Wednesday, 03 April 2019 19:12

Trigeminal Neuralgia Sucks

I am sitting in the corridor outside the surgery waiting room, waiting for a team to drill into my spouse's skull and intentionally damage a nerve.

So, if this is a bit of a scattered, random post - eh, no apologies.

Really, I'm just killing time until hunger sets in long enough to drive me to the cafe, which will kill some more time, before it is back to the waiting room to wait/kill time some more.

The odd thing is that I actually hate this less than i thought I would. The OHSU staff so far have been considerate and professional, which alleviates much of my natural tendency to anxiety (the Tanner nerves, my grandmother used to say). I hate being out of control, always have, but It has gotten especially strong since my year of enlisted military service. I also don't trust easily, whether individuals or institutions. So all in all, I anticipated feeling much worse through all this than I do now.

Not that I have cause to complain, I'm not the one who has been suffering from horrific pain for a year, only controllable with heavy-duty anticonvulsant medication that can't fix the problem. Trigeminal Neuralgia is a vicious condition - so much so that I made an allusion to it in my most recent book as a form of torture used in/by Hel (the Norse version of Hades, named for the daughter of Loke who runs the place).

And all in all, despite the poor luck in being struck by such a rare condition, she has been fortunate overall. We happen to live an hour's drive away from one of the world leaders in treating the condition, and even better - the sub-type of TN she appears to have (it actually isn't formally split out definition-wise, but specialists are on the cusp of showing a genetic cause and, fortunately, have developed a procedure to treat it that boasts very high success rates, especially for patients like her - younger than average, and almost exclusively female.

We're also counting our luck/blessings/random number gods that this is the diagnosis she ended up with (and received sooner than most do). Most women in her situation get mis-diagnosed with multiple sclerosis, and she quite nearly did. While MS isn't life-ending, it isn't kidding around.

TN is its own form of nightmare, and the usual procedure for fixing it doesn't work for the sub-type she has. Worse, there's no cure yet - the interim solution is either physically moving blood vessels that are compressing the nerve (more typical in older patients) or doing permanent damage with ionizing radiation when that fails. Unless, of course, you want to spend your life on high doses of a pretty debilitating medication.

What they're doing to her as I type this is actually derived from a procedure used to treat nerve issues like carpaltunnel syndrome. It would be an outpatient operation, except the nerve they need to comb (yeah, that's the actual term they use) is located just at the point the trigeminal nerve bundle exits the brain. So to get at it, they've got to cut into her skull, in what is technically brain surgery.

That's what makes it a major and frightening operation, because who wants someone mucking around in their brain, no matter how skilled? Cutting the skull open isn't something the body was meant to endure, so the recovery period (mostly from the neck muscles that are in the way and get cut up) will be weeks in length - fortunately, all but the first 2-4 days are at home. So after a night in ICU (awake, but monitored to be extra safe) and a couple days in the hospital, we'll be home.

It is moments like these you can't help but be grateful for being in a reasonably stable financial situation, despite my recently abandoning (ok, puting on hiatus, but until I'm making a solid income from writing I have no intention of putting a lot of time into scholarly work) my PhD ambitions (unless I can somehow get a degree in Europe, where all the researchers who do what I'm interested in live.). She, fortunately, is hyper-competent and has already become pretty much invaluable at her work (local universityone that actually cares about education, so not Oregon State University (hell) or University of Oregon (discount purgatory), so through her work we've got solid health insurance and disability benefits for when she's unable to work.

Not that I couldn't provide these things - i have in the past, we kind of switch off who gets to be the breadwinner and who gets to be entrepreneur - but the peace of mind granted by having them is absolutely priceless.

Which is why everyone, everywhere, should have guaranteed healthcare and a sustainable livelihood. Too bad the United States is dead determined to prevent anyone who isn't white or wealthy from having this.

But hey - that will change, at least for those who live in the states that are committed to providing these basic, fundamental services, when DC collapses entirely and they're left to fend for themselves.

And we happen to live in a region that is richer than the rest of the "United" States, and where 2/3 of the population wants these benefits for all citizens. Better times will come, in a decade or so - for us.

Until then, I'm just glad that what turned out to be a career-killing move to Oregon (for me) has turned out so well for her, in every way. I can be an author anywhere, but access to quality healthcare is bound to a healthy economy, and not every place will have that in the coming years.

Also (addendum), At least half of the doctors and surgeons who have saved the lives of members of my family are either recent immigrants themselves or children of recent immigrants. I literally have no honorable reason to oppose immigration, ever, period-point-blank.

Edit/Update (2 hours later) - operation went great, and now to the recovery. Always nice when things work out as planned! To all the people sening messages, thoughts, prayers, and the like - thank you!