Well, I definitely thought that this less-invasive radiosurgery was going to go extremely well, without problems. Maybe that's because the doctors had pretty much told us that?
Jared pretty much spent 3-4 days in bed with a headache (which we expected), then he was ready to go back to work after the long holiday weekend. He did pretty well for a few days, but he was feeling quite a bit of pressure. He was REALLY fighting having to go back on steroids!!! But about a week after surgery, he started having multiple seizures, one after another. I was starting to wonder if they were ever going to go away. Finally after about two hours of back-to-back seizures, they did stop. Jared was getting worried and started asking about going to the ER. As worried as I was, I was pretty sure there was nothing they could do. The only reason for the ER is if you don't know what's causing the seizures. We knew he had just had radiation on his brain the week before, that there was more than likely swelling, that he probably needed to be on steroids, and to top that off, he had forgotten to take his anti-seizure meds that morning. So it was pretty much a recipe for disaster. I called the doctor the next day and they put him on steroids again.
We did have another MRI in March. I thought we got to have a two-month break, but his neuro-oncologist wanted to have one a month after surgery. And unfortunately it looks like MRIs will be every month now. Anyway, there wasn't anything shocking, he has a hole in his brain again with swelling or fuzzy stuff around it - could include cancer cells - basically the same thing we were told after his original surgery, so nothing new. He has another MRI towards the end of April.
This past couple weeks have been pretty stressful. He keeps getting migraines and minor seizures. He's pretty much had a constant migraine for the past 5 days. He also feels a lot of pressure in his head. So we get to play the guessing game. (Have I mentioned before that we both HATE the guessing game? It's not fun!) I think as of this morning, I finally have it figured out. Last February (a year ago), they put him on a drug called Topamax in addition to his anti-seizure meds called Keppra. They added Topamax to get the seizures under control (He was already maxed out on the Keppra dose). He hated Topamax because it made him feel dumb. He felt like he couldn't carry a normal conversation. It also made him lose his appetite. He got off of Topamax around August because he hadn't had any seizures in a long time, and he was off of the steroids. Well, Topamax helps seizures but it also helps migraines! So my theory is that last year when he was tapering off the steroid, he probably would've had seizures and migraines, but the Topamax took care of it. Again, that's just my best guess. There are so many different things to try to figure out, and so many different things it could be, it gets stressful!!! And it's not fun to see him day-after-day feeling horrible. So I'm trying to talk him into going back on Topamax. But as of right now, six weeks after radiosurgery, life is still very much a daily struggle. We were told it would be a four-day struggle, so for some reason we can't catch a break!
