April Update

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.

Scars at 3 Months

implantation scars at 3 months

Well, it’s been a little over 3 months since I got the VNS implant. I took a picture so you can see the scars. The one on my neck is increasingly hard to see — soon I won’t need any makeup to cover it.

The one on my chest is a lot easier to see, and raised.  It doesn’t bother me at all, though (well, other than itching from time to time) and it disappears right under even a thin bra strap since it’s vertical.

(If you’re reading this because you’re considering having this done and you’re worried about scarring, totally ask your doctor if s/he’ll do it this way.  It’s the best way to go!)

To the left of the scar (your left), you can see what might look like a bruise on my skin but is actually the curve of the implant.  I’m fairly thin compared to most people (but definitely not skinny) and they do tell you ahead of time that people with small frames and who are thin may be able to see a bit of the outline of the implant.  This doesn’t bother me at all.

Last of all, the picture is (probably obviously) life-size, so you can see how big the scars really are.

In terms of me being back on the downward spiral, I figured out that it seems to be psychological.  Major family upheaval, so I’m going to go back and see my therapist to talk about it.  I really believe that will help, but I’ll be sure to let you know for sure!

Turned Up and Some Answers

Getting the unit turned up wasn’t bad at all; in fact, it was a lot less uncomfortable than getting it turned on and going up a notch right away (to .50). I’m at .75 now, and I go back next week to go up to 1. Then we’re going to stay there for a little bit and see if I’m eventually able to go down a bit on my meds.

My scars look really good. Surgical superglue rocks! The one on my neck is less noticeable than the one on my chest, and I can make it disappear with makeup. Usually I don’t bother, and eventually I think it will disappear.

I know some answers to the questions I asked earlier in the blog. The way they get the wires up into your neck is they use a t-shaped instrument that creates a tunnel for them to run the wires through. Then they can pick them up again at your neck and wrap them around the vagus nerve.

Also, the stimulator unit doesn’t shift under my skin — at least not back and forth. If I lie on my side with my shoulder under me, it does push the side up and out. Not uncomfortable, though.

It also doesn’t feel heavy anymore, I guess I’ve gotten used to it.

I’m also getting better at wearing the magnet to turn the VNS off when I need to. I can tuck it under a black tank top and not have it be too obvious, though it’s just touching the side of the stimulator, so I can still feel it go off, just not as strong. If I really want to hide it, the trick is to wear a button-down shirt. And if I wear one with a pattern on it, you don’t notice any bump at all. I’m sure if you hug me, you can still feel it, because the magnet is like half an inch thick, but I guess if someone’s hugging me, they think I’m ok.

The best ways I’ve found to use my magnets: One is to wear it on a strap on my right wrist. I put the magnet on the inside of my wrist so I just look like I’m scratching my shoulder when I turn it off. I do this when I won’t have to talk a lot but I know I want to be able to turn it off. Better than keeping it turned off. I want it working!

The second thing is just a little velcro strap that goes around my bra strap, much shorter than the one for my wrist. I found this great all-in-one velcro that has the hook and loop all in one side. I’ll have to look up what it was so I can post here. It’s great stuff.

The best part is that I seem to be feeling a little better. I don’t notice that my mood has changed so much as my ability to do things without feeling quite so overwhelmed. Normally the vacation I went on would have been really hard to do, and I would have ended up feeling like I was enduring it rather than enjoying it, but I had SO much fun. And then this last weekend I saw an old friend, and I was able to spend time with him without feeling overwhelmed, too. Especially so soon after my vacation, that’s a big deal for me.

I’m trying to understand exactly how this thing works, and I found some research that says, “evidence from neuroimaging and other studies suggests that VNS therapy acts via innervation of the nucleus tractus solitarius, with secondary projections to limbic and cortical structures that are involved in mood regulation, including brainstem regions that contain serotonergic (raphe nucleus) and noradrenergic (locus ceruleus) perikarya that project to the forebrain. Mechanisms that mediate the beneficial effects of VNS therapy for treatment-resistant depression remain obscure.”

I have a vague understanding of what they’re saying, but I want to understand it well enough to explain it to you, so I’m going to need to read some more!

Ow – Days 3, 4, and 5

I developed a neck spasm on the side I had the surgery, and it was so painful I finally called the doctor. They asked me if my pain was intermittant or constant. They were thinking that perhaps the implant had accidentally turned itself on and was causing the pain. Since it was constant, though, the final call was that it was indeed a muscle spasm.

It’s pretty bad when you don’t need the prescription pain medication because someone cut two holes in your body, but because of the muscle spasm your neck develops in protest.

So I’ve been using the heating pad, and they gave me permission to take ibuprofen. Since the Percoset keeps me awake, I’ve been trying to do that instead. After two days of that treatment, I’m doing better.

The surgical cuts themselves look pretty good after 5 days. I think I mentioned that they used surgical superglue instead of stitches, and it’s starting to peel at the edges. I just trim it. I’ve been wearing scarves to cover up the mark in my neck, which is actually worse than the one below my shoulder. I also have a couple of extremely dark bruises beside the incision — I’m not sure exactly what they did during surgery to cause those.

I am noticing that I wear out more quickly than I’d like, but I guess it’s pretty traumatic to the body to undergo that, especially since I was so sick afterward.

I still haven’t gotten the scoop on when they’re going to turn it on. The doctor’s office has to schedule it, and the woman in charge of that accidentally scheduled it before I had the surgery. Imagine my surprise when I got a call from the turn-it-on-doctor telling my I’d missed my appointment to have something that hadn’t yet been implanted turned on.

The doctor’s office was supposed to reschedule and let me know when, and since I haven’t heard from them I called to remind them.

VNS Days 1 – 3

Day 1:

Surgery first thing. Had to wait for-EVER once we got there. Told to get there at 6:45, apparently the surgery itself wasn’t scheduled until 8. Paperwork took a grand total of 3 minutes.

They put me in a bed in a smock, footies, and a little blue cap. Everyone kept asking me if I smoked, drank, had taken out any piercings, etc. I was ready to ask the next person who asked me if they were asking because we were going to have a party.

Everyone was really nice, and they wheeled me into the OR, which had these 3 ginormous lights. I couldn’t see very well because I’d taken my glasses off. So they attached my IV and the room started scrolling toward the ceiling. I thought about asking if they’d given me something. Then one of the nurses asked me if I could tell they’d given me something. I told her yes, and that was the last thing I remembered until I woke up.

I was wobbly, but got to go home shortly. Slept a lot of the afternoon, but as whatever they’d pre-medicated me with wore off, a began to have a terrible reaction to the general anesthesia. Dry heaves are the worst.

And then I saw the implant.

Guys, it looked like someone had implanted a cupcake. It was huge, and all I could think was WHAT HAVE I DONE??!! I was going to be a freak with this huge lump on the left side of my chest. You could even see the leads going up into my neck. Forget the scars, who cared about the scars…who was even going to notice the scars with this massive soup-can-lid sized lump?

I mean, I teach, and people stare at me for hours at a time. And I like wearing tank tops. My mom said, maybe I just wouldn’t be able to wear as many tank tops, and I thought, Like hell. But then I started thinking about meeting guys. If I met a guy I was interested in, would he be repelled by this nasty huge lump I had? I would be. I started to feel like a freak.

Day 2

Got some medicine to stop the puking.

Was allowed to peel off the gauze. I now have two 2″-incisions, one horizontal on the front of my neck, one vertical just to the right of my left arm….well, that one’s probably more like 3″. There are no stitches, they used surgical superglue, so I won’t have scars from the needle. It actually looks pretty good, considering.

And…thank GOD…the swelling has gone down a bit over the implant so it’s not like I have an Alien trying to bust through.

It’s right under the skin, and I can feel it, a hard disc a couple of inches across. And yes, I can still see the lead going up toward my neck. I really hope there’s still swelling to go down.

Day 3

Checked my phone and go on my computer and am a little upset to have missed some important work stuff on Friday. I expected to be back on the computer by Thursday afternoon after the surgery, and obviously I was trying to turn inside out thanks to the general. So Friday came and went and I missed things that day, too. So now I’ve been doing catchup and a little damage control.

I’m sore, but I haven’t wanted to take any of the painkiller they gave me, because it can make you kind of nauseated. That’s all I need right now. So I’ve just been taking Tylenol, the only other thing I’m allowed to take.

I find myself favoring my left arm, and the implant feels heavy, especially if I lean forward, even though I know it isn’t. I guess it’s just the fact that something is in there that I’m not used to, right underneath this big vertical wound.

I’m trying to figure out what it’s going to be like to have this thing in there when it doesn’t hurt around it. I mean, if I have an itch, will I just scratch like normal, or will I have to be careful I don’t shift the thing under my skin?

I also keep wondering how they got it over there. Did they have to slide a scalpel back and forth under there to disconnect the skin from the muscle or what? Gross, but inquiring minds…well, maybe I don’t really want to know….