This is plain cruel...

[u/The_Dean_France]

[u/neurotic_queen]

I’ve always wanted to donate my brain to science when I pass. I had 500+ seizures (focal aware seizures) for years and it took a long time to get doctors to help. Eventually I had my right temporal lobe removed to treat the seizures. I’d love to donate my brain for epilepsy research but stuff like this makes you really wonder… 😬

[u/korewednesday → u/neurotic_queen]

Here’s how to help do that:

Find the foundations associated with your condition.

So you go to [your condition’s version of] the various large foundations. See what ones do research. Reach out to those ones, ask if they have life cycle research happening; that you’re willing to comply with research and donate your brain for study. Some may be in depth and want regular imaging and you to use specific doctors. Some may just want to get a medical history that they try and keep complete and then not see you again until you pass. Usually the reputable scales with the renown of the foundation and the medical facility it’s affiliated with; for example, there are two Alzheimer’s studies here in Chicago with Rush and Northwestern. I forget which organization is working with which, but again some big names there. Very reputable! Doing amazing work, and the one at Rush I believe is almost finished. I will get to read the findings from the donors I’ve brought there (mixed in with all the others, of course) one day.

I guarantee there are similar studies happening for various forms of epilepsy.

You can also probably donate as a cadaver; a major part of gross anatomy lab is so doctors understand that the real body they treat sometimes only barely bears passing resemblance to its illustrations, and an internal “missing” part may not, therefore, disqualify you. Just like people with no appendix can still donate.

[u/CarobEmbarrassed9837 → u/neurotic_queen]

You don't have to donate your whole body. There are organizations that will recover only the tissue/organs they can place with researchers and then return the rest of the body to the funeral home/family

[u/ak4338 → u/neurotic_queen]

We donated my mom's brain and spinal cord to a university. We contacted them ahead of her death by a few months and had everything ready to go so that when she passed everything could happen quickly since you only have so much time to do it. Once she passed, I called the contact while her body was sent to the city to remove the brain and spinal cord and then it was sent to the university and we received the body back for cremation locally. We later received a report about what was found in her tissues and what type of dementia she had. If you are in contact with a university research group, it's much more reputable than some random institute.

[u/speedboat_jacket46 → u/ak4338]

I studied speech therapy and had to do an anatomy class of the head, neck, and spine. It was incredibly helpful to be able to learn from donors like your mom (it was a very hard class. I barely passed as it was, and probably would've struggled more without the hands on aspect).

I remember on the first day feeling a little uneasy until the lecturer explained to us that the donors and their families had kindly allowed us to learn from them. It really helped me to lock in and was so appreciated.

[u/morningisbad → u/neurotic_queen]

This is an old story and the #1 reason I was not an organ donor (until recently). 

[u/vegasidol → u/neurotic_queen]

Wow. What are the ramifications of removing your right temporal lobe? Did your seizures stop?

[u/neurotic_queen → u/vegasidol]

My seizures thankfully stopped. I’ve had a few possible ones but hard to say since for one of them I was sleeping (woke up with bite mark on my cheek and sore muscles) and for the other ones they were very brief moments. During my seizures I’m completely aware and can even speak normally. But they feel very scary. Déjà vu, immense fear, out of body experiences (sometimes), etc.

Since my surgery my memory is a little worse and it’s harder to learn new things. My anxiety seems to be more intense since the surgery, likely due to having only one amygdala now. From what I’ve read/heard having one amygdala can mean it’s kind of working overtime and overcompensates for the missing one. I’m just glad I’m not having seizures anymore. Most people who meet me and hear my story say they would’ve never guessed and that I seem perfectly “normal”. It’s crazy you can lose a chunk of your brain but still function pretty normally

[u/vegasidol → u/neurotic_queen]

Amazing. Thank you for sharing.

[u/SpecialDirection917 → u/neurotic_queen]

These kinds of places do exist, such as the Brain Bank at the University of Michigan.

[u/hehasmastcells → u/neurotic_queen]

Holy shit. How were you after the surgery? Sounds terrifying. I have focal aware seizures sometimes and on the waitlist for neurology

[u/carlosrueda28 → u/neurotic_queen]

I work in a brain bank, and believe me , we treat every organ with the most respect possible. You should try to see if there is a brain bank near your area. However, as someone else commented, if it can be donated to a research group that specialize in epilepsy it may be better.