Sunday, December 15, 2013

SCS trial, days 3-6

It's official- I failed to manage to post every day like I'd planned on doing. I have good reasons, I promise. While you have the trial in, the doctors want you to push the limits a bit. There are rules about how can you can move, so as to not move the wires too far from where they need to be in the spine. But within those limits, they need you to see if you can do more than normal. So I spent the last 4 days of my trial getting out of the house and walking more. This meant I was extremely exhausted, from not only the extra activity, but also from the process of my brain adjusting the sensation of the paresthesia.

The end of the trial:

My trial unit was malfunctioning. It worked, but every time I turned on the remote, the intensity went up. It was very,  very random. A couple minutes after the remote locked again, the intensity dropped again. The sales rep said that the big thing was I was getting pain relief. And I did!

It was fantastic. I actually got pain relief. The buzzing is weird, but you get used to it shockingly fast. The buzz is exactly like everyone described it- it felt like a cell phone on vibrate, just from my belly button on down.When I cranked it up, it feels a bit like my leg is about to fall asleep, but hasn't yet done so. It's completely painless. Even when I moved suddenly and get a big jolt, it didn't hurt, it was just startling. Plus, once I get a permanent unit, I shouldn't get those odd jolts. With a permanent unit, scar tissue forms inside the spinal cord around the electrodes and holds them in place. The wires are also connected to the actual vertebrae through some drilling, plastic, and metal. The trials are far more flimsy, hence the jolts.

It was a fairly easy decision to decide to go through with the permanent implant. I could bear about 10-15% more weight for short distances within 1 week of the trial unit being in- and SCSs become more effective as time goes on and the nerves higher up the system are less traumatized and become less irritated in general. Kind of like a wound healing. When the healing first starts, everything is more painful because there's swelling and irritation of the surrounding tissue. But as those issues fade, even if there's still a bit of a wound left, it's far less painful. Same idea. The SCS is not a cure, nor will it even likely buy me a remission period, but it should lessen the burden of quite a few of my symptoms and slow the progression of the disease.

One of the best surprises of the trial? The SCS slowed my heart rate! This is not a normal thing for them to do, but I have chronic tachycardia that is severely exacerbated by my CRPS. So my heart rate dropped low enough that I could make do on my old dose of beta blockers and still breathe, or about 80-100 bpm. I was very happy with this, as I'm currently back to my newly doubled dose of beta blockers and it's trying to tank my blood pressure, so I'm eating All the Salt.

Anyways, I'm meandering a bit. The trial was excellent. I found myself rarely messing with the remote, only adjusting the current about 3-4 times a day. I could comfortably do almost everything with it on, including sleeping. With how loose the trial is inside the body, I quickly learned to not do anything that involved tensing the muscles with it on. That included going the bathroom, coughing, and crouching (which my hip hates anyhow). I chose to use the on/off button on the actual unit strapped to waist most of the time, as I hated shuffling back across the house for the remote. I figure I'll carry the remote more on me for the first few weeks after the final implant.

As for personal hygiene during the trial, there was a firm No Bathing policy. I chose to go with fully unscented, sensitive skin wet wipes instead of old school sponge baths- much easier. Plus, I don't sweat much, so it wasn't a big issue for me. My hair was much, much harder to care for. I used Aveeno brand spray dry shampoo the first few days, and while it did strip the oil from my hair, I found it left my hair very limp and sad looking. After a few days, it had built up quite a bit and I felt disgusting, so I conned my dad into taking me to Great Clips (very cheap chain salon) to get my hair washed. I couldn't manage to wash it at home as I couldn't bend far enough to get my short hair away from my back. The salon was able to lean me back in one of their chairs. I had planned on my normal stylist being able to do this, but M was off for the holiday weekend, so I made do. It worked great and I felt infinitely better afterwards.

Now, to just wait for my surgery day. I'll be seeing a surgeon about 40 minutes north and the surgery will be at a hospital I've had surgery at before. (Though, really, I've had surgery in most of the local hospitals it seems...) My pre-op appointment is this upcoming Wednesday, 12/18, and surgery will be Friday, 12/27 at 1 pm EST.

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