The Awesome SEEG Lifestyle & Experience!

It was a normal summer night in Ohio; weather was warm and the Indians were playing downtown. However, for me it was a bit different. I spent the early morning getting a bunch of tests, and blood work in the afternoon done preparing for the next day. Parties were going on late, but I was in bed early for my 7:00AM wake-up call. I was mentally preparing myself for what was happening the next day; my SEEG. Something not many go through, and will not understand what goes on during the process.

I woke up at 7:00AM, got dressed, and made my way out of the hotel. I put my headphones on as I got in the elevator and kept that playlist going until the nurses told me to turn it off. From the minute I woke up, I took this process like preparing for a wrestling match. It was ME getting the electrodes in the head, not a team. I got to the waiting room, and it was all good as my parents and myself were laughing about what was going to happen in the next week or two. As I went into the OR, my mom wished me luck and my dad said “it’ll be just like the other four you had!”

When I woke up from the anesthesia, I quickly realized that yes it was like the other four surgeries I had (probably easier). I got rolled up to my room in the EMU, and that’s where the fun happened! I met with my doctor to go over exactly what was going to happen, and yes, my parents were in there too. He talked about how they were going to be taking me off my meds, what the process would be like when I had a seizure, etc. I began to make myself at home introducing myself to the nurses, and coming up with fun things to do during my stay. If I have any “Friends” fans reading this, my code word for when my seizures were happening was “Friends” ;). I was ready to take this two week wrestling match head on. Not sure my mom was though?

They slowly began to take me off my medicine to induce my seizures. The light and sound was going off like crazy the first night. I was a little confused because it didn’t feel like I was having any. The nurses and myself realized that because my seizures are so quick, by the time they arrived to my room, I was well back into it. It was kind of funny making the nurses run all the way to my room for nothing. On the other hand, I was getting no sleep at all. We all laughed about it, because we knew the grandmals would come eventually.

No seizure is a fun seizure, but being in an EMU is the best possible place to have one. It was about a week and a half into the SEEG when my first grandmal came. I couldn’t tell who was hurt the worst after a grandmal, my mom or me. Yes, it’s always scary to have grandmals, especially when you haven’t had them since third grade. However, the way I was raised allowed me to say to myself “bring on the worst seizures” because I knew I was in great hands and that’s the reason why I was having this test done. Those grandmals were definitely not cool, but well worth it during the SEEG.

Two weeks later I walked out of the Cleveland Clinic with a towel over my head covering up the Iodine to head back home. I had this test done in 2015, and within the four years we’ve found multiple treatments that I could move forward with. For anyone who has had this done or is getting it done, please know that your medical team will continue to look at your results for years to come. It may not be a fun few weeks, but in the end, it’s worth every minute.