VNS Switched On

Sufficient time has passed since the surgery so we saw the doc on Monday to turn on my daughter's VNS. I once again explained what it would do to her. I don't think she's ever really understood what we were doing or why. She just grudgingly went along. Naturally, she'd rather we'd all just leave her alone but she also wishes she didn't have to deal with her seizures. For all her trepidation, she's been a trooper.

So the doc brings out this laptop computer with a device attached by a cable. I didn't note what kind of computer it was but I did notice a DOS command prompt when he exited the program. I'm thinking this was a 486 that was still chugging along running proprietary software. Anyway, he has my daughter hold the device, a metal box about 3"x4"x7" with a single LED indicator light, up to her chest. He changes a few settings on the computer screen (frequency and strength of the charge) and less than ten minutes after arriving we're done.

After a few minutes, she receives her first pulse. It's weird for her, of course. Then again five minutes later (and so on forever more) she gets another one. She describes it as a kind of vibration feeling which is to be expected. A small electric current is sent up the vagal nerve which runs up the side of the throat for 30 seconds every 5 minutes. She can also activate it herself with one of the supplied magnets which would send a stronger charge for when she feels a seizure coming on. Although not uncommon, we did not note any drastic change to her voice. It should also be noted that it is set at the lowest and most infrequent setting so she can get used to it. No doubt the doc will be upping the charge a bit in a month or two.

Interestingly, today she was asking for her magnets so that she could activate it herself. Not only does this show she's getting used to it but also is ready to take some action herself to control her seizures. We'll have to explain to her that this device may not show real effectiveness for a few weeks or perhaps even months. On the other hand, some patients have noted some improvement almost immediately. Personally, I think just having the option that there's something she can do when a seizure approaches would give her some sense of control. As long as she can derive some benefit from that, the added sense of control could give her a much needed confidence in dealing with the world in general.

Hardly a cure-all but a step, a small but significant step in the right direction. Sure she has a long ways to go but I'll take my victories wherever I can find them and build on from there.