Hey everyone, Tia here. I wanted to get this blog created so that Tim and I can start writing some background posts before the 13th. What's happening that day? I'll get to that!
Everything started last year when Tim was constantly suffering from mild headaches. They didn't prevent him from going about his days, he would just describe it as a mild annoyance. A "one or two" on the pain scale.
We finally decided it was time for him to visit Zoom care and see if they could give him some ideas about what might be going on. He left with a referral for a radiologist and scheduled his first appointment for an MRI.
Two MRIs later (two because the radiologist didn't get pictures of the correct area and had to have him come back, ugh) we had pictures of his brain with a scary-looking spot near the front.
The following day, the doctor sent him this:
Dear Tim,
I have read the findings of your MRI and there are some changes in the brain and also swelling in your sinuses. The recommendation by the radiologist is to get further imaging. I will order that for you. Please get those at your earliest convenience.
In addition to that, I will put in a referral to the ENT (ear nose throat specialist) for evaluation of the swelling in your sinuses. It is very important that you follow up with the neurology referral as discussed in your last appointment.
Ummmmm ok. I don't know about you, but that black spot seems like way more than just swollen sinuses.
I panicked, went through all of the what-ifs, and spent a few hours pouring through pictures of MRIs I could find online. I talked myself out of cancer or a tumor, it just didn't look right, but then I'm not a freaking brain doctor. I kept coming back to this thing called an arteriovenous malformation, or "AVM" for short, but of course, diagnosis had to wait until we could talk to a professional.
Tim went to the ENT appointment, the ENT told him he did indeed have a sinus infection, but things still just weren't adding up. At this point, someone (I honestly can't remember which doctor it was) told him he had to get an MRA. What's the difference between an MRI and an MRA?
MRI (magnetic resonance imaging) is an image of organs and tissue.
MRA (magnetic resonance angiography) is an image focused more on the blood vessels.
Ok, so it wasn't so much the brain tissue that they were worried about, but the blood vessels. That lined up with what I had read about AVMs.
At this point, we were both talking about the possibility of brain surgery. Yeah. Fun.
His initial doctor, the neurologist, and the radiologist had all said it looked like an AVM (at least it wasn't brain cancer) and that he needed to have an angiogram to confirm. He got a referral for a neurosurgeon at OHSU who also said the same thing. He wouldn't diagnose anything for sure until the angiogram was done, but he agreed that it looked like an AVM.
The neurosurgeon gave us more details about AVMs (which we had pretty much read everything about online), and how they are basically a "tangled bundle of blood vessels where arteries connect directly to veins with no capillary bed between." He also told us that they were sometimes referred to as a "nidus" and us being the nerds that we are, we couldn't help but laugh. It was like the "nydus worm" from Starcraft! (If you know Tim you'll know that he can find the humor in anything.)
Ok, back to the angiogram. To quote some medical site "An angiogram is a diagnostic test that uses x-rays to take pictures of your blood vessels. A long flexible catheter is inserted through the bloodstream to deliver dye (contrast agent) into the arteries making them visible on the x-ray." We left the appointment and Tim started making calls to get this angiogram scheduled.
They did some bloodwork, just to be sure that the angiogram wouldn't be a problem. Everything came back fine except his vitamin D was a bit low. (Honestly, I think everyone in Oregon suffers from low vitamin D during the winter.)
The angiogram was scheduled and now we just had to wait.
November(ish) of 2018
Everything started last year when Tim was constantly suffering from mild headaches. They didn't prevent him from going about his days, he would just describe it as a mild annoyance. A "one or two" on the pain scale.
December
We finally decided it was time for him to visit Zoom care and see if they could give him some ideas about what might be going on. He left with a referral for a radiologist and scheduled his first appointment for an MRI.
Two MRIs later (two because the radiologist didn't get pictures of the correct area and had to have him come back, ugh) we had pictures of his brain with a scary-looking spot near the front.
 |
| Top View of Tim's Brain |
The following day, the doctor sent him this:
Dear Tim,
I have read the findings of your MRI and there are some changes in the brain and also swelling in your sinuses. The recommendation by the radiologist is to get further imaging. I will order that for you. Please get those at your earliest convenience.
In addition to that, I will put in a referral to the ENT (ear nose throat specialist) for evaluation of the swelling in your sinuses. It is very important that you follow up with the neurology referral as discussed in your last appointment.
Ummmmm ok. I don't know about you, but that black spot seems like way more than just swollen sinuses.
I panicked, went through all of the what-ifs, and spent a few hours pouring through pictures of MRIs I could find online. I talked myself out of cancer or a tumor, it just didn't look right, but then I'm not a freaking brain doctor. I kept coming back to this thing called an arteriovenous malformation, or "AVM" for short, but of course, diagnosis had to wait until we could talk to a professional.
 |
| Side View of Tim's Brain |
MRI (magnetic resonance imaging) is an image of organs and tissue.
MRA (magnetic resonance angiography) is an image focused more on the blood vessels.
Ok, so it wasn't so much the brain tissue that they were worried about, but the blood vessels. That lined up with what I had read about AVMs.
December 11th
At this point, we were both talking about the possibility of brain surgery. Yeah. Fun.
His initial doctor, the neurologist, and the radiologist had all said it looked like an AVM (at least it wasn't brain cancer) and that he needed to have an angiogram to confirm. He got a referral for a neurosurgeon at OHSU who also said the same thing. He wouldn't diagnose anything for sure until the angiogram was done, but he agreed that it looked like an AVM.
The neurosurgeon gave us more details about AVMs (which we had pretty much read everything about online), and how they are basically a "tangled bundle of blood vessels where arteries connect directly to veins with no capillary bed between." He also told us that they were sometimes referred to as a "nidus" and us being the nerds that we are, we couldn't help but laugh. It was like the "nydus worm" from Starcraft! (If you know Tim you'll know that he can find the humor in anything.)
Ok, back to the angiogram. To quote some medical site "An angiogram is a diagnostic test that uses x-rays to take pictures of your blood vessels. A long flexible catheter is inserted through the bloodstream to deliver dye (contrast agent) into the arteries making them visible on the x-ray." We left the appointment and Tim started making calls to get this angiogram scheduled.
December 28th
They did some bloodwork, just to be sure that the angiogram wouldn't be a problem. Everything came back fine except his vitamin D was a bit low. (Honestly, I think everyone in Oregon suffers from low vitamin D during the winter.)
The angiogram was scheduled and now we just had to wait.
I'm glad your research and talking to doctors came back with pretty clear and also not-cancer results. I've had an MRI with contrast, do they use the same machine or at least, is an MRA still laying super-still in a big, noisy tube that bangs around a bunch?
ReplyDeleteAlso, clearly if this has the possibility of improving future cognitive and motor skills on top of your currently already high INT brains, you will clearly be ALL THE MORE POWERFUL. Fingers crossed you get (selective) mind reading abilities like a Terran Ghost (to continue to the StarCraft refs) :)
You got this, man! Stay strong and thanks for documenting your process <3
Thanks so much for the kind words!
DeleteI think the only difference is the MRA has the contrast dye to "light up" veins and blood vessels.