VNS: Very Nerve-Wracking Shit or Virtually No Science*

Blind belief in authority is the greatest enemy of truth.

Albert Einstein

Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator

We're a weird bunch.

Humor is tragedy plus time.

Mark Twain

My friend Erika and I were talking on the phone last night, and I was sharing with her my recent visit to The Neurologist. Erika has a child with a seizure disorder as well, and even though her daughter is many years younger than my Sophie, Erika's sense of humor is sharp, achingly so, and she jumps right into the Roman gladiator pit with me.

As you might have surmised, Sophie's honeymoon from daily seizures is now officially over. The drug Vimpat has ceased working as well as it was, and now we're on the tiresome wheel of deciding what to do next. We don't really have any options that jump out at one, unless you think another ketogenic diet trial is worth it.  The second and last time we tried the keto diet was about a decade ago (the first time was in the early days -- the mid-90s, when not many people even knew about it), and while it helped Sophie a bit as far as seizure control, it also turned her into a caged tiger, ravenously, desperately hungry with impacted poop (I'm not mincing words). It traumatized me so deeply that I look on that time as being equal to the trauma of her diagnosis and the early days of high dose steroids. That the connection between mothers, children and food is a deeply primitive one is not lost on me, but acknowledging it does nothing to dull the pain of that time.

A second choice is a revisiting of the drug Vigabatrin (or Sabril, as it's also known)-- one of the "newer" approved drugs and one that we tried, also, back in the mid-90s when we ordered it from England. I've waxed philosophical about Vigabatrin in a chapter in my yet-unfinished book -- the chapter was then published on epilepsy.com's website.  The drug wasn't approved for many years in this country because of some very serious side effects involving the retinas of the eyes. It's now approved and used as a front line drug to control infantile spasms, the terrible epileptic syndrome that Sophie was diagnosed with -- a form of epilepsy that continues to stymie the best minds. In fact, very little progress has been made for babies and children with infantile spasms in the sixteen years that we've been part of that club. In order to go on the drug now, one is subjected to a strict protocol -- eye exam baselines and the signing and initialing of pages of caveats and warnings and information. This is what I did at The Neurologist appointment yesterday, and as I told Erika, I found it bizarre and not a little hilarious that I was able to casually check the little box and print my initials, EA, next  to sentences like: I understand that about 1 in 3 infants taking Sabril will have damage to their vision. I understand that if any vision loss occurs, it will not improve even if my infant stops taking Sabril. 

I loved Erika when she burst out laughing when I told her about initialing this sentence: I understand that there is no way to tell if my infant will develop vision loss.

Unless you get it, you're probably not laughing, but we were and I think if we were two women in vaudeville we might have been slapping our knees in hilarity, knocking each other over with the force of the absurdity.

What really set us to being utterly cracked was my description of our other "option" for control of seizures: the vagal nerve stimulator or VNS. You can google and read about it online, if you'd like to know more. It's been around for quite some time and really doesn't have a fabulous efficacy rate -- the rule of thirds, much like drugs (one third improve, one third stay the same, one third get worse or go off). In any case, here's a scan of the box that had the informational DVD and brochure. 

In describing the packaging, I wondered aloud to Erika about the work that went into that marketing and how hard a group worked on  just the right words, the right picture, how much to suggest, how to harness hope and propel people toward treatment. I wondered aloud to Erika whether the two women frolicking on the beach might be our daughters one day or maybe even the two of us, looking beyond. 

We just laughed and laughed and laughed.

Sanity and happiness are an impossible combination.

Mark Twain