I'm not even sure where to begin, there is so much to say.
At the end of July, I had testing done at Stanford. Major testing. I had to stay there "anywhere from 3 to 10 days".... which is just what a mother of two wants to hear. They hooked me up to a million wires- or it felt that way anyway- and I was basically hooked up to the wall. There were cameras on me at all times, I couldn't get out of bed without letting the nurses know, they stood outside of the bathroom (in case something happened), and I had a GIANT trail of wires from the wall into the bathroom and a purse of wires I had to carry (see photo) and my head weighed like 500 pounds (an exaggeration, sure, but I don't feel like it's that much of one), and I had to just stay there... I could bring my computer, I had a TV, my mom and Randy kept me company, but there wasn't much to do... it was boring. It was depressing. It was emotional. Thank you snapchat for fun filters.
They took me off of my medicine pretty much immediately to see what sort of activity happens when I'm not on the medicine... and pretty much immediately, I had a seizure. And they tried all sorts of fun tricks to try and make me have seizures- strobe lights, sleep deprivation, hyperventilation, etc. It was super great. (Can you feel the sarcasm through your screen?) It was exhausting and horrible and it made my body hurt.
BUT we learned that my seizures are coming from the right temporal lobe, I occasionally have seizures in my sleep, sometimes I have seizures so small I'm not even aware that I'm having them but they registered on the machine, and loads of other fun stuff. The doctors there decided that a 5 day stay was long enough- and THANK GOODNESS. I had Cabin Fever by Day 2.
My doctors were very excited and said it looked like I was a great candidate for surgery. They explained that there were a few more tests I would have to have done to determine everything and then they would have to present my case in front of a board of epilepsy specialists and neurologists and then once all of that was done, we would know if surgery was the thing to do.
Fast forward to September....
September 14th, I had a PET scan. I had to fast for 5 hours and then they injected a glucose solution into my arm to see what happened and how my brain dealt with that. Fun fact: I am claustrophobic. They let me take an anti-anxiety pill so I was nice and relaxed and sleepy. And right when I was starting to become aware of the fact that I was in a giant tube, the test was over.
September 15th, I had a functional MRI. This is an MRI that requires you to "play along" as one of the techs put it. They have you do things like "Move the fingers on your right hand", and you have to move them a certain way- but without moving the rest of your arm, because if you move too much, you'll "move your brain" as the video said, and that will result in blurry images. Or they might show you a picture of a comb and you have to think the word "comb" and think of what you use a comb for. Or it will show you a police car and say "Think of the sound a police car makes" and you're supposed to think of the word "siren" and you're like me and you think "Weeeeeoooooweeeeoooooweeeoooo.... oh shit! NO! Shit! Siren. They want siren! Oh my god. I'm a spaz. Siren!" And then you have to hold off the giggle attack that's about to happen.
During this MRI, I was not allowed to take the anti-anxiety pill, but I was told that they would keep me distracted so I wouldn't need it, but they needed me alert. And you know what? It ALMOST worked... At the end of the test, Bob the technician said "OK, Katie, now I just need to take images, your part in this is over. Just relax. This first set is going to be about six minutes, then about a minute an a half, then about four minutes, then I have to review everything before I can let you go, ok?" And then I felt my body slide up into the tube a little bit more... And the mirror I had been viewing all of the pictures in that was allowing me to feel like I was not in a tiny tube was no longer viewing the outside of anything and was just looking at my feet, and the tube smashed in around my elbows... and there we go. It's OK though, I only cried a little a bit and then the test was over. lol
The thing with the functional MRI, it lit up the areas of my brain that responded to whatever I was supposed to be doing. And it told the doctors which part of my brain was responsible for language and whatever else they were looking for.
September 18th, I met with my neurologist to go over the July visit, the PET scan, and the functional MRI. She said we know the left side of the brain is responsible for language (which is true for most people but we needed to make sure), that the seizures are definitely coming from the right temporal lobe, there seems to be activity there kind of all of the time even when there isn't a seizure and that there is a little bit of activity happening on the left side as well- but she didn't seem really worried about that but we needed to double check that.
She says she is confident we will be able to get me off of my medication with one of three options, but each one sounds just as crazy and scary as the next.
If there is too much activity coming from the left, then I would need to get a implant- this implant would basically shut down any activity as it's happening. The minute my brain starts firing up, the implant would be like "No way!" and stop it. And this would allow the doctors to monitor it and see what's going on and where it's coming from as well.
If it's all just from the right side, I have two options-
There is the laser option, which just kind of zaps the spots where the seizures are coming from and stops them and there you go. But it's a newer option and there's not a lot of data on the long term effectiveness. It's a short recovery period, but who knows if the seizures will come back in like 5-10 years?
And then there is the big surgery where they go in and they say "This is where the seizures are coming from" and they take that part of my brain out. And that is why they needed to know where my language was coming from. They needed to make sure they wouldn't be damaging anything if they went in there and took something out. And yes, that's scary. It's terrifying. And the recovery period is longer. But people have a high success rate with it. And they go seizure free for the rest of their lives with this surgery. And that sounds awesome.
And I know- "Take out a part of your brain?!" I know! .... But guys... Seizures are more serious than a lot of people realize or understand. Yes, I can get seriously hurt while having one, but it's not just that. There are a lot dangers people don't realize are associated with seizures. And I would rather risk taking out part of my brain.
I was scheduled for a neuropsych exam on October 17th, which was the final test to see which surgery option was going to work the best for me, but it was moved to September 25th. This is a series of brain teasers basically, and I'm told this is going to help them figure out where my memories are stored, how other parts of my brain work and if anything else could be damaged if they do surgery.
My short term memory is already messed up and that's because of where my seizures are coming from. My doctor explained that the right temporal lobe is where short term memory is stored, and that's why I can't remember anything, it's probably when my brain is having activity that I am struggling to remember something.
I also found out that my auras- the precursors to my seizures- count as seizures. So all of the times I thought, "Oh that was just an aura, it didn't turn into a seizure", she said it counts as a seizure... so that's disappointing.
Two days ago, Randy came into the living room where I was watching TV, for some reason he decided to check on me. And apparently I told him I wasn't feeling well. He took me to the bedroom to lay down. And thank goodness he did. I had, what he described as a "pretty bad" seizure. My body hurt, a lot. And I was on the bed... surrounded by pillows and soft things. I can't imagine what would have happened if I had been alone in the living room, in the rocking chair that I am sure I would have fallen out of, next to the table I probably would have smacked my head on. It's been two days and I finally feel normal again. Or as normal as I can, all things considered.
Today I am ending the blog with this note: I started this blog not just so I could try make sense of all of this in my head, but so I could try to bring some Epilepsy Awareness.... even if it's just to like five friends... If you read this and now you are made more aware of different seizure types, I feel like I did something, you know? People don't realize there's more to epilepsy than just falling on the floor and convulsing.
Ask your friend who looks like they're daydreaming if they're OK... maybe they're not daydreaming.
Ask your child who is getting in trouble at school for not paying attention... maybe it's not ADD or whatever the teachers want to label them with...
Your klutzy friend who also has bad migraines? Maybe it's something else and she has crappy doctors.
While blogging, I unfortunately had a complex partial seizure.... so another day, another seizure. The count is at zero, but I can't wait until the day I can say "I can't remember the last time I had a seizure".
I blog to sort it out. I blog to bring awareness. Katie VS Epilepsy. I'm determined to win this battle.
Looking lovely in head wraps in July.....
My purse full of wires
