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.)