Hi there - I’m new to this group and I guess just looking for some support. I have a connective tissue disorder, I’m 35 and was recently diagnosed with an aneurysm and dural AVM. I have a husband and 2 kids and I’m just worried about what all of this means for my life and my future. If anyone has any insight or just helpful thoughts I’d love to hear them. Thanks so much
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Hi.
First things first, I had a dural AV fistula that I discovered about 9-10 years ago. I got it embolized in April 2017 and I worried my way all the way to the operation (and for a year or two afterwards!) but I’m absolutely ok these days. I don’t have any symptoms and I don’t have any limitations, it is behind me. It might raise its head again one day but I’m resolved to do normal life until something tells me I need to do anything different. So don’t despair. It’s a very unwelcome turn in the road but hopefully you’ll find a way through it and relegate it to the past.
Which connective tissue disorder do you have because Ben’s Friends also operate a support forum for Ehlers Danlos Syndromes?
Lots of love,
Richard
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Thank you for your kind words. I’m almost positive I do, I am incredibly flexible and have a lot of the signs that point to it. When my rheumatologist tested me he called it “undifferentiated connective tissue disorder” and kind of left it at that. The neurovascular surgeon I’m seeing with this new diagnosis is now referring me to a cardiovascular geneticist to do a whole panel to check on this. I would be surprised if I didn’t, but will wait to join the group until I know what it is.
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There are at least a handful of people with EDS here: there may be a bit of a correlation but there’s certainly no direct one-always-follows-the-other thing for most people.
Tell us what you’re bothered about and hopefully we can share our thoughts about what we did, what we found helpful at the same kind of stage you’re at.
As far as I’m concerned, talking is good. I’m difficult to shut up! 
Best wishes,
Richard
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Hi KC
I also had a dural AVF (fistula), and I had it embolized, using the “super glue” approach, back in 2010. I went on to lead a normal life after that, including earning two black belts in Kempo Karate. So, take it one day at a time. I’m not a doctor, but the dura is generally more accessible, so you may have more treatment options than someone with an AVM/AVF in a more remote region of the brain, or deeper inside the brain, where for example, the gamma knife may be the only option. Good luck and keep us posted. Reach out if you have any specific questions or just want to talk about this some more.
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Thank you both so much. I think until I have my cerebral angiogram on 11/21 I won’t have many questions as I don’t know the exact location or extent and what the plan is going to be, with the added aneurysm as well. I think just looking for some hope and knowing that others have gone through this. I think the uncertainty is most daunting. I’m a young mom with 2 kids and a husband and happy with my life and just hoping I can move on from this. Thank you so much.
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So the other thing we should set you up with when reading round the site is that DAVFs are classified differently from brain AVMs, perhaps exactly because of what @John_H says: that the risks are more around the impact of the AVF rather than the complexity of intervention.
The scale used tends to be the Borden or Cognard scales:
My doc never told me his classification of my DAVF but the impression I got was that even though it appeared on my MRI as a simple white dot – it was pretty much a straight shunt of blood from artery into my right transverse sinus – it was the amount of blood being diverted that he was interested in rather than the size per se. I think mine was classified as type IIa/b.
So don’t go round reading others’ stories about Spetzler-Martin grades because I don’t think that’s relevant to you if yours is in the dura mater.
And so far, catheter embolization seems to be the most common approach to resolve a DAVF, so if that’s what comes out of the recommendations, we can talk to you about what that is as well. I’d describe an embolization as very gettable-throughable!
Very best wishes,
Richard