After nearly two years of living in Arizona, it was finally time to establish a local neurologist. My parents are moving to the Southwest and out of Michigan, therefore I won’t be able to see my incredible neurologist in Michigan any longer. Dr. Z is a neuro oncologist from the Barrow Neurological Institute out here, and I am very pleased with her after this morning’s appointment. If this were Yelp, I would rate her a “10/10 would recommend.”
Naturally, I did some research on her ahead of time. A few papers and research studies popped up per usual. What surprised me was that her social media accounts came up, too. All of the sudden I found myself looking at her tweets and Instagram posts about the marathons she has ran (woah!). At first, I thought it was strange and almost felt uncomfortable. But then I realized that I liked knowing this information about her. Knowing that Dr. Z has hobbies and a “real life” outside of her practice was comforting, and reminded me that doctors are people too. While it might be weird for her to know that I know all of this outside information about her, it makes me feel like I know her a little bit better other than just my doctor with a name tag. It also probably makes me a little bit creepy, though. Oops. No shame.
I felt more nervous for this appointment than going on a first date. In most previous first appointments that I’ve had over the years I have to reexplain my entire medical history starting from the beginning. Dr. Z had already read my case file though and knew my story for the most part, which was a nice surprise. She was affirming and honest throughout the appointment, while also hopeful and kind. Dr. Z also has a family connection to epilepsy because both her sister and mother have epilepsy. In my mind, this makes her work all the more meaningful because she brings an extra sense of empathy to the table that truly understands the toll that these medications and this condition can have on a person and family.
While I only had 4 seizures over a four month timespan during my first semester this year, it has not even been three semesters since, and I have had 7 seizures. WIth that being said, we decided to change my medications and see if we can cut that number down. The new plan after today’s appointment and within two weeks with stabilized medication adjustments is: Morning – 200mg Vimpat, Afternoon – 200mg Vimpat, Evening – 100mg Vimpat with 200mg Zonegran, and Breakthrough – .5 to 1mg of Klonopin wafer. I am extremely grateful that my new insurance plan covers both new medications. Dr. Z mentioned the possibility of surgery to sever the connections causing the seizures somewhere down the line as a big-picture type of view, but that’s something that I don’t think I would ever consider unless I had exhausted all types of seizure medications and other treatment options ever.
I know that I said before that I was done with scans for a little while, and I still believe that. Dr. Z thought that moving on up to an every 6 months scan regimen would be smart, and I conceded with her there. Thus, my next MRI will be in June. I feel comfortable having one over the summer, while also knowing that I’ll only have two (hopefully) scans a year now. When I brought up my fear of recurrence, Dr. Z states that “Of all of the tumors to have, this isn’t a terrible one.” That actually made me smirk. It was something that I had been wanting to hear but no one would say it. This tumor isn’t completely devastating, but it also isn’t nothing. She said that there are some people whose cases you look at, and you can tell them that this is what they’re going to die of. That isn’t definitively the case with me, but it also isn’t something to completely take off the table somewhere down the road. This case and tumor are manageable, and I can do manageable. Hearing those words allows me to breathe a bit easier. When she took a look at my MRI, she pointed out a little section of tumor that still remained, but that had not really changed since my surgery 2.5 years ago, which was good. She said that keeping an eye on my noggin for the next 5, 10, and 15 years are important. The farther out I get from this surgery without recurrence, the less likely it will be for a recurrence to happen.
So, let’s try again. Let’s try to go four months seizure-free again, just like after surgery.