About once a year or so I get an EEG. This isn’t because it is necessarily required, but my neurologists (plural now) can’t figure out what’s wrong with my brain. It’s as if they need to keep checking that my brain is screwed up. My friends have a few guesses as to why, but the doctors can’t scientifically prove any of those.
I have so many studies on record: EEGs, ambulatory day EEGs, video monitored hospital stays, MRI, MRA, MRV, and coordination tests. (They want me to walk in a straight line despite my huge thighs not making that possible.) So what’s another test? I actually get pretty excited about the EEG itself. My main anxieties arise from dealing with insurance and setting appointments. This time I had to deal with a few misunderstandings, a rescheduling, and a 30 minute stay in the waiting room because of a snafu.
The waiting room was an interesting experience. I was the only one there until these two Old White Guys (OWGs) arrived with a newspaper. One said, snidely, something about ‘that Hussein in the White House.’ Then they pointed at parts of the newspaper that made them feel OWG rage, cursing up a storm. There were several statements about the incompetence of congress, with a stop off at “why do they have 5,000 laws they can’t get through. Just make 5 or 6 and vote on them.” (This writer interprets that to mean that he wanted everything shrunk down to a one-size-fits-all type of lawmaking. You know. Like back in his day.)
There was a brief break when OWG 1 noted Shakira had a new baby and how cute it was. I think OWG 2 was thrown off by the knowledge of someone named “Shakira” being in the news. (FYI, this image is all that’s available of that baby as of right now.) They left the room after this bizarre interruption and I pondered what they were really mad at. Maybe the Hussein comment wasn’t coming from the Fox News Cult. Maybe they were moderates joking around and yelling at representatives from both sides.
OWG 1 returned. The news was on. The discussion: Hillary Clinton’s career. No discussion of current events. Only a brief mention of her problems with the terrorism misinformation. It was just her. OWG 1 stared. Lingered. Finally said, “damn bitch” and walked off.
Uh. So this was supposed to be a post about my new head wrap: Instead of normal ambulatories where they glue the electrodes on, this hospital used a type of paste. I thought that was great because the glue makes it look like you have horrid dandruff for two weeks. But how do you keep these pasted things on? A friggin’ gauze headwrap.
Two days. Two days. Twwooo daaayyysss…..
I know my last post was kind of a freak-out. I’ve been going back and forth with the doctor (and his assistant) to find out the results. Apparently the test results were “normal”. I requested that my doctor call me personally to explain this. Unfortunately I had my phone off at the moment he called so I got his message which was basically, “Everything looks normal. The brain is supposed to be asymmetric so it’s fine.” I got my family and friends worked up for what my doctor says is nothing, but I’m still wary.
I feel the image does not portray a healthy brain. If it is something that I would be at further risk for, I need to know. I’m also disappointed because if this was evidence of an identifiable source, we could treat my illness better. It’s either back to square one or I take the results to a different neurologist.
I’m sounding whiny again! Blah. Sorry and I’ll be back to posting other content later this week.
I remembered last minute yesterday that I had to schedule an MRV. An MRV is like an MRI, but for the brain veins. Thankfully it only took a few minutes (as opposed to previous hellish experiences). I managed to get one today, which was excellent since my “authorization letter” expires Saturday and the rest of my week is sort of booked.
The reason I really needed this test (on top of everything they’ve been checking for) is that the neurologists have no f**king clue as to what is causing the epilepsy. I’ve had this since I was 15 and it has done nothing but get progressively worse and require more and more meds (as covered by several posts). The MRI & MRA helped none. The 3-day stay at the hospital only confirmed that I have mini seizures, which also confuse the doctors. My neurologist finally said the MRI kinda sorta showed some swelling that could be caused by veins.
I am always excited to look at images of my internal bits. That might sound narcissistic or just plain weird, but I know I’m not alone. I got a CD of what had been scanned and immediately viewed it when I got home. I’ve captured some images so you can see what the cold, loud machine came up with:
So you may notice something that pops out right away. I am not a brain expert, but that doesn’t look quite right. I then did a shit-ton of research. No, I did not go to WebMD or Wikipedia as a first stop. I started Googling images of brain veins and asked about blood flow for certain veins – the problem seems to be in the sinus (or transversal?) veins. I know veins aren’t symmetrical and I wasn’t expecting that, but damn if it doesn’t look like I have no matching vein on the right side and a bit of a bloated left side. Finally I came up with several hints and an eventual diagnosis: Cerebral Venous Sinus Thrombosis.
Okay. Uh. What does that mean? I finally hit the wiki and saw this: CVST is a rare form of stroke caused by blood clot. I haven’t had a stroke. I’m not aware that I’m prone to blood clots. Both Wikipedia and several Neurological Journal/data sites confirmed that a sign of Thrombosis is seizures (and bad headaches which I sometimes get, but blame on the computer). So does that mean I’m going to have a stroke? Not necessarily, but the concern is there. Am I going to die?!? Maybe not.
This is what a normal brain’s veins are supposed to look like:
This is what a CVST brain looks like:
(Source is the Radiology Assistant which depicts a couple of examples of the ones that look like mine and have the same diagnosis of Thrombosis.)
I am known as a semi-hypochondriac. I will take things to extremes only when I have a major query (like, I don’t assume I have pneumonia as soon as I get a cold).
My neuro buddies: tell me if I’m over-reacting. I talked to my dad and said I was a little depressed since there is a, albeit low, death rate. I got the “if it was that bad, we’d be hearing about it on the news. Don’t tell your mom, she’ll freak out. And don’t worry until the doctor tells you to worry” speech. I’m not *dreadfully* worried, just concerned that it is a serious thing, as everything related to my epilepsy is. And maybe there will be a hopeful outcome, but I’m kind of perturbed by both the research and my father’s shitty reaction. Updates when available (which may not be for a few more weeks).
(Still hesitating on the next Disney post because it is villain related and that decision requires much contemplation.)
I’m writing just a short post today. I slept most of yesterday until this morning and then it was time to go. This morning I got to watch a video of my seizure. Having only eye-witnesses describe it for me before, I can say those descriptions can’t capture the sheer terror of actually seeing one. It’s like watching a possession.
For clarity on the possession metaphor: At the start of the seizure I bolted upright (I have no recollection beyond this point). I began screaming and my head twisted all the way to the left. Then began the regular seizing where I shook uncontrollably. The nurse showing me the vid said the first part indicated there was… another type of seizure going on with the right side of my brain? The general seizure covers both hemispheres, but the way I twisted my head indicates one side was affected first. This was confirmed by some other activity they had been monitoring.
Anyway, I said I’d make this a short post. I’ll have more info on what happened when I visit my doctor in a month. The rest of today was spent trying to scrub the glue out of my hair. If you have electrodes on your scalp they use the most annoying adhesive. When they dissolve it and you can wash it off, it looks like you have really bad dandruff for a week. Good thing I don’t have anything planned until the end of the month. That’s when I go and visit my BITCHES DOWN SOUTH! *ahem*
I couldn’t post yesterday because having no medication for a day and 4 hours of sleep makes me a zombie girl. I watched a lot of T.V. instead trying to stave off boredom. The procedure is working, though. I can see my brain waves on a little screen and whenever there’s an absence seizure and I catch it I see little blips as it’s happening. After 13 years of being diagnosed I finally have an active view of what’s going on.
They still wanted to provoke things and keep me on for another day. Well that’s fortuitous because no sooner had my doctor left from checking in on me this morning than I woke up from a Gran Mal. So I’ll be even groggier for the next day, but it means I can go back on my meds while they continue to monitor me. I just need to find more crap to do. At least I was passed out for half a day.
The other bonus of being this out of it is it may prevent me from giving in to my urges and starting a tumblr account. Every temptation is behind that, yet I just can’t come up with an awesome and witty name. One that not everyone on the Internet has already come up with and doesn’t think it’s pretentiously stupid. Fine lines on all those criteria.
Not terribly fascinating update, but I did promise updates from the hospital and the point was to try to provoke a seizure, which has been accomplished. If I hadn’t had that seizure this post would have been a lot more uh… verbose? witty? just interesting?
I can’t wait until I can go to the bathroom without a chaperon again.
From Tuesday to Friday morning I will be going through a Three Day Video-Monitored EEG. Once again I dive into the breach of medical experimentation. This will be the most comprehensive procedure so far, though not necessary for all epileptics. The reason they want this is because I’m still getting little “episodes” (petit mals) while on the drugs and the previous EEGs only picked these up as blips. I’ll be taken off my meds to see how worse the episodes get and how they are related to my seizure activity.
During this week I’ll try to keep you posted. This is contingent on whether I have wi-fi. They said I could bring in all my electronics (laptop, DS, DVDs) as they want me to stress my brain out as much as possible. I can call people (need stress? call family!) and have visitors, but it’ll only be three days so I may not get so bored as to call everyone in my phone book.
I may also be doing some video monitoring of my own since I’ve stolen my mom’s handy video camera for a little while. I don’t know if anything interesting will happen, though. I’ll keep this updated with that info. The only things I can imaging letting everyone know about is whether or not I have seizures and how badly I start hallucinating by day 3 when my brain realizes it’s not getting it’s fix of heavy duty neurological medication. Yay brain chemistry! I’ll try not to make any hospital food jokes or show too many images of me as I’ll be covered in wires and wearing my comfy pants.
And if nothing happens, I’ll just post more pictures from tumblr: