VNS and Me

April 29, 2009

April Update

Filed under: implant, living life, scars, surgery — vnsandme @ 12:32 am
Tags: , , , ,

Well, it’s April, and at the end of June I’ll have had my implant for a year.  The psychiatrist who handles my VNS adjustments keeps telling me that many people see the most noticeable improvements between a year and a year and a half.

I started seeing a difference within a few weeks; now the thing I’m most aware of is that when I get down I don’t feel the need to sleep for 20 hours at a time.  (Seriously.  When I get depressed, I can just SLEEP.)  Though a few times that’s bummed me out, because sleep is an escape for me, overall I’ve been able to stay more active in things I like doing, rather than just becoming kind of comatose.

I need to post new pictures of my scars.  The one on my neck is really hard to see at this point; some days I don’t even bother to cover it with makeup, because you’d never notice it anyhow.  The one on my chest is still pink, but it’s flattened out and I can see that it’s going to start turning white soon.  I can’t tell you how much I appreciate that the doctor who did the surgery did a vertical cut that disappears behind a bra strap.  And it doesn’t bother me even if it does peek out from time to time if I’m wearing a bathing suit or something. 

I’ve really enjoyed reading comments and questions from other people who are considering the implant, or who have gotten one themselves.  I’m curious about what other people’s experiences have been?  If I’m able to collect a few stories, I can post them in a new blog entry.

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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