Day 1 at the hospital…

This is insane. Right now at 5am, I’m awake. This has to be the fact that I went to bed so early.

Okay. Sat in the waiting room for two hours. Then I was taken to my room on the 8th floor. Took about two hours to get me all hooked to the wires on my head and body for This Video EEG. I have a video camera pointing to my bed 24 hours a day. Only time I can get out of bed and away from the camera is to use the bathroom. Can’t take showers with these wires on my body and I can’t take these wires off. Only able to wear a zip up hoodie and sweat pants. I have all these wires on my head connected to a box about the side as a smaller purse. Have to carry this with me to the bathroom and this box is connected to a cord that is dragged on the floor wherever I go. But I have to get right back to bed to get back on the camera.

Complicated stuff with all this. Now I’m hungry…¬† ūüôā


I’ve started seeing a new Neurologist recently over at Kansas¬†University Med (KU Med). She seems very nice and seems to know what she’s talking about. I was, as per her suggestion, going to get a VNS implant into my shoulder to help with the¬†seizures¬†that I have had all my life and have gone through every type of¬†Epileptic¬†medication there is. I suggested to her that I get a MRI and EEG first just for us to see the status of my brain. So, on Valentines Day, I got to go back to KU Med to do the lovely two tests for the celebrations of the holiday ūüôā to check everything out. Few weeks later I met with the new doc and she told me that from the looks of my messed up brain (not the exact words she used), doing the VNS implant is off the table.

Now she is talking about full-on brain surgery (Temporal Lobe Resection) to cut away the “bad” parts of my brain. This is going to entail a few more tests first. The first one on March 29th, is¬†similar¬†to what would be called a¬†cognitive test (forget the¬†official¬†name). This is an all day test up at KU Med. A week away from now. I’ll have to let you how all that went afterwards. Then after that, on April 8th I get to start a Seven-Day Video EEG. Seven days stuck in a hospital room. I’m either in the bed, in a chair or visiting the bathroom. No showers. No baths (maybe a sponge-bath done by a pretty college girl ). ¬†Visiting the bathroom is the only time I will be without video cameras watching me all the time. Can’t sleep under sheets and have I must have the lights on while I sleep just so that the video camera will watch me¬†constantly. Arg!

Also as part of the Video EEG is the taking me off my meds and a lack of sleep. I’m sure this will cause me to have a few seizures with those things happening (or lack of happening). I’ve read about people doing these EEG’s and the doctors are looking for the outcome from a certain type of seizure. These people were only having grand-mal seizures, and that’s not what they needed. So, they had to do the Video EEG¬†multiple¬†times.

One more test…¬†SPECT Brain Imaging. This is a 2 hour test that entails the injection¬†a radiopharmaceutical (radio-active) one hour before imaging begins. The imaging is done with me laying down and a ‚Äúcamera‚ÄĚ revolving around my head taking 3D images of my brain. The injection of the radio-active stuff shows the¬†blood¬†flow around the brain. After seeing this, the¬†doctors¬†can recognize the areas of the brain that are being used the most and which is used the least

I’ve heard and read that these rooms are pretty nice with a cool TV, fridge and other things. Kinda like a hotel room. Hope I can take my cell phone so I can chat with people while I’m there and brag about what they are missing. ha ha… ¬†I’ll take pictures later when I get in there to show everyone myself and my cool room. I’ll let everyone know how the test next Friday went.

A couple links:


Video EEG: