

Rxke · 2004-10-28 12:53:06

I didn't really know him that well, but even the people in his class hardly knew him, he was very private.

We talked sometimes, though, I was one of the few who wasn't spooked by his drugged errr... (words...) appearance. He always looked disheveled, sweaty, like having a bad hangover...
We talked about music (turned out he was one of the *very few* people that knew stuff like early Velvet Underground etc...)

Never talked about his situation, only once he said something like school was better than sitting at home, waiting for attacks even if he wasn't able to really 'be there' all the time (he had some kind of very frequent micro-seizures, his mind just stopped for 0.0005-3 secs, so he constantly lost track in conversations, and lessons...)

The very day school ended (the last yr of college) we gathered for proclamation (or something...i forgot what precisely..) And the mayor honcho told us he had died the day before. Very weird feeling. He was already gone for a year, noone had really gotten to know him, yet...

And there are thousands, maybe millions of people like that.
Let's hope VNS gets cheap enoug, in time, to make it a fairly standard practice.

C M Edwards · 2004-10-28 13:50:04

I am reminded of my sister, Anna.

Anna had epileptic seizures as bad as that fellow Rxke mentioned. They were slowly killing her. Medication helped some, but not enough, and changing medications after her tolerance passed safe limits was always nerve wracking. Once she got into a medication trial, and it was discovered too late that one of the side effects was that the medication somehow triggered status grand mal seizures when withdrawn or tolerance was reached. Of six people in that trial, she is the only survivor.

She considered vegas nerve stimulation at one point, but the surgeon decided her seizures were too extensive to expect it to work. He referred her for an experimental brain surgery.

She ultimately had the surgery. It worked. She recovered remarkably quickly, and the only side effect was some lost peripheral vision. She still has a petit mal seizure three or four times a year - just enough to keep her from getting a driver's license, unfortunately - but medication keeps them mostly under control. She's even a likely candidate for VNS now, but I gather she's had enough people cutting on her for a while. Perhaps later.

I'm curious. Was your husband's response to VNS immediate, or was there a "winding down" period for seizure frequency?

Cobra Commander · 2004-10-29 06:31:07

Good to hear that some progress is being made on this front. It's bad enough when a person's body begins to fail them, I can't fully comprehend how it must be to have the brain itself... malfunctioning for lack of a better word.

I'm glad to hear VNS has helped your husband, Cindy.

Palomar · 2004-10-29 08:40:07

I am reminded of my sister, Anna.
...Of six people in that trial, she is the only survivor.
She considered vegas nerve stimulation at one point, but the surgeon decided her seizures were too extensive to expect it to work. He referred her for an experimental brain surgery.
She ultimately had the surgery. It worked. She recovered remarkably quickly, and the only side effect was some lost peripheral vision. ... She's even a likely candidate for VNS now, but I gather she's had enough people cutting on her for a while. Perhaps later.
I'm curious. Was your husband's response to VNS immediate, or was there a "winding down" period for seizure frequency?

*Hi CM: I'm glad to know the surgery worked for Anna, and that she is doing better. Amazing that she alone survived the medication trial you refer to.

As for my husband, the effects were immediate; especially as his sleeping patterns (vast improvement) and the petit mal episodes are concerned. Also, during the worst of it -- for the 9 months preceding June -- he began sleeping a lot during the day. He'd wake up with bad headaches, his face flushed, etc. He'd take a nap around 10:00 a.m. and another around 2:00 p.m. This also worried me, as he's generally an active/energetic person who likes to socialize and keep busy with repairing cars for friends, doing yard work, etc. He's no slouch. Now he's up in the morning, feeling good, alert and "with it" from the get-go. It's like a completely different person.

Also, I noticed a quick and distinct improvement in his moods (which have tended to be a bit unpredictable sometimes, etc., as relative to a head injury). Improved sleep helps too, of course.

I had to hold my breath on the grand mal seizures. But, again, they went from once every 3 weeks to averaging one every 1-1/2 months soon after the implant.

If the pattern holds, he's "due" for another GMS within 5 days...but the impulse in the VNS has been increased again last week by his neurologist, so we'll see (::fingers crossed::).

All the way around, VNS is a winner.

-Also, my husband claims his hearing is better now.

Thanks, Cobra, for your comments.

--Cindy

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