When I was first diagnosed with epilepsy, it was so hard for me to find a good doctor, especially when you don’t know anyone with seizures who can give you recommendations. I was interviewing a bunch of neurologists from San Diego and all the way up to Orange County. My mom gets a recommendation from my Grandpa’s doctor. My Grandpa had lung cancer that spread to his brain. So that doctor recommended this new epilepsy doctor at the Hoag hospital. His name. Dr. David Millett. Apparently, he was was like an “epilepsy doctor celebrity”. That’s the best I can describe it. When we met him on our first appointment he says “You don’t need to get another opinion”. Why does he need to convince us that we should trust him ? But whatever, I needed someone ASAP.
First we begin testing to see if we could find something that is causing my seizures. The MRIS, EEGS, PT/CAT Scan, etc. There was nothing we can find. No groundbreaking results. So, the trial and error of medications began.
All of a sudden, after numerous nocturnal (tonic clonic, grand mal, whatever “the big ones” are called) seizures and medications were not working. I started getting bad vibes from him. I understand that doctors have a lot of patients and they are so busy to keep up. Every patient is different. We had videos of my seizures and when we asked if he wanted to see them, he responds..” I know what seizures look like”. Um ok. I think everyone experiences different seizures but sure Mr. Cool guy. It just seemed like he didn’t care.
He never really greeted us when he came in the room. No like “hey how is it going”. Complete silence until we ask him something. Then at the end of it, he says “are we done?”, it seemed like he was kicking us out of the room. Um ok. One time, I went by myself to my appointment. We are in the middle of talking and his phone rings, he takes the call and it’s his wife! I’m thinking it’s some kind of emergency or something. They have a conversation about buying a house! I don’t need a loving relationship with my doctor, if they are smart, blunt and right to the point, I don’t care. But they should act like they want to help me. Be respectful of my time. Not kicking me out of the room or taking calls wives about buying houses.
I started to look into different opinions from other epilepsy doctors in San Diego. I went to at least 5 neurologists and found a woman neurologist at UCSD epilepsy center that I liked. Dr Leena Kansal. She wanted to move faster on my medication dosage and do another sleep deprived EEG. I’ve done so many of those I feel like it’s waste of money and time for me. Especially if they STILL can’t find anything in my brain. Nothing was getting better, these seizures are still not controlled, she was moving along with the plan trying different medications and nothing came out of the EEG (I expected that). She got pregnant with twins and took a leave of absence. I mean good for her, but things were moving so slow with my medication plan and my seizures are still hot. So my mom finds an excellent doctor at USC Keck Center. Dr Christi Heck. I really like her. SUPER smart. She asked us questions that other doctors never asked. It was hard for me to explain the whole history of my seizures in the last 3 years. So I wasn’t good at documenting them all. I probably gave her a lazy history, bad on my part. It was a wake up call for me to get my shit together and start tracking them better.
So I found her. Dr Heck at Keck. It’s a drive to see her every other month. San Diego to LA. I have to take a day off work, but she is worth it. She is aggressive to see more data and fiddle around my medications. Finding the right “cocktail” of meds. She put me in the hospital for more testing, but again nothing groundbreaking, I’m still a puzzle. She is a neurosurgeon, so technically I’m on the surgery route. To be continued…