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AVM Survivors Network

AVM Left Temporal--Now Aphasia

In 2008 I had LINAC radiation at Johns Hopkins on my AVM in the left temporal area. Dr. Rigamanti said it was in “Park Avenue of my brain”. No bleeds, no symptoms whatsoever. We did angiograms in 2010, 2012, 2017. In 2017 they said it had shrunk down to 1/12 of it’s original size. I had migraines that would blind me prior to the radiation but didn’t have any after.

In January of 2019 I awoke in the night with a sharp pain to my left temporal area–went back to sleep thought nothing of it. About 18 hours later started noticing I was unable to speak. Had a “voice” just could find my words. Best way I can describe it. Took me about 3 days to decide–go to the emergency room. They did CT scan, MRI, EEG–found nothing. Took 7 days for my words to come back. Oh, one other symptom–I could not understand anything I read.

In March of 2019 we did another angiogram and only found the remnants of the AVM–it was 100% gone.

May 24–happened again. I felt the pain in my temporal region and lost my words. Hospital again–CT scan, MRI, EEG–found nothing sent me home. Saw a local (Kentucky) neurologist and he says Migraine with Aura. I don’t believe that for one minute.

Anybody experience symptoms after having LINAC radiation to brain AVM?

Only more seizures. I’ve had 3 treatments in all and 3 different embolizations. Headaches on and off. But it seems like the further out from the treatments the less severe they have become.

My avm is/was also in my left Temporal lobe. I was told inoperable. So all I could have done was 6 embolization over a period of 10 yrs along with 3 gamma knives (radiation). After 10 yrs a good portion of the avm has struck and is considered gone. the other portion is just blocked off with glue. My intolerable debilitating headaches have NEVER hone away. My seizures actually started in April of 07 after my second embolization. You should get mulitple options until they really make sure nothing is going on. Never just believe a Dr!! Go with your gut.

Best wishes Andrea

Carol,

Hi. How long does your alleged aura last? My recollection of reading Migraine by Oliver Sacks is that typically aura last perhaps 20 minutes, maybe half an hour, and then resolve into a migraine headache, or can just go away. I don’t have the book to refer to (I’ve lent it out) but I think it could be aura. I am sure you can get all sorts of things as aura, including aphasia, and I can’t remember how variable aura can be in terms of how long they last.

Obviously, with a “brain injury” where your AVM was, we have to suspect the damage that it may have done in the past, or the damage that closing it off could have done, as the underlying cause of the aura but if there is nothing to be seen on the scans, then there’s nothing that can be done to “fix” the events permanently. However, I would be in favour of having a look on a scan from time to time to just see that everything still looks OK, if it were me.

The other thing worth thinking about if we believe this to be a migraine aura with nothing apparent driving it would be whether you can tell what triggers the events. If the events really bother you, avoiding whatever triggers them could become your best defence.

Migraine aura can be all sorts of things. I had scotomas after my embolisation and angiogram but the worst I remember reading in Sacks’ book was a feeling of fear or dread. Aphasia is in the same ballpark as something quite disturbing but perhaps not rare.

Hope this might encourage you a bit.

Very best wishes,

Richard