• Neuromancer49@midwest.social
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    24 days ago

    I ran a lot of MRIs for my PhD. I saw somewhere around 100-200 different brains. About 10% of them had abnormalities. Of all the technicians, scientists, and (non-clinical) doctors I spoke with, we all agreed this was a very high rate of discovery. All my friends graduated without seeing anything weird. My advisor liked to joke that I was cursed. Eventually I stopped inviting my friends to do my experiments because I didn’t want to deal with the risk of them having an abnormality - thanks to some combination of HIPAA and medical liability laws, I wasn’t allowed to say anything about it, even if asked point blank. I didn’t like that very much.

    I made one exception, as a friend of mine came in for a study and I saw a golf ball sized cyst in his sinus. He had it surgically removed and he told me he stopped snoring the next day. It felt good to make a difference for him.

    But, I saw one brain similar to the one documented here. It belongs to one of my close friends. It was harrowing. Entire left hemisphere was malformed, the ventricles were way too big and the cortex was way too thin. But the right side of his brain was underdeveloped, maybe the size of a tennis ball.

    The weirdest part, he is 100% normal. In fact, he competed at a high level of college athletics. Normal Cognition, normal motor function, great sense of humor, and a very caring person. Now he has a great job, wife and kid, and we hang out often. But I can’t bring myself to say anything, and every time I see his son I wonder about his brain.

    • FilterItOut@thelemmy.club
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      24 days ago

      thanks to some combination of HIPAA and medical liability laws, I wasn’t allowed to say anything about it, even if asked point blank

      Are you sure that you understood that right? In every study I’ve helped out with, and when I’m dealing with patients, rule #1 is that the participant/patient has access to their information produced from the procedures and gets counseled by a doctor involved in the process if anything is found. There’s a neuroscience professor who famously recorded his own experience in the textbook he wrote, where he participated in an MRI study because his insurance wouldn’t approve an MRI. The tumor was found in the study, passed over to his healthcare team, and they were able to use it to get the surgery approved.

      • Neuromancer49@midwest.social
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        24 days ago

        That’s the short of it - but we passed all brain data to a university affiliated neurologist for review. We also allowed participants to take a copy of their brain data if they wanted. I’ve got a CD of my own brain kicking around somewhere, and I even helped a few people 3D print their brains.

        But, anything that I said about the participants brain opened me up to liability. What if I said their brain looked OK and there was a tumor? Or vice versa? The University felt I could be sued, so we were trained to not speak about their brain.

    • ddash@lemmy.dbzer0.com
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      24 days ago

      I can just imagine you at their garden party, sweating, while your friend brags how their son is doing so well at school but seems to just not understand some really mundane topic.