Since people have been asking.
The steroid nerve block didn’t work. And the pain in my face continues to be often worse than the pain they (temporarily) created when they injected things straight into the nerve.
But what they are going to do is some kind of procedure that slowly kills the pain nerves on that side of my face, but leaves all other nerves intact so I will still have feeling but won’t have the constant pain. I went in yesterday to have that done on my maxillary and mandibular nerves, and was going to have it done on my ophthalmic nerve later when the specialist got back from being out sick. (The ophthalmic nerve is harder to reach and more dangerous to work on.)
However, they couldn’t find my maxillary nerve, as far as I could tell. So they are waiting for the specialist to come back before they do any of them. I will get a phone call and when that phone call happens I will go to the clinic that day, whenever that day is, to get the procedure done. They seem extremely aware this is at the point of being a crisis and want to get me in as fast as they can.
In the meanwhile, I yet again experienced the effects of having two of the three facial areas partially numbed and then back to normal again. Yet again it felt like two walls slamming down, one between me and my body and another between me and the rest of the world. It’s very strange, still, when having something numb makes it feel more like part of you than feeling it does.
Whenever they do this, they said that they’ll put something in the pain nerves, but that it will take up to a week for those nerves to fully die off.
In the meanwhile, I’m functional part of the time. I’m getting over a mild pressure sore caused by sitting in bed all the time in one position because of this pain. A lot of the time I’m really not doing much of anything. If you see me online it’s likely I’ve connected from bed either at home or from a neighbor’s couch I’ve been staying on since I can’t even microwave my own meals at this point most of the time (nor can I always operate a computer, even from bed, or have an attention span longer than a second or so, etc). Meanwhile the only pain meds I’m allowed to take are giving me seizures and when I get really drowsy (which the pain somehow makes me drowsy even without meds) they also give me mild hallucinations while still awake. And one of my most familiar staff people moved out of state, another quit all but one day of the week to take care of her kids since one of them developed an autoimmune disease, and new people are being trained in the middle of this mess. My doing anything will continue to be completely sporadic and unpredictable. I’ve been working on a few posts but they’re still in draft form.
And my main goal at the moment, as my friend put it, is to continue existing until I do get treatment for this, anything else is optional. She’s meanwhile experiencing some kind of either Sjogren’s flareup or odd systemic infection, so she’s not at her best either (she regards it as an accomplishment to sit up for a few hours at this point, and it’s possible she’s going to end up in the hospital or on lots of IV treatments or something). And yet she says she’s more functional than I am at the moment. Yet another interesting scenario of a couple of gimps attempting to take care of each other (hopefully she won’t be attempting any more wheelchair transfers of me, though, because last time she did that she dumped me on my face ;-) ).