You had an entire day ahead of you.
October 1, 2015 8:46 PM   Subscribe

"A tumor stole every memory I had. This is what happened when it all came back."
posted by flatluigi (19 comments total) 63 users marked this as a favorite
What an amazing story. I am still trying to process. Thank you so much for posting this flatluigi. Human consciousness is indeed an amazing thing. To paraphrase ghost in a shell:

And where does the newborn go from here? The [neural]net is vast and infinite.
posted by AElfwine Evenstar at 9:19 PM on October 1, 2015

Truhfully, I wouldn't have made it to surgery. The cognitive decline would have, I am afraid, led me to a course of action that would leave the world minus one dork that steals nicks/domain names from William Gibson.

Put glibly, but true.
posted by Samizdata at 9:42 PM on October 1, 2015

An amazing story. It made me feel for the recent loss of Oliver Sacks even more. I think his telling of this story would have been incredible.
posted by aureliobuendia at 10:13 PM on October 1, 2015

Wow. That was fascinating. The mind is amazing and baffling. That guy is one helluva writer, too.
posted by davidmsc at 10:54 PM on October 1, 2015

davidmsc: I think that's what hit me the most about the article - the man can write incredibly well and that too was completely taken from him by the tumor. It's amazing he was able to come back from it all like this.
posted by flatluigi at 11:07 PM on October 1, 2015 [7 favorites]

He's awfully lucky he didn't just get diagnosed with depression without any of the diagnostic work revealing the tumor.
posted by blue suede stockings at 4:46 AM on October 2, 2015 [2 favorites]

Wow, that's amazing. My work is in the cognitive and behavioral sciences, though not memory specifically, and while I've heard of a few cases where anterograde amnesia has been cured, I haven't seen any that described the recovery of all of those supposedly "lost" memories. I'd always assumed that it was mainly an encoding disorder, as in patients like the famous HM. But clearly his brain must have been encoding those experiences all along.

Haven't got the time for a full lit search now but it looks like one other case from 2004 pops up quickly. From the abstract, the patient who recovered is described as a "53-year old woman who developed severe anterograde amnesia due to a third-ventricle craniopharyngioma strongly compressing the MBs [mammillary bodies] and, to a lesser extent, the right hippocampus." Exactly the same as Demetri Kofinas. Based on the objective tests, the woman is described as having recovered her memory functions fully after surgery, but I'd love to hear an interview with her to see if she also experienced that flooding in of lost information.
posted by informavore at 4:49 AM on October 2, 2015 [3 favorites]

His first half (the decline) sounds like what happened to someone very dear to me. She hasn't made it to the second half yet, because they have no idea what is causing it. And it's entirely possible they never will. I'm glad he got his life back, but it still difficult to read.
posted by Mogur at 5:08 AM on October 2, 2015 [1 favorite]

That was a powerful read, but I will cop to a niggling curiosity about what the same story would look like from Lauren's POV.
posted by romakimmy at 5:14 AM on October 2, 2015 [10 favorites]

"Comically unscientific" is a wonderful phrase. Boy, can I relate to that.
posted by lauranesson at 6:22 AM on October 2, 2015 [2 favorites]

Yup, I'm also in the place of "this is happening to someone dear to me, for different and less treatable reasons, and no hope of this outcome", which made this very hard to read. But I'm a big nerd for cognitive science and so this is also totally fascinating from a less personal perspective. I've never read an account like this either. Thank you for sharing it.
posted by Stacey at 7:10 AM on October 2, 2015

That's the most amazing story I've read this year. Thanks for sharing it, flatluigi.
posted by rory at 7:30 AM on October 2, 2015

Great post, thanks.
posted by theora55 at 7:38 AM on October 2, 2015

My jaw dropped when I read the phrase "neural navigation software." I didn't realize we had that technology.
posted by Pfardentrott at 7:41 AM on October 2, 2015

Fascinating read.

My jaw dropped when I read the phrase "neural navigation software." I didn't realize we had that technology.

I could be wrong, but I think it's (just) a program for visualizing his brain on a monitor, so that when they put the catheter into his brain, they know "Here comes the amygdala, let's go a little to the right and try not to pierce right though it."
posted by sour cream at 8:07 AM on October 2, 2015 [1 favorite]

My jaw dropped when I read the phrase "neural navigation software." I didn't realize we had that technology.

I think sour cream's interpretation of that is probably right, but check out the images of white matter tracts that we can take with MR, they're still pretty amazing.
posted by Ned G at 9:04 AM on October 2, 2015

This was a wonderful read.
posted by erlking at 9:25 AM on October 2, 2015

I couldn't help but think of how many people could be (are probably) suffering from the same diagnosis yet not have the luck to meet their Dr. Greenfields.
posted by Dolley at 10:16 AM on October 2, 2015

it wasn't luck

Their prognoses, though not shocking, were nonetheless unacceptable. My father, also a doctor, would spend the intervening days sorting through thousands of available studies dealing with pediatric tumors, determined to find someone, somewhere, who could offer us something better, something whose side-effects I could live with.....An offhand recommendation from a pediatric oncologist at the Dana Farber Institute at Harvard University led my father through a series of introductions that culminated in my appointment with Greenfield on Manhattan’s Upper East Side.

posted by lalochezia at 11:54 AM on October 2, 2015 [1 favorite]

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