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AVM Survivors Network

Aphasia after dAVF embolization


#1

First, I looked for a dAVF topic, found none.

I just sent this note to UCSF, since I was asked to report significant symptoms. :wink:

Is this significant? I’ve had two odd episodes of aphasia since the embolization. Both happened while “hiking” near 11000’, both while listening to conversation. It starts with fortification spectra in my left lower visual field, the reaches a point where I have difficulty constructing sentences, and some words seem very unfamiliar. I am intellectually sharp at these times; I test myself by deriving proofs in my head, and know what I want to express; the sentences just don’t come out correctly, and sound like gibberish. No issue with balance. The problem has resolved, oddly enough, when I broke off from the group and picked more challenging terrain, even gaining elevation.

I’ve had just fortification spectra ~10 times since the embolization. They are like auras that would precede migraines years ago (I haven’t had a migraine in 17 years), except those were in my right visual field. They resolve within a few hours if I do nothing, or within 20 minutes with hot shower on my head.


#2

Hey,

I have read Migraine by Dr Oliver Sacks. It’s an interesting read, though quite technical. I don’t have it to hand as I’ve lent it to a friend but I am pretty sure that you can get a bit of almost anything, including aphasia as part of an aura.

So what you’re describing is potentially aura, triggered by something. That it resolves in about 20 minutes is typical of aura, too. Several hours resolution would be less typical, I think.

Now, the other thing Sacks says is that proper migraine is benign and aura tends to start on one side but pretty much always traverses the body. He was always suspicious of apparent aura that do not follow that transit: he would suspect some less benign underlying cause, including an AVM.

Now, you know you’ve had an AVM, so you know already that you’ve got something that can induce unusual effects. Equally, I would guess that injecting glue etc. and reducing or removing a spurious blood flow could lead on to some small side effects.

So, I think it would be aura. Is it something essentially benign? It could be but it might not. I would definitely discuss with the doc.

Hope this helps a bit.

Richard


#3

Oh, and I had aura, like your fortifications, for several weeks post embolization and briefly again after the re-check angiogram. Other people have had similar things and we put it down to the contrast material at the time.

How long are you post op?


#4

more than 2 months post-op. The aura radiates out, and by that nature, part crosses over the mid-line, then the entire aura disappears. I’ve had a lot of auras, but few in the last 16 years (had them for 6 months after a device was planted in my heart, thought to be caused by platelet cascades until the device endotheliolized). The only Oliver Sacks book I read was about Tungsten.


#5

I think mine subsided after a month. Then I got a repeat show after the angiogram for maybe 2 weeks.

Worth discussing with the doc.


#6

Already scheduled


#7

Thanks very much for your comments. I found another guy (another site) who had the fortification spectra for 2-3 months after the embolization. I searched this site, and found just one other report of aphasia after a more severe avm procedure.

Does the aphasia part seem at all familiar.

By the way, found an older cover of Sack’s book, with excellent illustration of fortification spectra.


#8

Sacks’ book is excellent. I had never understood migraine or aura and only discovered that I was having aura / scotomas after reading his book some weeks after my embolization.

Here is a link (and link-within-link) to my initial realisation and then reading Sacks’ book: My Update - Dural AVF Embolization

Sacks often illustrates his books with patient stories so if you are diligent and read about Classic Migraine and Aura I am sure you’ll see that there are all sorts of effects induced by migraine. I don’t remember if there was an aphasia example – I think there might be – but the impression I have come away with is that the diversity of aura is part of what characterizes classic migraine. So I am not surprised. The boundary between migraine and seizure seems very grey, too, with either able to carry symptoms of the other to the untrained eye.

I found the images of fortifications and the little black-and-white illustrations or scotoma to be my eureka moment.

Glad to be of service. I’ve got about half way through the book before lending to someone in greater need.

Richard


#9

The illustration on the book cover is what I most used, to explain the appearance to people. I’ve been using the term “fortification spectra” for 40 years, but most people (except a few doctors) had no idea what I was talking about, even if I draw it.

Before 16 years ago, migraines most often came at a time when stress was suddenly lifted. The auras told me I had about 30 minutes till the migraine hit. Sometimes I would get them while driving; in the US, the car is shifted with the right hand, and the shift would be indistinct; that’s how I remember that the spectra used to be on the right side.

I had a PFO in my heart closed 16 years ago by a “device,” and for 6 months after that, I would get just auras, on both sides, but I never had another migraine. The doctors speculated that until the device was covered with heart endothelial cells, it was collecting small clots that would then end up on my cerebellum and occitpital lobe, causing auras. After 6 months (15.5 years ago), the auras ended.

Then after my whiplash 8 months ago, I had 3 more auras. After the embolization in August, I had one the next day, and another 9 over 2 months.


#10

If it’s this cover, that’s pretty much what mine looked like https://en.m.wikipedia.org/wiki/File:Migraine_(Oliver_Sacks_book).jpg

But there are at least half a dozen cover designs.

Mine grew as illustrated but was smooth C shape on the outside with the fortification shape on the inside of the C and rather than being white inside, was blurred, like frosted glass. I thought it fascinating that a visual effect could be so consistent as to be illustrated in a book.


#11

That’s the cover.