Thursday, April 16, 2009

Do Not Want: The brain edition.

Yeah, yeah, I know. I'm a lazy blogger, posting videos from YouTube and graphics from National Geographic. Tra friggin' la; I have the day off.

Which leads, of course, to what I've been doing recently. 

Which is dealing with encephalomalacia. 

Not my own, thankfully; the brain softening of other people.

See, your brain isn't supposed to be soft. It's kinda firm and resillient (in vivo, that is), with its own lovely network of venous sinuses and arteries and linings and ventricles. It's a thing of beauty, whether you're watching it live through a dissecting scope in the OR or on video.

Except when it gets soft. Then it's not so beautiful. Worse, though, than the aesthetic considerations is what encephalomalacia does to a person. Basically, it takes a productive, happy, loving member of society and turns them into a nonresponsive, snoring shell of a person who's getting fed through a tube.

And sometimes we simply don't know what causes it. We can take biopsies galore, we can run every single test on blood and CSF and urine and what-have-you that the most specialized specialists can think up, we can scan and X-ray and poke and prod...and we still don't know why you've all of a sudden become a lump in the bed.

It's frustrating. More than that, it enrages me. Bad enough that somebody that I grew to know a little and like a lot is dying; why on earth can't we figure out why?

The last time this happened, the diagnosis came back primary leptomeningeal melanoma. That happened years and years ago, when I was first starting out in neuroscience. That particular diagnosis was obtained on autopsy. This one probably will be, too.


This, my friends, is the bad thing about nursing: seeing somebody you thought was getting better suddenly get worse and having no hope of an explanation in time to fix them. The only bright spot is that, since we're hip-deep in researchers, maybe the *next* person won't be so badly off. If we can catch whatever-it-is in time. If they have the same thing. If we can figure out what this is in the first place.


One Nurse said...

I was a neuro nurse for my first 5 years of nursing. It is where my heart is. Therefore, I totally get the frustration of those diagnosis that only come after it is too late. The person who gets poked and prodded and opened up with the intentions of findind an answer only to find there was no answer, just more puzzling information. Those are the patients that hang on your heart. . . forever! Thanks for writing. I enjoy reading your blog!

Penny Mitchell said...

Not to make light (seriously), but I looked it up in the handy-dandy Merriam Webster's site (mostly because learning how to say these words is my new hobby) and their definition is this:

softening of the brain due to degenerative changes in nervous tissue (as in crazy chick disease)

To clarify, they're referring to an actual disease of actual chickens.

You know that's not the first thing I thought of, right?

Anonymous said...

Just curious how you found out about the autopsy dx? We never do hear what they find out which is frustrating - especially when it's something sudden and unexpected and everyone just feels so let down

Jo said...

Anon, the docs will often let us know, if it's something we've all wondered about. Usually, we've taken care of those folks with God Only Knows What for weeks if not months, so it's nice to have the closure.

Molly said...

Jo, I'm a long-time reader (found your blog when my best friend, who has neurosurgeries regularly, wanted some information about lumbar drains and why they seem to lengthen her recovery time so dramatically) but I've never commented. A woman I knew growing up developed encephalomalacia from causes they never determined, and her decline was dramatic and incredibly sad to watch.

Thanks for writing so vividly about such complicated and interesting issues.