On Wednesday we visited with Dr. Rosenow at Northwestern Hospital in Chicago. He would be the surgeon implanting the VNS device on my Vegus Nerve and running the wire to a battery put in my chest.
His resident was great. He asked me a lot of questions and really seemed to want to know about me and why I was interested in the device. He had great bed-side manner and I felt calm while he was in the room. I don't remember his name but I should've written it down for this blog.
Then Dr. Rosenow entered the room 15-20 minutes later (a significantly long time to keep a patient waiting if you ask me) and could've been more obnoxious. I take this disorder very serious and to have an appointment for a possible surgery, I expect a doctor to be more professional and to understand that we're under a lot of stress. He made jokes about taking my whole brain out because it "makes the men more docile and the women like that, but we'll keep the sports part of the brain in!". As I've explained before, the VNS wire wraps around the Vegus Nerve in my neck like a spiral, but he asked us if we knew what a curly fry was, then he explained the VNS as "three curly fries wrapped around the Vagus Nerve". I'm a grown, educated person and I feel like he treated us like we were in grammar school. He was loud and animated and just not what I would expect from someone who is going to dig deep inside my neck and chest. Apparently he comes well respected and I trust my Neurologist, Dr. Michael Macken (for which Dr. Rosenow referred to as "Mike" which I thought was very unprofessional in front of a patient).
Dr. Rosenow seemed like he was pushing an experimental procedure on me where my scalp was removed (while I'm awake!) and "electrodes" would be implanted deep inside my brain, then a wire would run down to a battery in my chest. Dr. Macken and Dr. Rosenow are going to talk and see if this is a good option for me, but I can tell you now that it will NEVER happen. 1.) It's experimental and only 100 or so people have had it done. 2.) My Epilepsy (in my opinion) is not that bad to where I need major brain surgery, and this would be major, major brain surgery. 3.) The procedure has too many if's and there are risks of brain bleeding and possible paralysis or coma (which he said have happened).
I know I'm at the end of options because medication isn't working but I don't think I'm ready to have my brain "removed" for science.