Eventually, things get better…
In 2018, after Sarah’s 5th, and hopefully final, Gamma Knife surgery, her brain was once again cooked with another dose of gamma radiation. The choice to have another surgery was hard – for one thing, we now know that each iteration of the surgery can create additional brain injury symptoms, which feels like having another brain injury. But also, each iteration has brought us closer to our goal, which is helping malformed vessels and veins to swell shut. This decreases the chance of future bleeding in the brain, which can result in death or disability. So, this decision was a no brainer, but what happened next was mind boggling.
The last Gamma Knife surgery was focused near the sensory and fear area in the left side of the brain. The biology of the brain had been excited multiple times before, which added more symptoms and complications. But this time, we were confronted with episodes from a dark SciFi movie. After that last surgery, Sarah started having all sorts of weird episodes, and I thought that she was losing her mind. We learned later the episodes were atypical seizures. The seizures continued to increase in number, intensity, and symptoms. Those episodes were triggered by extreme sensitivity to light, certain sounds, and smells. Although Sarah was somewhat aware each time she had a seizure, she also entered a frozen state where her facial expression changed, with uncontrolled shivers and fear. This included lifting her feet off the floor and looking around, as though enemies were coming. As a father, this was hard to bear, but that was nothing compared to what she was going through.
During this time, I was staying with Sarah for several weeks in order to help her and her husband. Prior to that, she had a plan all lined up, including proposing her dissertation, in which she had already made headway, then application for internship, and completing her dissertation, so she could defend it before starting her internship. All of those plans were scattered by a storm of atypical seizures. So, the proposal was delayed, but she managed to complete her internship application in hopes of getting better by then. I don’t know how she managed to do any work, I guess it helps to keep busy to reduce the added anxiety. After Sarah maxed out on one seizure medication, the doctor added another one, and things started to turn the corner. Later, I went to New York City with Sarah for an internship interview, and while she did well, she was having all sorts of seizures around the time of the interview, due to the added stress.
After a period of relief, which allowed Sarah to do some catching up and relax a bit, things started to take a downturn again. Things were constantly changing. So, with much regret, Sarah opted out to cancel this round of activities and try again the following year, basically delaying everything by one year. Then, the Covid-19 pandemic was raging, and things were no longer certain, including her PhD program. I mean, how could she continue at this stage? But she was already delayed, and further delay could cause her dismissal from her program. This was very stressful to her, and those of us who provided support. To add another matter of inconvenience, their plans to fund their expensive rent in the Bay Area went belly up. These were extremely challenging times.
But no one gave up just yet. The doctors ordered all sorts of extremely specific testing over the following months, after which a Vagus Nerve Stimulation (VNS) implant was recommended by the neurologist. This VNS device is like a pacemaker, but for the brain – it sends electric shocks every few minutes to help manage all of her seizures. The VNS surgery was successful, but some people can lose their voice while the VNS is firing. Sarah was one of them, but later she started to make jokes about her funny voice. Now, with maximum dose of two seizure medications and an implant, things slowly started to get better. It takes about 3-6 months for the VNS device to start showing results, and it did. Sarah still had the occasional typical seizures, and a few manageable atypical seizures, but now that they were slowing down, she was able to manage. As a result, she started reshuffling her plans back into action.
In 2022, Sarah defended her dissertation, applied and interviewed for her internship, moved from California to Florida, and started her internship in September. While Sarah’s seizures have been improving, they are still coming when you least expect them. The last two grand mal seizures happened during Sarah’s internship, one during a meeting with her group of interns and supervisors, where she had 2 back to back seizures. Thankfully, she was sitting down, and her colleague was sitting close by. The other while riding in the passenger seat, next to her husband, on the way home from work. But this last seizure, lasted over 25 minutes, and only stopped after the paramedics administered Ativan to abort. She was transported to the hospital and admitted for testing, luckily everything was okay and she was released two days later. This was hard to write, as tears from eyes keep on falling – I think that’s a song by UB40.