I have been on a lot of medication. And high doses of it as well. And it’s not been the end all cure all that a cocktail of drugs should be. So following a particularly bad attack that took days to get over, my neurologist said the one word I was hoping to avoid ever since my diagnosis.
When I was first diagnosed with Trigeminal Neuralgia I did a lot of reading and research. I learned that this is a progressive sort of thing where at first the meds help and then they don’t and you need higher doses and then you move on to a second anticonvulsant and then that one stops working and then it’s surgery or hell, you pick. I went in to this thinking that I’d try to stay on a low dose as long as possible because I was going to slow that ride down or not need more drugs or something else stupid. My face had other priorities. I started on 300 MG of Tegretol and it just wasn’t under control and then it was upped to 400 MG and then I had the worst attack of my life and upped myself to 600 MG and that didn’t even stop it and then my lovely neurologist said 800 MG and start making appointments because they can take awhile (that depends on how far you’re willing to go for a neurosurgeon).
There are a few surgical options for TN patients, a menu, if you will. A less invasive with a greater chance of pain or facial numbness and weakness or an almost zero chance of pain for decades with an OMG-THEY’RE-GONNA-CUT-MY-HEAD-OPEN deal. Guess where I’m headed with this?
I made appointments at Georgetown University and Johns Hopkins. Georgetown was able to see me in October, Johns Hopkins wanted me the next week but I was going on vacation. Then my doctor went on vacation. Then I got to go up and meet him. And then I was scheduled for surgery ten days later. TEN. DAYS.
They’re cutting my head open. They will squish a sponge in there to make my face less angry.
And this is all happening very very soon. More soon than I’m prepared for.