(My wife, Cynthia, suffered brain damage during open heart surgery at the Cleveland Clinic in Ohio twenty months ago. This post is our story of her trying to get relief from seizures and the medicines to treat them. See the end of my previous post for more about this.)
On my flight back from Texas, I was seated next to a woman. I thought that she was very attractive and we smiled at each other. We exchanged sentiments about how happy we each were to be going home, and I couldn’t help but notice that she was flirting with me. I tested the waters and flirted back, and enjoyed her warm, genuine smile. This woman had life in her eyes and although I could tell that she was tired from travelling, she was very animated and alive.
I couldn’t help but compare her to Cynthia on our trip to Texas. Cynthia was anxious, apprehensive-but-hopeful, and her eyes were dull and foggy from the prescribed drugs she had been taking for the past twenty months since her open heart surgery.
You are probably wondering who the woman was that I was sitting next to. Did I get her name? Did I do something stupid? The answer is no, I didn’t have to. The woman next to me was Cynthia.
Our week in the epilepsy wing of the hospital was grueling. On the first day she had a state of the art 3T MRI (photo source):
Then we found our way to the epilepsy department and checked in. The obligatory hospital gown followed and a team prepared her for the week of testing. After an RN took a complete history, a young man who was in training to be an Air Force med tech applied EEG electrodes to her head. This would allow the team to record her brain waves 24/7 for the entire week:
Then he wrapped her head in a gauze bandage and gave her a fashionable chin strap. A pony tail of wires drapes over her shoulder and connects to a
black blue box that is then connected to a 25-foot cable wired to the wall behind her bed, then connecting to a monitor located down the hall. This cable allows her to get to the bathroom but doesn’t allow her to leave the room:
The doctor and her physician assistant (we liked them a lot) explained that she was going to discontinue Cynthia’s meds so that she would have more seizures. The techs explained that they were going to flash strobe lights in her eyes so that she would have more seizures. And the whole team explained that there would be two nights of sleep deprivation so that she would have more seizures. And more seizures she did have, perhaps a hundred in four days.
And forcing a smile behind tired eyes:
With the 24/7 video camera, we felt as if we were on a reality TV show. One night I climbed into bed with Cynthia to watch a video via Netflix on the Samsung tablet. About half way through, the tech that was watching us came into the room and said I couldn’t be in the bed because I wasn’t the patient. Liability and all that stuff. So we pushed a couple chairs together and continued the movie, the camera swiveling to our new location. Here’s the camera and the ultraviolet LED illuminator for watching us at night:
By the end of day three the team had enough information to make a preliminary diagnosis. The team spent the fourth day looking for zebras (potential but unlikely causes for Cynthia’s seizures). On Friday we met with the doctor and physician assistant.
The results of the testing were very rewarding and made the week eminently worth while. It seems that for the past twenty months Cynthia has been misdiagnosed and over medicated with all the wrong medicines. She doesn’t have epilepsy, but rather non-epileptic “events” from a “shower of blood clots” during the open heart surgery.
This “good” news makes us very happy because Cynthia won’t need to be on those dreadful drugs for the next 30 or however many years, and also because she doesn’t need brain surgery to remove pieces and parts of malfunctioning brain cells. Yes!
Now, a very small amount of the correct medicine has already made a world of difference. Although we just arrived home at 3:00 this morning, she is already more alert, happier, and looking forward to living a normal life (is there such a thing?) and getting back to sewing, working with seed beads and hot glass, and working to make our new house a home.
Here is a happy Cynthia on day five getting the electrodes removed, just before being discharged. The glue is a very durable goop and needs a greasy, smelly acetone-based solution similar to nail polish remover. She was an even happier camper after she washed her hair the third time(!):
There is still healing to be done, but now life is again worth living. She is excited and I am ecstatic!
Thinking back to the journey home, I am delighted to have sat next to that lovely woman on the airplane.