When I was about 15 years old, I had my first grand mal seizure. A couple weeks later I had another and officially became epileptic. I started to see a pediatric neurologist at Royal Oak Beaumont and I was beyond pleased to have him as my doctor. He prescribed medication to keep me from having grand mal seizures, but occasionally I would have some less severe seizures. (I won’t bother to go into detail for this blog post.) When I was old enough to move on from pediatrics the doctor recommended I go to the University of Michigan hospital or the Henry Ford hospital. My parents and I decided on the U of M hospital. Huge mistake…
At first we were fine with their neurology department. We went through the typical deal where we played around with different medications but couldn’t find the right combination. So we decided to try surgery. The surgery was in January 2011. They cut open my skull and put EEG leads over my left temporal lobe and observed me for ten days. They lowered my medication a little to induce seizure activity. They had me stay in the ICU overnight after the surgery and then moved me to the general medical unit. The doctors wanted someone to always be in the room, so they had my mom stay with me for the rest of my stay. If I went into a seizure they told her to click the nurse’s button. She ran into it more than once where I would go into a grand mal seizure, she’d click the nurse’s button but no one would come into the room. One time she went into the hallway and angrily yelled, “My daughter is in a grand mal seizure right now. Is anyone going to come and do something about it?!” For another seizure the EEG technician came into the room after and apologized that no one came in during that episode. Just a couple of multiple examples showing how the don’t give full respect.
After the ten days of observing me they did a second surgery. They first removed my EEG leads, then they removed a (tiny) section of my brain that they thought was the area where my seizures originate. They told us before the surgery they weren’t 100% sure on the origin location but had enough confidence to try. They still had me taking my medications after I left the hospital and I was confident we finally had control. As it ends up, they didn’t solve my case.
My mom decided we needed to try a different hospital. We made an appointment to one of the best hospitals worldwide: Mayo Clinic. I had the same medical procedure as U of M. They opened my skull, put the EEG leads on my left temporal lobe, and had me stay bedridden in a hospital room. At Mayo Clinic, they had me stay in the ICU for the entire time I had the EEG leads on my brain. There was always a nurse in the room, so they didn’t require my mom to stay.
After observing me for about five days the doctors at Mayo Clinic said the site is beyond where U of M thought. Unfortunately, Mayo Clinic couldn’t safely perform surgery that deep into the brain. If they tried and made even the slightest mistake I would possibly no longer understand language and speech. They said we could try new medications or a vagus nerve stimulator (VNS). They said there would be a 50/50 chance that the VNS would actually help. I had the surgery for the VNS and unfortunately it still doesn’t seem to help. That’s not the point here.
The two hospitals are equally large and sophisticated medical systems, and in my experience, the system at U of M is flawed. The personal care level at Mayo Clinic was different and well managed. The personal interactions with staff seemed much more focused on me and my comfort. With Mayo Clinic, I’d say it’s more than American biomedicine. They are much more one-on-one and give more respect and care to their patients and the families.