Taking a More Aggressive Approach

Welcome back to the next blog post of Thriving Not Just Surviving.

The rough stretch continued this past week after I experienced another seizure on Sunday, July 15 at 9:20 p.m. After I was brought to the emergency room I experienced two additional seizure episodes which were both severe and extended in duration, resulting in a refracturing of my right shoulder. The total of three episodes forced me to spend the next few days in the hospital. I was discharged from St. Luke’s in Kansas City on Wednesday, July 18.

The biggest point of frustration and concern is that the more we have done in an attempt to remedy the seizures, the worse they have become. Despite increasing/adjusting medicine, diet changes, lifestyle changes, using a CPAP machine, and reducing stress the seizures have increased in frequency, intensity and duration. The most alarming recent development was the seizure that occurred when I was fully awake and walking around. Until now I was fairly confident that I was safe from having seizures during the day. This most recent development changes that.

The continued lack of success has forced us to make some significant changes in our approach to the seizures. A few weeks ago we discussed the possibility of undergoing  comprehensive 24/7 monitoring in attempt to pinpoint the location and cause of the seizures. At the time, our neurologist decided against it based on the risk of monitoring my complex and severe seizures as well as waiting to see if the new medication would work. We now know that the new medication is not working and my neurologist is comfortable with the amount of risk this monitoring will pose.

I am scheduled to be admitted to the Barnes Jewish Epilepsy Monitoring Unit (EMU) on Tuesday, July 24 and may be there for up to seven days. The goal of this monitoring is to learn as much as possible about my seizures and anything abnormal occurring in my brain. The most effective learning method is to induce multiple seizures that are extended in duration in which the neurologists and epileptologists will track using a video EEG. That’s all I know at this point. I expect to learn much more about what to expect over the next few days.

It’s not easy to overlook the risk associated with this approach. It was just a few weeks ago that my neurologist was concerned about broken bones and other complications stemming from induced seizures. At this point I have to put my trust in the doctors and staff at the EMU that they will be able to handle the complex nature of my seizures. Barnes Jewish Hospital does have one of the top epilepsy centers in the country and I’m confident in their ability to have success in monitoring me.

Maureen and I are hoping to do regular posts during my time in the EMU. Stay tuned for much more later this week.