Wednesday, March 19, 2008

(Clever Title)

If you have to get one bizarre disease in your life, one that defies diagnosis and makes doctors scratch their heads, one that'd land you on a not-happy ending episode of "Medical Mysteries", one that would make Hugh Laurie sit outside your room with his chin resting on his cane, don't pick the one bizarre disease with the word "encephalopathy" in the name, okay?

'Cause it would suck. Hard.

"Encephalopathy" means "brain disease". It can be caused by a number of things: everything from kidney failure to liver failure to mitochondrial failure to viruses, bacteria, and fungi have been implicated in the different forms of encephalopathy. "Encephalopathy" is also used as a catch-all term for the "God Only Knows" diseases--the things we can't diagnose except on autopsy.

This has been Encephalopathy Fest Month. Every third person and his brother has some form of brain swelling, sterile meningitis, or GOK disease. What that means for us, practically, is that there are a lot of people with balance and cognition problems getting lumbar taps and having to be babysat so they don't wander naked down the halls.

Taking care of people is a weird business to be in. It's never weirder than when you're split in two (so to speak)--watching somebody go down the drain with astonishing speed and feeling bad about that, while at the same time being pissed off because their drain-circling is accompanied by annoying, time-consuming symptoms and problems. 

Taking care of people on a neuroscience ward is particularly pissing. There's so much that we do in hospitals that's routine--like giving pain medicine or various electrolyte solutions--that can cause symptoms that mimic the progression of disease. I've spent a lot of time over the last three weeks trying to figure out if the person who can't remember her own first name is suffering from a narcotic overdose or simply losing neurons at an ever-increasing pace.

I had a patient go down in a big, scary way. Not in a heart-stopped, start-compressions sort of way, but in a neuroscience nurse scary way: she forgot who her brother was. She forgot her name. She forgot what year it was. She couldn't repeat a phrase I said to her, and kept word-salading everything. She stopped making sense and started making trouble over the course of a shift.

So we stopped her drugs. I reversed the narcotics and benzos. We started one thing after another, tried to get an MRI (no go; as she got mentally less with-it, she became physically more active), tried to get a CT (ditto, even with me in a lead dress holding her hand), got an EEG, did neuro checks every hour, managed a lumbar tap somehow...I finally cracked in a quiet, professional way, after I'd spent two hours dodging punches and kicks while trying to keep her down after the lumbar tap.

And you know what? Every. Damn. Test. Came back negative. There's *something* wrong; there's *something* in her brain that's making it light up like Christmas in New York on an MRI film. But we don't know what it is. Meanwhile, her family is flipping out because she's obviously not right, I'm flipping out because she's a danger to herself and others, and the docs are flipping out because they don't know what's going on.

I've worked with one of our neurology residents now for better than six years. I've never had reason to doubt his competence or his intelligence. I've also never heard him say what he said that evening: "I don't know. I've never seen anything like this before."

So. Don't get a generic encephalopathy, okay? At least get something diagnosable. You'll save everybody, including yourself, a lot of trouble.


Anonymous said...

That sucks!

Anonymous said...

Very good advice, my friend.

Anonymous said...

I would have add Creutzfeld-Jacob's disease (I think that's how its spelled) to the list of neuro stuff I wouldn't want...

I actually sat in on a conference about a genetic case (not the bacterial kind) once, and spent the next month freaking out about having it every time I forgot where I left my keys...