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AVM Survivors Network

I'm Confused

Hi,
I’m new here and it’s taken me a few weeks to pluck up the courage to write. I’m female, early 50s with both parents having fatal brain bleeds. My mum had both an AVM and brain aneurysm. We didn’t know she had the aneurysm.
A few months ago, I was told I had a 1mm infundibulum after an MRI/MRA with contrast. A CT of carotids showed - '‘a 2mm aneurysmal outpouching arising from the infero-dorsal surface of the left internal carotid artery…there is no clear vessel arising from it so it’s likely to be a tiny PCOM artery’.
My headaches are on the right and I think there’s a ‘hidden’ AVM there. I also have bilateral basal ganglia calcification - my mum’s AVM was in her basal ganglia.
Now they say it might be a ‘large infundibulum’. From tiny to large, from infundibulum to aneurysm to infundibulum. They want to do a DSA.
What’s the significance of - ‘…no clear vessel arising…’?
As PCOM aneurysms rupture more readily (if that’s what I have), is it too risky to agree to the DSA?
Should an MRI/MRA with contrast and CT of carotids pick up on an AVM?
I’ve not seen neurosurgery yet but will be going in a few days. Hope someone can help.

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Welcome to our group! I hope you find being a part of us valuable and informative. We are all different with a variety of experiences , no two are really the same. My AVM was left temporal and quite small. On an MRI and MRI with contrast you can see where it is due to the bleed I had, but couldn’t see the actual AVM. It was clearly visible on the angio, and really from my knowledge the angio is “the” scan to figure out the fin details of AVM, and find them for that matter.

I would recommend having a list of questions for neuro, the folks I dealt with were down to earth and matter of fact which really helped. Wishing you the best, welcome and take Care! John.

Hi John,

Thank you for your message. Is an angio the same as a DSA? How was it? I’m sure there’s something there and the thought of waiting to find out where it is by waiting for it to rupture, isn’t a nice thought. Is there any info that says aneurysms are a sign of an AVM somewhere in the brain?

P

I think they are essentially the same as both use a catheter, dye and imaging. From google search:

Cerebral angiography is also called intra-arterial digital subtraction angiography (IADSA). This phrase refers to acquiring the images electronically, rather than with x-ray film. The images are electronically manipulated so that the overlying bone of the skull, normally obscuring the vessels, is removed from the image resulting in the remaining vessels being clearly seen

I have had three cerebral angios, the first I have no recollection of as I was in the hospital after my bleed. I had another in August 2016 and then one in February of 2019. The two I recall were no problem for me and went extremely smoothly. The worst part is needing to remain on your back for a couple hours afterwards, 2 if they use an angio plug and 4 if not. The nurses and Dr. were awesome and very clearly loved their jobs which always put me at ease, I knew I was in good hands. John.

Hi @PongosMum

I’ve had a little Google of a few things and from what I’ve read, whether the infundibulum needs doing anything with depends on where it is in relation to your aneurysms. I haven’t seen anyone else describing infundibula in the past 2-3 years, so you very much have to ask your doctor about what it all means. On the face of it, you’ve got three or four different things going on and how our if they affect each other is definitely a question for the experts.

In regard to a digital subtraction angiogram, it sounds like what we normally refer to here as an angiogram and sounds like it is the injection of a contrast material and then viewed using x-rays rather than an MRI or MRA with contrast which uses the magnetic resonance machine to capture the images. Whether one is better than the other for where your “features” are is again a conversation with the doctor. Sometimes the multi-layered view of the MRI may be necessary; sometimes it may be quicker, cheaper, clearer to just X ray through onto one plane to see what is what, or to have more choice as to the angles viewed.

Is it safe to do the scans? It’s never 100% safe to do any of this stuff but if there are some special risks associated with what you’ve got going on, you should get that info from your doc. Does the doc need to do one of these scans in order to see in enough detail what is there and what might be done about it? Yes, I’d think so. If the doc thinks there’s a significant risk through doing the scans, he or she should make that clear.

Hope this helps a bit.

To note also, an AVM is not the same as an aneurysm. The two are not normally linked but there do seem to be people who have both going on. In the same way, I think the calcification shows slow moving blood rather than necessarily an AVM, so it seems you have a few things going on and your doctor is really best placed to tell you what any of it means. Obviously, they shouldn’t expect you to know anything without their expertise or help, so they should take the time to explain what it means.

Let us know how you get on. We are all with you!

Very best wishes,

Richard

Actually, I think what John has found re IADSA is the best reference. I agree it sounds like a DSA is to do with processing the image further than a normal angiogram.