AVM Survivors Network

AVM obliterated but new DAVF found


Hi, I am new to the forum and was wondering if anyone else has found themselves in a similar situation to myself. My AVM was discovered incidentally in 2014. In 2015 I had 3 embolisations and in October 2016 I received radiotherapy (stereotactic surgery) to hopefully complete my treatment. All was generally well until I had a Tonic-Clonic seizure in November 2018 and thereafter went through some difficult times adjusting to Keppra. In December 2018, I got an Angiogram to hopefully confirm that my AVM was obliterated. The Angiogram did indeed confirm this but unfortunately identified that I now have a DAVF on the opposite side of my head. I was advised by the Neurosurgeon that it could have been caused by a Thrombosis at some point in the last few years (I did have a TIA in summer of 2016). I am interested to know if anyone else has found themselves in a similar situation?

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Welcome to the site!

I’m sorry about your seizure and the Keppra. From what everyone else says, Keppra is not nice and takes some time to get used to but I think people do adjust to it.

I have only the DAVF but it was adjacent to either a thrombosis or a diminution of one of my major veins and it is that change in flow that I’ve heard attributed to the formation of the DAVF. I believe DAVFs are considered more to be acquired in this way than to be congenital.

DAVFs are also scored in a different way from general AVMs so if you get a low score, it may be the recommendation is just to leave it alone, unless or until you get some symptoms from it. As with your AVM, you’ll go through the same process of diagnosis and the same options re treatment.

Embolization seems a more common treatment for DAVF to me, reading on here, but I think all three treatment types are possible.

Hope this helps. It’s great you found us and my pleasure to help you a little along the way.



Richard, Thanks very much for your response. I have now been told that I have to get another MRI scan to investigate the DAVF further before making a decision on how to proceed. I was always under the impression that an angiogram was the ‘gold standard’ and would provide better and more detailed information than an MRI?


I think the trouble with an angiogram is that it is a focused examination and the doctor looks where he or she believes there is a problem, injecting contrast and checking for no back-flow. Only those arteries that are in question are checked.

An MRI is (or can be, at least) a more general scan, just looking for areas of high intensity blood flow and checking that those are where you expect them to be. So I think it is a better general look-round than an angiogram. I don’t think angiograms are used to do that more general look around – you’d have to reverse the catheter out of each major artery and into the next to check your whole head. It would be a long operation; I think they just look in the vicinity of what an MRI has previously shown.

So I think it makes sense to have had an MRI check and that it has shown something elsewhere in your head.

Hope this helps,