Orbital AVM - anyone else experience it and have residual pain?

I had a bleed after anesthesia for an unrelated condition a few years ago. When I woke up, my eye was swollen shut and entirely red. (subconjunctival hemorrhaging.) It turned out to be an AVM bleed, but I didn’t find out the cause for a few years.

Since then, my AVM has resolved. I have platinum coils and it took 3 embolization procedures. Aside from the bleed years previous, I noticed I still had a problem because the AVM made the veins in my head sort of prolapse, meaning a mass would push on the back of my eye and cause pain. Even worse is looking down, as it causes ptosis and pain. You can see the mass as it pushes out of my eyelid area.

This morning, I woke up with a terrifying amount of pain in my left temple. I can tell this is all related to the AVM site, however the AVM itself was resolved.

Has anyone else here experienced something even remotely similar? I cannot lie on my left side, or else I have a sort of blood pooling that causes a black eye. Most of the doctors I have seen shove me off as too complicated. I’m starting to feel crazy.

I seem to think @AlwaysCurious has some pain near his orbit, possibly @mike_az_21 and maybe @HealthIsWealth

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Hi, “crazy” < that term gets used loosely around here

What do I not get? :roll_eyes:

My temples take turns pounding, usually my left side pounds the most(that’s where my dAVF is) - slight pressure behind my right eye < it also comes & goes. Ever since my last trip to ER about two months ago, it’s let off quite a bit & is very mild now - so is the temporal throbbing

Just prior to my hemorrhage, I had a “migraine” - my right eye felt like it was going to pop out of its socket & my vision went blurry in that eye.

I just pray to God daily that my symptoms stay manageable as they have been.

Sorry to hear you’re having these probs - probs, yes - crazy? Well, it’s more like being driven crazy

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Thanks for the reply! I don’t like that anyone else feels the same way that I do, but it is still comforting to know I’m not the only one. Can you imagine the stares I get from people (including doctors) when I say things like, “I can’t look down”? lol

If I fall asleep and roll on my left side, I will absolutely have a headache at best when I wake up. The leading theory is the slow drainage left due to the AVM is being worsened by the weight on it. But on the bad days, it feels like a migraine with extra stabbing, if that makes sense, along with pressure all over my eye. My vision is still darn near 20/20, though.

My bleed was absolutely a surprise. When I woke up, the hospital was terrified because I looked like a lawsuit to them. They tried to rush me out of there and nobody would look me in the face. No wonder it took me years to find a diagnosis!

My DAVF was at the very back of my head but I can relate to sleeping angles. Until it was treated, I couldn’t lay flat (with 1 pillow) as I would go dizzy. As it progressed, I had to lie propped up at 30° or 40° angle with a whole bunch of pillows.

And, there’s me - what made me so blessed so far - I don’t know, I just constantly try to figure it out

The only time I notice an added pressure from the way I lay now, is if I do decline bench press & a little on the flat bench also - I get a throb in either the area where the hemorrhage happened, the area where the where the embolization was done, or my left temple

But, this is so minor so far

When, I came home from ICU I had to sleep sitting up. Then lowered the pillows over a few months time. At first it would also make the brut in my left year louder.

Same here (still on the pile of pillows though not “upright”). Took a few weeks for me rather than months.

Hi Sigourney

Sorry to hear you have that pain as I know eye pain sucks!

I had a DAVF in my occipital lobe and have had intracranial pressure where my eyes feel like they are going to literally pop out of my skull for years until they found the cause and I had my fistula embolised

I don’t have issues looking down as such but the pressure is there and I take paracetam and eye drops

Since surgery, the pressure is sometimes there but mostly not to the same degree which is good. I used to have eye drops and pain killers 24/7 but since surgery it seems to come and go for weeks on end

It does seem the longer since surgery, the less frequent and less painful they are

Since my headaches and eye aches went away for months after my surgery then returned, I was convinced it had recanilised but after having follow up angiogram, it was all still obliterated so that rules that out and something I just have to put up with

As we are all so different though, I think it’s best that if anything changes substantially from “your normal”, see a Dr asap

How bad is it? Would they/you be willing to do another angio or at least an MRI with constast to double check it’s not serious?

Hope that helps a bit

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