a Scarlet D

What is an explant, you say? It’s the opposite of an implant. In this case, I am having my Vagus Nerve Stimulator removed. We’re doing it for a number of reasons, but I think the primary reason is to pave the way to the Deep Brain Stimulator study. An upgrade, if you will. That’s a million miles away right now though. They’ll require months of observation to see that I’m still depressed, all sorts of tests and MRIs and such. For now it’s all about the explant.

The basic reasons for removal are that it hasn’t shown itself to be super effective. Even when we turned up the volume to get to more therapeutic levels, all it did was cause me pain. Another big reason is mental. It fired every five minutes for thirty seconds. That’s almost half a million times in the amount of time I’ve had it. The side effects ranged from my voice going hoarse while it was firing to making it actually difficult to breathe when I was over 10,000 feet. Even at normal altitudes it made it harder to push out the air when I was speaking. It reminded me every five minutes that I was bad enough some doctors decided implanting a little shock factory might help. Honestly whenever I start to doubt my situation I think of that fact and realize it really is serious and valid. But every time I went to a counter to pay for something it seemed like it was firing and my voice went wonky. And nobody seemed to notice but it was humiliating.

So that’s the pity party. Was it all that bad? No, I guess not. My wife said I did seem to improve after six months and that it was helpful. I can’t discount it’s effectiveness just like I can’t say my Lithium is helping (or hurting) at all. The only single element of my therapy bouquet that I can point to and say it helps at all is the Wellbutrin. I had a period where I went off it because I was short on prescription, and by the time I got it sorted out, I had tanked. Hard. Also, whenever I had a depressive episode and we increased the dosage (it’s maxed out now) it really did help. So not knowing if it was helpful or not helpful or merely stabilizing leads to the next question.

What if we take it out and I get worse? It’s a question that gets the same response whenever I bring it up. “I’ve been wondering that myself.” My primary psychiatrist voiced some serious concerns. He said we could turn the VNS off and delay the surgery one or two months. Just to see what would happen. But would two months be enough? How about six? Or a year? It’s a slippery slope. One of his concerns was one of my motivating factors. He sees me so close to the line between safe and unsafe that he’s concerned I could get worse and it could push me over that line. My suicidal ideation had the exact same thought and moved it over into the “pro” column. My psych knew I would say that. So he let me decide (or at least let me think I was deciding) and I want to go ahead with the explant. I’ve been mentally preparing for this, and going through the paperwork and appointments, I just don’t want to have to start over this winter.

The surgery is set for the 30th, which is coming up fast. Last Friday at my ketamine appointment we had the nurse turn the VNS off. So at least we’ll get ten days or so of silence to see if anything happens. It’s peaceful having it off, and I only notice it when I realize I don’t notice it. If that makes sense. No twitch every 5 minutes or phantom voice issues. Just quiet. And no magnet jewelry!

The process is similar to the implant. Except they’re taking it out instead of putting it in. One complication is that the lead that connects to the nerve can have scar tissue built up, and to remove everything can be fiddly. Normally then would pull the power box inmy chesk and clip the wires leading up to the nerve. But for the DBS study it has to be completely removed. The neurosurgeon says it’s no problem, it just takes a little bit longer. Pre-op and post-op are the same, since the implant just positioned the device and didn’t activate yet. I don’t remember much of the implanting except some specific memories. Meeting all the doctors before the surgery, coming out of the anesthesia fog, and having the scars heal over time. Don’t remember if there was pain, or how functional I was. I don’t remember things like how long before I could drive, things like that.

As for my worries and feelings, there are a good mixed bag. On one hand I’m some sort of excited to get it done. Not like “Yay I’m going to Disneyland!” but more like “yank this thing out, now, please. It’s a week and some change away and honestly the anxiety building could be a problem. I’m worried about Medicare and money, about the logistics of the healing process after the first week as I’m alone this time, and only a little worried about complications. Like losing my voice or ending up with permanent hoarse voice. I feel like every hour I think of something else to do or worry about, and all I have is time. Plenty of time to think.

Logical me hopes (I guess) that it comes out and paves the way to more solutions. But depression and anxiety me (and drunk Robert) hope for something catastrophic in the operating room. Or that I *do* get worse without it and it pushes me over the line. But I’m being honest (to a fault) with my therapist and care team, so they’re fully aware and working to help.

This was, of course, going to be a very short post. It never is, is it?

tl;dr Removing VNS next week, might be good, might be bad.