AVM Survivors Network

Hi I’m new w/ reoccurrent avm behind my eye

So sorry if this is long. And I tend to ramble… So back in 2014 I went in to have a cyst removed off my left temple. The dr got in went huh… lots of veins here closed it up and said he didn’t find anything… few months later I get double vision followed by pain behind my left eye and a rash. Weird combo I know. So I go to the dr, she sends me to eye eye doc, who sends me to a special one who sends me in for an mri. And eventually I end up at the university of Utah. 4 angios and an embolization I wake up in ICU with no symptoms left and they had closed 99.9%. Yay!!!

Fast forward to oct 2018 (also moved to az)i started noticing tiny bouts of double vision, which meh, not to worried. Then some headaches easly manageable, but I knew something wasn’t right at that point. So as soon as my insurance kicked in I was at the dr January 2. She goes, um yeah idk what that even is but sounds scary go get an mri and see a numerologist. It took them till April to get me in. For them to say can’t help you till June see yah. I found a new one that got me in quick and he goes yeah can’t help yah sorry. You need to go to banner umc (which i was told is extremely difficult) or Mayo in phoenix. By this point my head aches on bad days were so bad that I couldn’t function and I was almost constantly broken out in hives in which would only amplify if I took any form of an nsaid. I went to the ER at Banner and with in a week I was having an angio (July 10).

They found the one that was behind my left eye was back and there is also one on the back of my head, and the only reasonable treatment now is to shut down my left carotid artery…

Has anyone done that as a solution? I’m really nervous about only having one carotid… i have done the balloon test and responded well…

Welcome to the site! It great you joined us, although with everyone too bad as well! Sounds like you’ve had some news none of us want but do know how to navigate the “system” which is certainly beneficial. I have never heard of shutting down a carotid, but I really don’t have a ton of experience in that area. These things are so diverse fr each of us, if nothing we’re unique! I imagine some others will chip in, not sure experience wise but we are d a diverse crew, Once again welcome and take care, John.

Hi @Mellolello!

Ok, so shutting down your left carotid artery does sound like a big step and if you have the opportunity, it may be worth getting a second opinion only because it sounds big. I don’t think it is uncommon for arteries to be “sacrificed” to achieve an outcome but I’m no expert and the carotid arteries are major arteries.

When I had my embolization of my dural AV fistula, one of the things I was told was that it may be necessary to “sacrifice” my right transverse sinus if the closure was not possible otherwise. Insofar as we have left- and right versions of most vessels, and some interconnection, it may not be a big deal (and I was OK with going with one TVS) but it’s worth asking about how impactful closing the left carotid could/would be.

All surgery is a compromise: we are taking risks associated with the surgery in order to achieve an outcome that gives us a better outcome / lower long term risk than just leaving it as is. So no surgery is without risk. But it’s worth asking.

If you’ve not had the “what would that mean?” conversation with your current neuro, do so. If you’ve had the conversation but still not sure, it’s worth having a conversation with a second neuro if you can.

Hope this helps. You’re definitely not alone, though.

Very best wishes,