So I Have a Lesion in My Brain
It’s super fricking rare, and a little dangerous, so maybe I *am* a special snowflake?
So yesterday, my neurologist listened to my new and worsening symptoms of Trigeminal Neuralgia and a few other new nerve problems not in my face, and he frowned and said, “We haven’t talked about your mumble mumble mumble yet…”
The mumble was actually the words petrous apex cephalocele but I couldn’t really comprehend that at the time. “Can you write that down in my patient handout?” I asked him, as he pulled up the brain scan/MRI from all the way back in April, which apparently prominently features my petrous apex cephalocele. “You’re not going to really find anything about it on the internet,” he warned me, “But basically it’s a lesion caused by a birth defect where sometimes tissue, a tumor or a cystic pocket of tissue form in Meckel’s cave, which is this little black section right here,” he said as he pointed to a dark part of the MRI, right in the center of my brain. It looked to be about the size of a dime. “Unfortunately, it’s too close to your trigeminal nerve, and could actually be the cause of your symptoms.” He told me this as I struggled to comprehend what he was really saying. Then I understood as he explained a bit more.
He was saying that it’s not necessarily the blood vessel wrapped around my nerve that’s causing my Trigeminal Neuralgia, it could also be this weird, malformed cave in my brain which is housing some sort of small monster, that is now bulging out and into my spinal fluid, and also poking towards my trigeminal nerve. It could also be pushing on my spine, causing these small forms of sciatica, which are causing electric shocks sometimes and pain in other places, including my legs and feet, but only when my medication is failing, which it has been for a few weeks.
I really wish I could find a photo on the internet to describe this better — but there’s really nothing that shows how my brain is formed right now. Don’t worry — this is a real thing, and there are dozens of medical papers written on this malformation. Read far enough past some of the medical jargon and you’ll find it’s a special birth defect that can actually cause spinal fluid to leak into your ears and fricking kill you. It can also make you deaf, which is a bit more scary and likely to me. (I have always had hearing problems, and I have never uttered a word to doctors about it, because this is a result of childhood neglect that I prefer to pretend never happened or existed. Now I am not so sure.)
My brain-cave-bulge isn’t trying to kill me, not just yet, not as far as they know. But it means that I may have one of the rarest causes of Trigeminal Neuralgia out there, but they won’t know until they’re inside my brain. Oh boy. (Even if it isn’t causing my TN, it could cause other problems, but I’ll get to that later.)
That’s the sick trick this disease plays on the doctors; they won’t know if it’s caused by a blood vessel wrapped around your nerve, or a bulge pushing against your nerve, until they remove all the possible causes. They basically won’t know until they’ve cut you open, removed the possible offending causes, and a few days after surgery you tell them it doesn’t hurt anymore. On top of that, though, there’s this possibility that the pain remains, because the nerve may be too damaged to fix, and you’ll still end up on medication your whole life, but if you’re lucky the pain isn’t that bad.
I am not ready for surgery — it’s an option and probably inevitable from the percentages out there — but my neurologist is going to consult with several of the Residents (and I wish it was the band, but no) to find out what kind of surgery they will theoretically offer me. My doctor is a good Dr, but he is very young in comparison to the other doctors at Georgetown, and I am actually the first patient he has diagnosed by himself with Trigeminal Neuralgia. So, he wants to talk to more experienced doctors, and neurosurgeons, and even some neuromuscular specialists. Sounds pretty scary, right?
I wonder what they will say. I won’t find out for a month.
The thing is that I am having serious breakthrough pain, and I started on this medication (oxcarbazapine) last April, and now, I am already on 1800 mg a day. It only goes up to 2400 mg a day but the goal right now is none — absolutely zero — breakthrough pain. Your body gets used to pain, is what doctors believe, and then it gets more receptive to the pain messages, so they must be eliminated completely, if possible. My medication options are going to be changing once I hit the highest dose. Every time the dosage goes up, I have to get my blood taken to make sure that other body parts — liver, kidneys — aren’t failing. It’s a helluva drug, and not the fun kind.
I feel silly but I came home and wept off and on for a few hours. How can you not weep when they tell you there’s a lesion in your brain? The weeping helped me write a letter to a distant relative I’d been putting off for nearly a year because I wanted to deliver good news to her, and all I’ve had for almost a year is medical news, and now a death of a person I loved, which I at least get to leave out of the letter. But now this news is still bad news, but it finally makes some things make more sense. And it’s okay to weep. And she won’t know, so there’s no harm.
Weep it out, I told myself. My poor, sweet significant other, who was trying to finish his workday, had to hear my sniffles and sobs in the other room. I had already told him, and although he did not weep with me, he folded me in his arms because that’s all he could do. Then he went back to work and I sat down and sniffled and let the tears run all the way to my neck.
I don’t want to have brain surgery. (PS this surgery will now be 10x as hard to do…) I don’t want to have brain surgery. I want this crappy disease to disappear. I want a miracle. I don’t want to have brain surgery.
I am tired of medical journeys. I wrote the other day about my healthcare, and how it will probably be taken away, but I have a contingency plan. The idea and worry about changing doctors, etc makes me numb. How can I try to finish school when I am weeping and worrying about the hole they want to cut in my head?
Life goes on, even if you’re in terrible pain or they’re getting ready to cut a hole in your head. But jeez, if they repeal Obamacare, I’m going to have to rush toward getting that hole cut in my head, and that means sometime this year or the next. And that is terrifying, too. But I am told I am lucky that I qualify for surgery, medically speaking — so many people with TN never find a potential cause at all in the MRIs. So I am lucky. And this petrous apex cephalocele (which those medical papers actually call a “disease”) is so very rare that they don’t even have a statistic for it. Trigeminal neuralgia is pretty rare, too — only about 45,000 people in the US have been diagnosed with it, currently.
