March 12, 2019

I need brain surgery like I need a hole in my head.

I need brain surgery like I need a hole in my head.

I'm scheduled for brain surgery—internal neurolysis—in about three weeks, as a treatment for the TN. Why brain surgery, when there is medication that can treat the TN?

The medication I'm on, the "gold standard" for TN, is carbamazepine (aka Tegretol, Carbatrol, etc). It does treat the pain—I'm no longer having the daily attacks of excruciating, crippling pain. And it is such a hard worker of a little pill that it also does all sorts of other things for me: brain fog, excessive tiredness, messed-up near vision, and whole pile of other side effects related to the autonomic nervous system. Don't get me wrong—it is better than the pain.

But it is also likely to become less effective over time, until it finally stops working. This has already started happening: I've had breakthrough attacks in the past couple of months. I could increase the dose, but I'd rather have some pain and fewer side effects.

There's also the long-term picture: I’m 39, which is young for TN. I’m approaching this with the expectation that I’ll live another 50 years. TN doesn't go away - it is progressive. So I have to plan for 50 years of treatment. The common factor in TN treatments is that they usually don’t work for a long time, so I will probably have to use them all at some point. I’m thinking of this sorta like a game of tetris, with each treatment being a block and the screen being my lifespan. I know, I know, people make plans and God laughs. But not making a plan doesn’t seem any better…

Anyway, of the treatments, the brain surgery one is most likely to be off the table in my future - it has the most pieces that need to align for it to be a viable option, and those pieces are all aligned in my life right now (decent health insurance, a job with enough sick leave etc, supportive coworkers, good neurosurgeon, good health, and young enough that surgery isn’t risky).

So brain surgery it is. As it turns out, I do need a hole in my head.