I got home almost a week ago. Just taking some time to absorb it all and get back into my life.
I had really thought I’d be leaving the hospital with answers. Solutions. But no. Instead I have more tests to do. And more questions. The doctors haven’t outright said they are more confused than before, but they don’t have more answers. So take that as you will. They’ve seen things from my results during this stay that they’ve never seen before and it has only led to more questions and for me more frustrations.
As far as my brain goes, I don’t want to be different. I don’t want to have things happening in it that are ‘new’ and out of the ordinary according to multiple neurologist at a top epilepsy clinic in a country that is pretty well off as far as healthcare goes. Not the best I’m sure but we’re not a third world country and we’re known for pretty decent healthcare. Anyway, my doctor had to meet with the hospital manager to request a special test for me since it’s a newer test he wanted to run and thought he could do it while I was there, since I was already there. The test has been active in Canada for under a year and requires a nurse to sit with me 24/7 until I seize at which point they would inject a radioactive dye. The part the absorbs the most dye is the part of the brain from which the seizure originated from. I did go for a similar test here in Kelowna last summer/fall but it only required me to fast and stay calm in a room before the dye was injected. The premise being that time the least active part of the brain would absorb the least amount of dye and would be the most likely part to have seizure activity. This time, would be the opposite, it would be the most active part that would absorb the dye during the seizure. However it would require a full time nurse to sit with me full time to inject me at the moment the seizure starts and the hospital is already short staffed and the procedure is so new to the country, my doctor couldn’t get it approved for me. Especially on such short notice. So I’ll have to go back for it at some point. Because as it stands now, I’m having electrical activity, pulses 24/7 on my right side of the brain which explains my constant headaches and just a forever need to try and keep things as calm as possible. Then, when I get tired/drowsy, and fall asleep I have full blown grand mal seizures that mainly show up on my left side but they aren’t sure if it’s from the activity that starts on the right and crosses to the left where it expands or if it’s own situation.
Until they can conduct more tests to help determine the initial site of the grand mals, my neurologist is going to try to adjust the medication I’ve been taking for a while to see what he can do about the 24/7 right hand situation.
He also said he’s going to put together a panel of the other 5 neurologist at the hospital once all my results have been gathered from this stay to discuss what to do from this point on.
So that’s where I’m at now.
I’m not in a bunker sheltering from war. I’m not dying from Covid-19. I’m just living everyday with a seizure happening. It could be worse. And I know that. But this is my little corner of the internet to get it out.
Happen To You/ ‘Lil Wayne