Got a research request from MIT

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Heavy Kevy

Stalwart
Messages
342
Reaction score
200
Points
93
Not only MIT but also a research doctor that works with my neurologist.
MIT was given my name from the surgeon I’m working with. They are offering a $100 check and up to $500 for travel and lodging. I would be required to go to their campus for a scan before my inter cranial surgery. Then the rest of the testing would be done when I’m in the hospital. Sounds like they’ll be hitting a few buttons and asking me some questions when I’m wired up.
I’m going to try and make it. I’m only a 1/2 hour away, so I can take an Uber. Unless my wife wants to go to dinner and see a show. Maybe we’ll spend a night in a hotel in Cambridge. 😀
 
Well that was a trip.
Slid into the MRI machine with a helmet that had a mirror so I could see a screen. Here’s the best I can describe some of the things that happened. I was in the machine for an hour and a half. I had a device with only two buttons I could press.
They would show a block of 12 or so squares and start filling them in. Think Tetris. It would disappear and you were given two choices, one the same and one similar. You had to choose the correct one either left or right.

They showed images of babies, baby toys, nature, animals, an old shed I remember and many other items. During this they were asking true or false and yes or no questions. The questions were math, hypothetical scenarios and other questions I can’t remember right now. I’m still processing that part.
Swirling stacked blocks different colors. Think jenga. More blue than yellow. Which way would it fall?
Tapping fingers in a pattern then saying GA DA RA LA out loud.
I’m sure I’m forgetting others
Nice facility and super friendly people. They were very happy with the results I provided.
It’s just such a bizarre situation to be in. Glad I was able to experience it.
 
It sounds like a neat experiment, but 1.5 hours in the MRI machine sounds awful. At least you weren't dealing with a herniate disk in your lower back while trying to be still all that time (like my one and only experience in an MRI machine - that was pure torture).

Are you going to get a report/analysis of your results later?
 
The MRI was ok. One spot on the back of my head hurt but they let me adjust it.
I’m not sure what feedback I might get. They’ll be visiting me during my stay in the hospital as well. I also have a team from Harvard planning on doing some testing. Dr. Cash from the CashLab. Kinda arrogant naming the lab after yourself. 😄

I’m building a team and providing any information I can. That’s how I’m looking at it.
 
Got another call today. Asking if I’m well enough in the hospital for more testing. They have a smell test. 👃 they want me to take.
I’m going to request an audio test with the Grateful Dead music playing. Might find something there 😆
 
Sorry for flooding the board this week/month

Tonight I had two of the research Dr’s that work for the Harvard university CashLab run by Dr Cash stop in at 9pm. Apparently they are also designing and building themselves all of the testing equipment. The tests and equipment are for future research. Not particularly designed for my case.
They were two extremely nice people. After they plugged all their equipment in we chatted for about 2 hours as they were watching the monitors. I was wide awake, alert, and felt very open and sociable. I even joked with them about Dr Cash naming the lab after himself. We talked about music, sports, kids, and I was able to discuss my entire epileptic history and asked a ton of questions. At 11 they shut the lights off and were hoping that I would fail asleep so they could see what happens on the other monitors they had outside of my room.
For whatever reasons I’ve only slept a few hours since I got out of surgery last Tuesday. They waited until 1am before coming in to unplug everything, so they could go home. Because I was unable to fall asleep.
They are scheduled to review my case with all the other doctors tomorrow. They’re predicting a surgery that would require removal of the scar tissue from one spot, and a VNS type of device for another spot.
It’s 2am and I’m watching the rain turn to snow over the Boston skyline.
 
😑
Finally fell asleep around 3 and they just woke me up to take my vitals at 5:30.
Snow turning back into rain it looks like. 🙃
 
Last edited:
You should have brought some technical manuals to read. They always put me to sleep. :paperbag:
 
Back
Top Bottom