Deep Brain Stimulation (DBS)

It kind of bothers me that psychology books and websites seem to publish more information on rTMS (transcranial magnetic stimulation) and DBS (deep brain stimulation) than they do about VNS.  VNS is the only one of those treatments that’s been FDA approved — so why aren’t people talking about it more?

I’ve been watching the research on DBS with a lot of interest.  It seemed to me that if stimulating a nerve that went up into the brain (as VNS does) was helpful, then directly stimulating the brain would totally be the bomb!  But I read an article in the American Psychological Association’s magazine, The Monitor, and I feel a little less enthusiastic. 

I thought there had been a lot more research done with DBS — right now a mere 60 people have been treated with it for psychological problems like depression and OCD.  Sixty?!  That’s a ridiculously low number for them to be touting it as the Next Big Thing.

Plus I don’t like the fact that some people seem to have cognitive impairments afterwards.  You can have thinking and memory problems following ECT (electroconvulsive therapy) without having someone drill holes in your skull!  (Is this the acronym post or what? *wink*)

To be useful, these approaches really have to be better than existing approaches.  The problem with rTMS is that the effects don’t last long.  I also don’t get the impression that they’re as powerful as they are with ECT. 

The problem with DBS is they have to drill a hole in your skull in addition to implanting a pacemaker-like device in your chest and running wires up your neck (like they do with VNS).  I don’t want anybody poking around in my brain unless they’re damn sure they know what they’re doing — and that it’s going to work!

I do think it’s an exciting time in psychology.  I keep wondering if eventually some people will be able to move away from medications altogether and we’ll be able to repair malfunctioning parts of the brain with implants like these.  I’m still excited about my VNS, and I think it’s cool to be on the cutting edge of modern science.  I think it’s even more exciting that they’re just continuing to do research on VNS, and they’re learning more and more about ways to help people with depression with it.

I am extremely hopeful that I will see even more improvements over the next six to eight months with my VNS!

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.

Picture of Leads

Here’s another picture.  In this one you can see my leads (the wires in my neck).  Just to reassure you, the reason you can see them is because of the way I was holding my head, kind of arching it back and pushing my shoulders forward.  But I thought you might like to see.

Left: leads go over collarbone into neck (looks like a circle) Right: how things normally look

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….

VNS and Me

The first, and most obvious question, is — What is VNS?

VNS stands for Vagal Nerve Stimulation. The Vagus nerve runs down from the brain stem and affects all those important internal organs — heart, lungs, etc. According to Wikipedia, “Vagus nerve stimulation (VNS) is an adjunctive treatment for certain types of intractable epilepsy and clinical depression. VNS uses a stimulator that sends electric impulses to the left vagus nerve in the neck via a lead implanted under the skin.”

So that brings us to this blog.

I’m getting the VNS implant in two days for chronic and recurrent depression, and I intend to chronicle my experience with it here.

But let me bring you up to speed with a little info on me. I’ve had problems with depression since I was 11. It was kind of like being the unwitting victim of a landslide. One minute I was struggling through adolescence like any other kid, the next I was buried under a few tons of sharp and painful rocks, wondering what the hell hit me.

In the 25 years since, I’ve taken every psychological test, done all kinds of therapy, and taken damn near every medication on the market.

The problem is, a med will work for a little while and then stop, leaving me back where I started. I seem to have that problem every year to two years. Right now I’m taking a cocktail of meds that makes even the pharmacists raise their eyebrows (and you know they see everything). We had to just keep adding things until I was functional again. I was in bad shape this time around…bad enough that I was ready to try anything. (It only occurs to me after I wrote that that “I was suicidal” might have more impact on the reader. I don’t even see “I was suicidal” as shocking anymore. Suicidal is a given when I get bad. I can’t stand to be conscious when I get bad, so I “self-medicate” with sleep, sleeping 16-20 hours a day, easily. Not so good for the career.)

Anyhow, here’s my cocktail.

Effexor — 225 mg
Abilify — 4 mg
Lexapro — 20 mg
Trazodone — 100 mg
Synthroid — 100 mcg
Cytomel — 25 mcg
Lamictal — 100 mg
Deplin — 7.5 mg

Those are just the drugs for the depression. And I’m still having trouble.

I’ve also taken

Prozac
Zoloft
Celexa
Wellbutrin
Cymbalta

and a handful of old-standby antidepressants called tricyclics and MAOIs.

I’m kind of nervous about having this thing implanted. I mean, in some ways it feels really counterintuitive to me. I want my depression taken out, so we’re putting something in? But I guess that’s how medication works, too. You put it in the body.

On the other hand, if it could mean never having to sleep just to stay alive again, freaking wire me up!

Oh, one more thing I should add in this first entry. Insurance has refused to pay for it. They don’t care that I’ve wrestled most of my life with this disease, this monster, this demon; their refusal letter is practically a rebuke. And they are cheerfully sure to add that they don’t care if you have a life-threatening illness for which this is the only treatment — they’re not paying, dammit. But hey, have a nice day.