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 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.)