Neuropsychology

I totally forgot to post my Neuropsychology testing. I probably forgot because it wasn't fun.

So they broke it up into two days. The first day was super personal. I was asked about my family, friends, hobbies. We spoke at length about Ethans father and where he has been for the last...forever. Was it my fault he left? How did I feel about that?
Then we spoke about the twins and how we are co-dependent on each other. He even admitted it must be nice to have people to count on all the time. It's true. It is nice.
Then I was subjected to all kinds of tests, like putting numbers in order and similar. Some were funny. My favorite was when I had to think of as may words as I could starting with a certain letter. The first words every time were swear words. He was not amused. I have a pirate vocabulary.
The second day was a little harder. I was blindfolded and made to put shapes in there place on a board. I felt like a 3 year old.

At the end he told me it was apparent I had some brain function loss- that my intelligence has gone down a little since High School. So of course what I heard was "You are dumb". Then he told me my intelligence will continue to decline for the rest of my life. I heard: "You are going to get really really dumb". (Seriously- this is a side effect of Epilepsy. Brain function declines over time. This is another reason for surgery. The more seizures I have, the more it effects my brain. I need to fix my grey matter folks, it needs to stop.) I started thinking about all the things I wanted to do when I was younger. My dream was always to be a writer. I haven't written anything in ages. So of course I decided it's because I am dumb now. (Kidding, I'm kidding. I'm still super smart. Duh.) I would still like to be able to focus long enough to do something super cool like write though. (This blog post has taken me a couple days to write. I kept getting distracted with...you know...life or whatever)
So there's another thing- as my Epilepsy has gotten worse, my focus has also. I can't pay attention to things for long periods of time. Especially if it's something boring. I've tried college again and again. I can't stay on top of things and lose interest and can't pay attention so I quit. It makes me feel sort of useless, because what am I good for? *self loathing alert* I have recently been thinking about the future. What will I do with my life when Ethan is older? Will I ever be able to be an actual real member of society? Do I want to be? What am I going to be when I grow up? Do I want to get a real job? Career? *Self loathing, hate, bad bad*

ANYWAY, I spoke to my Neurologist and he let me know that he spoke to several Brain savvy people and as a group decided I needed MORE tests before they started cutting away at my brain. The reason is- even though we know which part of my brain my seizures originate- they can't find and pinpoint the actual spot. Temporal lobe is as much that has been deduced. So, even though I have had the MRI, CT Scan, PET scan, EEG, and etc, still my brain won't just give up the spot. The bastard.
WHAT DOES THIS MEAN!? It means I get more things! MORE SCARY MACHINES!! One of them is in California, at UCSF. Seriously, that's the closest one. So I have to figure out how to get there. Although my insurance covers the actual test, the travel is my problem. I'm working on that now.
THEN I have another test where I need to be hospitalized at OHSU. This one is more...well, uncomfortable. I get MORE radioactive fluid and can't leave the hospital until I have a seizure. So they will probably take me off of my meds and wait for the inevitable brain fit. Then they do whatever it is that they do. THEN they watch me for 24 hours, put me back on my meds. After that I can go home. Have I mentioned how hard it is to be away from the boys for more than 24 hours? Because it is. For all 4 of us.

HOW ARE YOU FEELING MIMI? I don't know. I'm ok. I haven't cried or freaked out or anything in awhile. I am on a fairly new medication and have been having some seizure activity. (No big ones, just absence seizures. Chill out) The new med makes me not hungry, which is apparently not a side effect. Maybe I'm just tired of my stupid diet. BUT, only 9 more lbs to lose until I get to a weight loss goal I made 2 years ago. So that's cool.

Question, if I made t-shirts- who would buy one? Like: "I support someone who is fighting Epilepsy" or something similar. I hate GoFundMe accounts. I feel that it's begging. I don't know. I just need to raise money to get to UCSF and there are people willing to help but that last sliver of pride I have is pushing against it. I don't like feeling like people feel sorry for me. Even when they say they don't. Even when they are awesome derby people who I love and admire. I have always kept my social life and Epilepsy as separate as possible. Lately the lines have blurred and crossed. It's something I need to get used to. Right? Right.

Right?
-Mimi

PET scan

Today's procedure wasn't bad.

For those who don't know, I'm having brain surgery. Epilepsy and all.

So last week I had my MRI. What a nightmare.
Today I had a PET Scan and a CT scan.

So a PET scan = Positron Emission Tomography. It's commonly used for cancer patients to image cancer tumors and stuff. It's also used for seizure patients to look for brain abnormalities and anything different. So, say, they found a scar or a spot on my brain, they would know then where exactly my seizures originate from. Last week's MRI came back normal so this was next. They will then take these images and the ones from the MRI to see if anything is different/abnormal/whatever.
With an MRI often people are dosed with a contrast. So the tech takes several images of the brain without contrast and then injects it and takes more images. To explain better, here's an actual doctor's explanation:


"MRI dyes work by altering the tissue's local magnetic field. Normal and abnormal tissue will respond differently to the slight alteration, giving doctors differing signals. These varied signals are transferred to the MRI images, allowing doctors to visualize many types of tissue abnormalities and disease processes. " -Thanks random health page.

Anyway, for a PET scan, what I had today, I was injected with a radioactive tracer. Awesome right? I'm radioactive now! Well, I was earlier. It's likely all out now. I didn't turn into a superhero or a ninja turtle. Bummed. *I did get a nap though.* (From here on, random thoughts and musings will be within *asterisks*. Because it's my Blog and I do what I want)




This is how it went:
Nuclear medicine is in the basement of the hospital. No sunlight. Just buzzing florescent lights and pale technicians. Good times. I went and checked in and then read People magazine. *Seriously, we have made some super STUPID people famous. We should stop* When called back the technician let me know I would be there for at LEAST 2 hours. *Dylan, who came with me, read like half a book. It was forever.*
He took me back to a room and started an IV line (ONLY TOOK ONE STICK!!) and then said he needed me to lie quietly and he would be back to inject the tracer. I could not read, or touch my phone, or talk or anything. In a dark room. For 25 minutes. So I took a nap.
He came back in, injected the tracer, which was in a scary metal tube thing so he wouldn't be exposed to it. It went directly into my IV line. He told me to lie quietly and he would be back in 45 minutes. *By this time I am bored and want a book or something. Nope* I lay there, bored. Listening to shoes squeaking on the floor outside the room. He brought in another patient and left her behind a curtain for her quiet time. I fell back asleep and woke myself snoring. *I was on my back sleeping. And I snore. Ain't no shame in my sleep game*
FINALLY he comes to get me, takes me to the bathroom, *finally* and takes me to the imaging room. It's a machine less scary than the MRI machine. Pretty open. Didn't fill me with utter fear. My head wasn't caged in. I didn't mind. You just lie down with your head in this cushioned holder thing and the bed rolls into the machine. Easy stuff. It's a CT machine also so it's two things in one. I was in there for 20 minutes and good to go. I was advised to stay away from pregnant women and to drink a lot of fluids to flush the tracer out.
If you are interested, here's the Wikipedia on PET scans: https://en.wikipedia.org/wiki/Positron_emission_tomography

WHY ARE WE DOING THIS? Because my doc needs to find out EXACTLY where my seizures originate from in my brain. We know it is in my left temporal lobe, but for the surgery to be a success they need to pinpoint exactly where. If my seizure center can't safely be removed because it is too close to my language center or something, then that's bad. That would mean different options would need to be discussed. We've discussed them before and discussed them. Partial Lobectomy is the thing that makes the most sense for me. My doctor agrees.

WHAT'S NEXT? I go see my Neurologist on Feb 12. We will go over the results of the MRI again, as well as the PET scan and the CT scan. From there we will decide when I will go on to Neuropsychology testing *Just wait, the things I have to do for THAT procedure actually makes me want to weep* THEN we can find a surgery date and this can all be over. Well, you know...

HOW ARE YOU FEELING MIMI? You know, right now, at this moment- I'm fine. I really am. What has been helping me is to look at it all clinically. To be unconnected. I took some photos of my brain today. That's cool. Brains are neat. I don't know if this approach will be good or bad. I guess I will figure it out.

Till next time
-Mimi


OH! Here's a super smart SHORT description on how a PET scan works. Because I am not a doctor and can't explain it totally well.

https://www.youtube.com/watch?v=GHLBcCv4rqk

MRI day

Today was MRI day, the first of many tests and procedures I have to go through before the surgery. The MRI is the easiest because it is the least invasive.
However, I am claustrophobic. Not terribly, but enough to get upset about being stuck in a narrow tube for 40 mins. I had to get the MRI with/without contrast. This means they take a series of images then pull me out and start an I.V.- inject a contrast dye, then stick me back in the machine for more images.
Seems routine. I've had several in my Epileptic lifetime. Shouldn't be too ridiculous right?

I took an Ativan prior, per doctors orders, so I wouldn't freak out and run away. (It only happened that ONE time).
Anyway, I checked in, filled out fun paperwork (Nope, haven't left the country recently. Nope, no pacemaker) and was called back way too fast. I was instructed to put on awesome hospital pants and gown and remove all of my piercings. Always a good time.
I was totally doing fine, then when I entered the room and saw the satan machine. That's when my heart got itself moving.

If you have never had an MRI or are curious, here's a video. The video was made for children. I got no headphones, I got no music. I got ear plugs and pillow things around my head to hold it still.








I was in there for the longest 25 minutes ever. EVERYTHING ON MY FACE WAS ITCHY. But in an MRI, you can't move, not at all. So I played episodes of Supernatural in my head. And went over my shopping list, and thought about world peace or whatever. I DID NOT think about Zombies and what if they happened while I was stuck in the machine. Nope, didn't think about that at all.
Maybe a little. Shut up. Dylan was in the waiting room, he said if Zombies happened that he would come in and get me out. So we had a plan.

After 25 mins of the loudest banging and knocking ever, they pulled me out to inject the dye. Here's where shit gets real.
I have super annoying veins. They are so tired of getting stabbed, so they hide. It takes someone with some skill to draw blood or start an IV. I was still stuck in the head helmet thing and just like, there. I was told several times not to move. EVERYTHING WAS ITCHY.
The MRI tech couldn't find a vein. I directed her to the back of my hand. She couldn't see anything. So she called in Jeff, another tech. He couldn't find anything after tying and retying several parts of my arm. So they sent in tech #3. He found a vein! In my right arm. Things are moving right along. He starts the IV and starts injecting the dye. It hurt. My whole arm got hot, then cold. I started moving and he told me to keep my head still. I told him it was hurting and he looked down and said: "Whoops, blew that vein out"
WHOOPS. WHAT.
He taped it. I told him I was allergic to some of the tape and he wrapped my arms in heating pads and left.
You guys still with me? Remember, I am still laying on the MRI table with my head trapped in the ugliest helmet ever.
Time went by and Tech #1 comes in and tells me we are waiting for the lead Phlebotomist to help. OK. Moore time goes by and Tech #1 comes back and says she is going to try and start the IV. She stabs me once and I swear that was the longest needle I have ever felt. She finds nothing, bandages it. Then thinks she sees something and tries again. Inserts the needle and DIGS AROUND. I kicked straight out. I mean, WTF lady. I would have kicked HER if I could see her. She apologized. Once. Bandaged and walked out. Now I am worried they are going to leave me here forever and use me as a pincushion.
Several minutes later the Phlebotomist gets there. She picks up and arm, makes a mmhhhmm noise, sticks the needle in, tapes it to my arm and walks away. Done. Just like that. Tech #1 comes in and injects the rest of the contrast, puts me back in the tube and leaves. The fun noises start again and I just sort of lay there, thinking about how bad my arms hurt.
I was glad to leave.

Good Times.



















That's my MRI story. MRI's suck.
Next week I have a PET scan. I'll let you know how it goes.

-Mimi