Surgery Day – Vagus Nerve Stimulator (VNS)


The most important factor in Lydia’s potential, in her quality of life, is seizure control. She won’t learn to feed herself, walk or talk if we don’t stop the seizures. She might not anyway given her bunk brain development but seizure stoppage would give her a fighting chance. If that can’t happen then it needs to be seizure minimization. But I will throw absolutely everything at the possibility of total control. Because, well, there’s a CHANCE there to help her. It is not a project for the weak. I’ve had to become . . . strong is not the right word for it . . . cruel. Does that surprise you? I mean, come on, I’m feeding my baby drugs with terrifying side-effects as soon as she wakes up in the morning and again before she goes to bed. I know the risks. I see the side-effects. If I felt guilty about it I’d go mad. So I don’t and I can’t. She has to suffer my experiments in the hope of greater freedom from seizures. Topiramate, phenobarbital, Keppra, Lamotrigine, Prednisolone, ketogenic diet, Sabril, medical marijuana (more on that some other time), B-6, holy basil oil, omega oils, massage, music therapy, aromatherapy – hell, I’ve given it a go!

The current project is the installation of a Vagus Nerve Stimulator. It requires surgery under general anesthesia. My logical brain knows the risks are minimal, at least in the sense of being very unlikely. But – now I’m going to contradict my earlier cool – I admit I’m a nervous, shaking leaf. Thinking of the scars she’ll have makes my knees buckle. I’ve been fine until arriving at the actual hospital. Like when you say goodbye to someone at the airport- no matter how short the trip there’s something about the atmosphere, you just feel your stomach drop a little.  So I’m chewing the insides of my cheeks in the waiting room, tapping the arm of a chair.  She’s in the operating room right now…

What’s a Vagus Nerve Stimulator you say? Oh thanks for asking, I appreciate you trying to distract me. It is basically a pacemaker for the brain. The vAgustin nerve runs throughout the body including into the brain and so they tap into it along the neck. By ‘tap into it’ I mean they attach some soft, flexible wires (the lead) to the vegus nerve in the left side of the neck in order to deliver a gentle electrical pulse to the brain. The pulse is generated by a small, battery-powered pulse generator stored subcutaneously (under the skin). The pulse generator is too large for the neck (though no bigger than an iPod nano…or pocket watch for anyone who has a better feel for that…thank you grandpa Jim), so they tuck it just under the left clavicle. The pulse frequency or ‘dose,’ and the strength is infinitely adjustable with a short clinic visit in which they hold a computer over the pulse generator to program it. Simple. A typical starting dose is 30 seconds every five minutes. You also get a magnet bracelet that swipes over your chest and turns the VNS on to interrupt a seizure as needed. For a few lucky ducks this completely stops all seizures. A third of people see an immediate reduction in seizures. A lot of people don’t notice any difference at all at first, but gradually they might notice they have a shorter recovery time after seizures (postictal phase), or fewer seizures in a cluster.  75% of people choose to continue using the VNS when it is time to replace the battery. And the side effects? Hardly worth mentioning. Some hoarseness in the beginning weeks of treatment or voice-deepening during stimulation are the worst of it. It is surgery though and that’s no small thing. But for adults the surgery is out-patient, you can just go home the same day.

The surgery requires one overnight stay for the little ones, just to make sure they’re ok after anesthesia. I’ll attach some photos of our girl before I post this. And just like that, the big board now says her surgery is nearing completion. OHSU Doernbecher is a marvel of a hospital. You can track your child’s progress from operating room to recovery room by watching their number on a color-coded board. And yet don’t even try to get on one of their three puny elevators at lunch time.

Ok, it’s almost time to go see our girl!

———————————–Several hours later———————-

Everything went great! I tried to insert the post-op photo here but damn this touchscreen technology, I couldn’t figure it out. It is posted above. Anyway, everything is good, we’re good, and she’s just resting now. I’ve been reading over the manual for her new gear. There’s a version for those treating epilepsy and a version for depression. I forgot a VNS could also treat depression. Maybe we could have mommy-baby ones, haha. Before you decide to get a VNS, ask for one of the manuals. Nothing in it that would have changed my mind about getting her one but the risks are better outlined, also it is now clear to me that I’m going to be guessing as to weather or not the thing is turning on and functioning because, although you’re supposed to test the battery daily and make adjustments with you doctor for your comfort, you do so based on being able to feel the thing turned on. Hm.

Lydia, honey, blink once for off twice for on ok?

Despite this odd hitch I didn’t foresee, I think I’m going to love being able to DO SOMETHING when she’s having a seizure. That’s right folks, right when she is in the middle of her seizure contortion, or when she cries and I suspect a seizure is coming, maybe just in case sometimes, I’m gonna wave my magnet bracelet over her chest and zap her!

We don’t come out of the hospital firing though. In two weeks we’ll visit the doctor’s office for programming.

I’ll keep you posted.