jessica
i'm going to.
but, i'm going to be calling her from a pay phone outside of a 7/11. i just never got a phone. i don't need one....
i'm a little apprehensive. are you aware of any reasons why nana would want me to call her? and am i better off getting them in an email than outside a 7/11?
i'm still vlogging daily adventures, however exciting or trivial:
https://www.youtube.com/channel/UCinQSeEtF0vSN1XVhQGfwKA
sister
why don't you use gmail to call? that's how i do it. i don't have a phone either.
at its most simple, i can only think that she wants to talk with you. i'm not aware of any kind of 'situation' having occurred that might be relevant.
i hope all is well. let me know if you'd like to remain in contact otherwise. we are still in montreal.
(pause)
in a freak coincidence, i clicked on a random video and you are talking about mri results?
i have this in my anterior left lobe:
https://en.wikipedia.org/wiki/Arteriovenous_malformation
after numerous scans, etc., i was told that they don't usually find something like this unless an autopsy is requested/performed (as a result of an unexplained death due to a brain related incident).
anyway, the more you know.
jessica
the last time i checked, that didn't work in canada. maybe it does now.
my vascular loop is behind my ear. i'm getting the hemi-facial spasms and the vertigo. there's some hearing loss. i had a period of aphasia last year that they told me was a common migraine side effect. except that i don't really have a history of migraines.
i managed to catch myself on camera sputtering out:
https://www.youtube.com/watch?v=lgNetAISshM
it's after a long rant about the wisconsin primaries..and i'll warn you that it's pretty disturbing.
(although i didn't mention in the video that somebody gave me a handful of marinols of unknown dose at the son lux show the night before and i hadn't slept much in several days)
i don't how related this all is. the doctor wanted to check for a tumor, but i didn't think that was right. it's hard for me to explain what it feels like, other than that something in there is crooked - as though i feel off a bike and it never healed right or something. i was thinking i had a pinched nerve or a dislocation or even a bone fragment. the vascular loop is sort of like a pinched nerve, actually - what they're saying is that a specific nerve is tangled up with some blood vessels behind my cochlea.
i'm actually going this afternoon to talk to an ear doctor about a broader understanding and some tactics. my understanding is that there may be a surgical procedure to untangle the vein from the nerve. i can deal with a little bit of a facial spasm, but i want to save my hearing! i'm not done with recording yet...
and, you basically have the same thing. i guess that's a strong argument for genetics, especially considering what happened to dad. when they scanned you, did they inject you with gadolinium? because i refused this. i just don't have symptoms of cancer, and it's been bothering me for years. i'm wondering, now, if maybe i should request a deeper scan.
i sent you the email because my immediate thought is that it has something to do with mom. i would think, otherwise, that if nana wanted to talk to me, she'd ask mom to send me something over facebook. well, i'm going to call her soon...
sister
if gadolinium is the stuff that makes you feel like you peed your pants, then yes. fucking weird. i had multiple mri scans as well as a full cat.
they told me what i have is basically a clump of veins that doesn't drain properly, resulting in an intense feeling of pressure at the base of my head where it meets my neck. i, however, DO have a history of migraines, although i strongly believe them to have been hormone and diet related, as i have not experience one in a very long time.
do you also have pressure or discomfort in your sinuses or anything? that's all related in there. you may recall that i had my tonsils removed at the age of 27 (apparently THE MOST painful adult surgery), due to extreme inflammation. it definitely had effected my hearing, though i was not aware of any quantifiable difference until after they had been removed.
anyway, keep me posted, i'm interested to hear what they have to say (pardon the pun).
jessica
i'm actually going to get the sinus thing clarified today. it said something like "mild sinusitis". which i'm interpreting as meaning i had a cold..
i sneeze a lot. i tell people i'm allergic to nitrogen (and i'll probably marry the first person that actually gets the joke, rather than asks me what season that allergy is in). it's never bothered me enough to really figure out.
but they did pull something out on the scan.
gadolinium is a radioactive isotope designed to make bumps in the scan glow a little. one of the things i wanted tested for was ms lesions. it just struck me as an insane to inject me with a radioactive isotope of an earth metal when i had no real symptoms of cancer. but, it's apparently standard.
if they injected you with something, it was probably that.
the reason i'm asking is that the scans say the brain is "grossly normal", which *actually* means they can't see anything but can't rule out that a deeper scan would find something. i was happy with that until an hour ago...
sister
i was never asked whether i wanted it or not, it was simply a part of the procedure so far as i understood. if my neurologist considered it necessary, i didn't really think to reflect on it first.
ground control to major tom.
also, in case you were not informed at some point, you have a niece.
jessica
yeah. i'm not letting anybody inject me with anything until i figure out what it is first. it's a low probability concern, and probably at least as safe as a vaccine, but there are some potential neurogenerative side effects and what i think is a pretty high certainty that it's going to linger in your fatty tissues. what they're doing is basically injecting you with something that is completely foreign to your system (it's a specific isotope of an *earth metal*) and then assuming that your liver and pancreas can flush it out of your system. but, not only do i think that assumption is sketchy, i even think it's kind of obviously wrong. you could think of mercury as a comparison. small amounts of mercury that you ingest will stay in your body for years and years. in fact, if you ingest mercury, you're probably ingesting it from an animal that ingested it - and it got stuck in that animal's tissue, then isn't going to break down in your stomach and will instead get stuck in your tissue. and, sure enough, if you do a little research online, you'll see that there is evidence that that's exactly what's happening with gadolinium. so, you may be walking around now with some glowing earth metal build-up in your fatty tissue....
but, i mean, nothing's completely safe, right. i just saw it as a question of risk management. if i thought i had an advanced stage of cancer or something, a little bit of gadolinium in my fatty tissue would be a minor concern - and the small risk of a reaction would be reasonable to take. as it is, i saw no good reason to gamble on it.
it's the kind of thing that your doctor didn't design. the radiology department knows how to operate the machine and read the scan. the "contrast agent" is coming to you from a chemical company - like bayer or dow. and, these have historically been pretty disinterested in anything but maximizing profit. bayer ran the fucking gas chambers in nazi germany. and, google "bhopal incident" if you're not aware of it. so, i'm not saying not to trust your doctor. but, i am saying that you might want to think twice about trusting the corporations that are manufacturing the technology that the doctor is using, under the realization that your doctor is not a chemist or a technologist and probably doesn't know much more about how it actually works than you do.
i went down a winding path to end up at the doctor today. my gp initially wanted to send me to a neurologist, but i insisted on ruling out an ear infection before i jumped to something more complex. i didn't have an ear infection, but i remained convinced that there was something fundamentally wrong with my ear so the ear doctor suggested i do a hearing test to see if they could infer something, and it did come back with some hearing loss that she deduced must be due to pressure behind the ear. so, i went for the initial scan to check for a tumour. i was always skeptical about this but i thought the scan may pick something else up. the initial scan was inconclusive, so they wanted me to come back for a second one with the gadolinium; i did the second scan, but without the gadolinium. this is where they picked up the vascular loop, which i should point out is a controversial cause of the symptoms i'm experiencing (but which *is* associated, however weakly, with essentially all of them).
what the ent told me today was that because the vascular loop is behind the cochlea, it's out of her expertise and i need to see a neurologist. i'll need to see the gp again in early november.
sounds like a waste of time, but i actually think it worked out the way i wanted it to because now i can go in to the neurologist with some specific information about my ear and with ear related issues ruled out. i think being thorough is more important than playing probabilities.
sister
i care so little about the majority of the medical profession at this point that none of us have a doctor. if there is an emergency situation, i will deal with it then, instead of having 'regular checkups' with someone burnt out, not necessarily relevant, and barely in re/cognition of myself or my family.
my tests were done almost 10 years ago. i know the thing is there, but i would never have a surgery to deal with it, so it is what it is. i'm not aware of any hearing loss, though i do feel some pressure in my head still sometimes.
you can also tell the neurologist that your sister has an AVM, and your father was afflicted with a GBM. that will more than likely affect the way you are perceived and potentially diagnosed if there is any deeper or further cause.
as for the test, are you really so concerned about the metal in your system? i mean, you smoked for over a decade...just saying.
jessica
but, i also quit smoking. mostly. habitually. i'm still smoking a little bit. like i say: it's risk management. but i think that maybe the disconnect is in realizing that we're talking about metal poisoning. if somebody told you they were going to crush a metallic rock up into a powder and inject it into your veins, you'd probably want to think about that; if the doctor just says "hold still, this is going to hurt for a second", it just never registers.
sister
you call yet?
jessica
yeah, i just got off the phone with her over google voice. an hour and a half. typical nana. but there was no issue, she just wanted to talk...
i have a voip mailbox that costs me a buck a month, which is useful for doctors and government agencies and stuff, and i've just been using a payphone for years to make outgoing calls when i have to. google voice is actually what i wanted to do when i moved down here, but it wasn't available here at the time. so, this is useful to know.
i will eventually get a used android phone and connect it to voip. for now, this is going to save me from standing outside and dropping coins on answering machines.
sister
do you want me to add you to my 'updates email' list? once a month or so, i send an email to a bunch of folks with pics of the kids, etc.
jessica
not really, no.