VNS and Me

July 23, 2008

Getting Used to the Stimulation

Filed under: stimulation, voice — vnsandme @ 1:22 am

The stimulator has been on for a week today, and it has finally stopped twinging (hurting a bit) when it comes on. In fact, I’m mostly aware of the sensation of pressure against my throat, or obviously if I’m talking my voice changes.

I’m learning to pitch my voice lower when it starts up, which has the effect of making me sound a lot sexier than an adolescent boy whose voice is changing. I guess anything’s an improvement.

I asked my psychiatrist how long it normally takes to get this thing up to therapeutic levels, and she said about two months.

I’m a little scared about going up to the next level. Obviously you really do get used to the stimulation, but I can’t help but worry a little bit — what if I don’t when the signal is stronger?

I get turned up next week.

In the meantime, I am going on a little vacation. I’m staying with a bunch of people who don’t know about my VNS, but I kind of figure they will before our time is up. I’m going to wear my magnet on a wristband I rigged up that I like better than the one they gave me with the magnets, but I don’t see how people could not notice that you’re lifting your arm and touching your chest with your wrist every few minutes…right after your voice gets a little weird, in fact…

I hope they’re cool about it and don’t give me that TMI look like my class did. I hate that psychological problems get strange, uncomfortable looks that medical illnesses never would. I would much rather people took the information in stride and asked questions if they had them. Some of my friends have touched it to see how it feels under my skin, and I like that a lot better than discomfort.

July 17, 2008

Vagus Nerve Stimulation – Getting Turned On

Filed under: magnets, stimulation, voice — vnsandme @ 12:41 am
Tags: , , ,

Yesterday the stimulator was turned on.

When I got to the doctor’s office, a rep from Cyberonics was also there. Since he helped to arrange the surgery for me, I knew who he was.
VNS wand
The doctor gave me a “wand” to put over the stimulator. It’s flat and blue on one side, with lights to indicate whether the handheld computer attached to the other end is communicating with the stimulator. The part that actually touches your skin is a flat circle that fits right over the stimulator.

I was really, really hoping I wouldn’t be able to feel the unit go on, but I did, like a flutter in my throat. That was tolerable, so they turned it up to the next level. When it went on, it was like a mild shock, the way it feels when you touch a metal doorknob and you’re not grounded. Then it would settle into more of a feeling of pressure against my throat.

The doctor and the rep assured me that I would get used to this and be less aware of it over the next two to three days. And it has gotten better, more just the feeling of pressure against my voice box. I’m tired tonight, so when it first comes on I have the sensation of a sore throat, but it goes away quickly and I just have the pressure left.

I sound raspy when it goes on, huskier and uneven; to some extent I can modulate my voice to make it sound more normal.

I teach, and I (bravely? foolishly?) decided to try to teach with the vocal changes, to see if I could push through them. But you need to speak loudly, and boy, was it obvious something was wrong. I sounded like I was going to burst into tears or something. I had to explain that I had this implant that made one of my vocal cords vibrate. They just looked at me. TMI, I guess.

So I used the magnet every time it started to go off and I was talking. That thing is a handful, so it was fairly obvious what I was doing. If you took it off the clip, it would be smaller, but I was just sort of making do. When you touch the magnet to the stimulator, it flips off, and when you move the magnet away, it stays off until the next time it’s supposed to go on. Then it goes on normally.

I’m going to have to figure out how to tuck the magnet without the clip or the wristband under my bra strap to keep it in place. I may try sewing velcro into a bra and putting a bit of velcro on the back of the magnet to see if that would work. I also thought about just looping the velcro around the magnet and my bra strap so I don’t have to stick anything on the magnet. Either way, guess I’m going to buy some velcro.

It would be even easier to use sports tape, but 1) that seems like it would irritate the skin if you used it much and 2) it’s summer and I’m not sure how well it would hold if I sweat. The magnet is heavy.

I see the doctor again in 2 weeks, because they have to work you up to therapeutic levels. I’ll talk to her about my voice, because it’s pretty obvious even when I’m just talking normally. Honestly, it’s given me another OMG what have I done? feeling after trying to teach with it. I feel a bit like a freak.

It’s hard not to start thinking about things like going on dates, and how it might come off if my voice keeps changing. So then I’d need to use the magnet. But the implant isn’t directly under my bra strap (just the scar), so it’s not like I can wear a tank top and surreptitiously hide the magnet against it. So then I start to think, I‘m going to have to change my whole freaking wardrobe

This whole depression deal isn’t fair in the first place, and here’s one more thing I’m going to have to do to manage it and try to look like a “normal” person.

*deep breath*

Try to see the problems as challenges, and not let myself get down.

The doctor assured me that they can manage side effects, so I’m going to try to set the freakish feelings aside and hope this can be managed a bit better than it is now. And, like my family keeps reminding me, if it works, it will be worth it.

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