Fistula behind left eye

Hi all,

In the last few months I’ve(26f) been diagnosed with a Dural Cavernous Fistula and have been reading up on it (how I found this site). Is it the same or similar to an AVM?

Mine is behind my eye, causing it to bulge out and be red and swollen. In the last few weeks my eye has gotten worse, prompting my doctors to take the next step besides monitoring-- an angiogram.

Turns out I have a blockage in some of my veins (probable clot) before the fistula causing blood to pool up. Now in addition to glaucoma drops to keep eye pressure down, I’m on blood thinners and even closer monitoring to make sure things don’t progress in the wrong direction.

Anyone go through anything similar?

Miranda,

Welcome! I think my AVM is similar, though in a different place. Mine is a Dural Arteriovenous Fistula in / over my right occipital lobe. I also had a narrowing or thrombus in my right transverse sinus, which the doc thought was one of the contributory factors to the fistula growing in its impact, like you.

Mine began to change a bit and I had a number of “draining veins” which appeared on the outside of my skull.

The angiogram will allow the doctors to see exactly where it is, how big, what treatments they might do.

I’m not very familiar with “cavernous” malformations, so not clear how treatable it is or how it would be treated.

Welcome to the family! I know we have a few CCM members. I hope one sees your topic.

Very best wishes,

Richard

Thanks Richard!

What has all been done about yours?

They said from the angiogram, the blockage is actually in the way of the fistula, so if they needed to embolize it, they would have to go a different route from the normal femoral artery starting spot-- so complicating things further.

So for now I’m on blood thinners to hopefully clear out the blockage/pooling of blood and give the fistula a better chance of closing off on its own. They will do another angio in 6 weeks to reevaluate how the blockage is going and if we need to do other steps. All while making sure I don’t lose vision in my eye.

Miranda,

I had an embolization, through the ol’ femoral artery. Actually, I had a hole in both legs: the doc said he might go up both arterial and venous sides to get to it. He made two holes, so I suppose that’s what he did, though I was out for the count, so never asked!

The possible “embolus” in my right transverse sinus didn’t get in the way, so far as i know, and he said afterwards, it was a narrowing of the vein, not actually an embolus.

How are you feeling about it? Are you OK? Finding out about this kind of thing is pretty shocking but I hope that by being here and asking questions, you’ll feel more informed, more prepared.

Best wishes,

Richard

After talking with my doc on Friday, it looks like they are going to be trying the embolization through the femoral artery. Possibly trying both the arterial and venous sides to try and get to it. Evidently there are some questions as to whether he’ll even be able to get to it in order to embolize.

If he can’t, then he’ll stop the procedure and we’ll reschedule with both my doc and an eye surgeon and they will access the fistula through a vein in my eye… and will hopefully be able to close it in a way that scarring should be minimal.

I’m doing okay— It’s all just weird. Luckily I’m not in pain, and have had the luxury of time to decide on next steps and not rush through things. My vision has been stable and only recently started to blur.

It’s nice to know there is a community for something like this. From the sounds of it, these are pretty rare so it’s cool to have a group already formed and fairly easily found.

1 Like

Miranda,

It’s great to have you with us! Keep us informed: do you know when you’ll be going in?

Richard

Not yet-- sometime in the next couple of weeks though. I’ll know more at the end of this week

Just got the news-- Going in for the embolization on the 15th of this month. They are going to try to get it through the vein first, then the artery. If they can’t get it, he’ll stop and we’ll regroup. Then schedule to do the procedure through my superior ophthalmic vein instead.

It sounds like a sensible, sober plan. I like it when the docs are being steady rather than appearing gung-ho.

15th is not far away: I’ll be thinking of you!

Richard

I realized I never checked back in. They ended up not being able to access the fistula through my legs and had to schedule surgery through my ophthalmic vein. Surgery took 6-7 hours, 3 of it just to find the vein from all the swelling.

Overall I was very lucky, especially after reading stories here. Recovery went well with only two days of intense pain. My vision and oracular pressure are back to normal and all is well.

Thank you for the support

Hey,

I’m sorry I didn’t follow up, either. I’m just a bee that moves from flower to flower. I should really work out how to remember and go back to the same people / flower more often. But it is my absolute pleasure to meet people, encourage them or help them along the path. I also can’t believe it is more than 3 months ago! It feels like last week!

Gosh, it sounds like you had a tough time! It’s great to know you are doing well! I hope it carries on the right way! My dural fistula embolisation feels like it is wearing off somehow, so I went back to my GP last week. I’m back in the waiting game for a first appointment at hospital :frowning:

But life is not bad. I need to find somewhere to live that doesn’t have winter but otherwise, it’s all OK! :smiley:

Thanks for checking in! Very best wishes,

Richard