Hi does anyone suffer from facial pain who has a DAVM no treatment yet also have a small aneurysm in same area
Sorry whats a DAVM … i have a AVM behind left ear area.
Matty
Dural 
dural arteriovenous fistula centred on left transverse and sigmoid sinuses abnormal connection arteries and veins, diagnosed 2011 Consultant didn’t want to intervene and the decision was ‘watchful waiting’ bruit behind left ear, all kinds head pain facial pain dizziness suffer a lot with it but he seems to want to just keep an eye on it , so to speak
wow…ok how often do you see him …ever year and do you always have a angiogram
Matty
Hi, Well only been with him for 3 years,each time he just talks to me ask me questions and I have an MRI scan, its over a year since I saw him last, and then there didn’t seem to be any change. I am due to see him quite soon, When I was first diagnosed in Belfast The Consultant there was arranging for me to have embolization but as I said previously I had some personal problems so I put it off. And yet this Consultant at Liverpool seems to hold back, I suppose its just different attitudes about condition. I should ask when I go soon. Hope you managing ok with your condition.
Thanks for the info…
Yeh i am hot and cold… panic for a few days then forget about it for a few, but i do wind myself up about it…
Matty
Yes I have a lot of facial pain and head pain, ear pain, ear fullness, dizziness (I could go on). I have an untreated DAVF too.
The problem is, I find that with such a mixture of symptoms, which are coming from my DAVF and could there be other reasons, some are so bizarre I sometimes wonder, I mentioned things to the Consultant he just listens and writes them down.I saw him again in May this year and he said they were not going to intervene as it was too risky, if I could live with my symptoms it was best.So I suppose that is what I have to do. I get so fed up, never a day without strange symptoms and head pains, still I suppose there are people much worse off
Yes, I understand exactly how you feel. So many symptoms, such a mix, and so debilitating. Scary too. Feel free to message me anytime (or privately if you prefer) if you want someone to talk to. My whole life is basically dealing with the symptoms. Awful
Thanks for your quick reply, and yes I will message you when I need to talk, its good to know there are others that can understand how you are feeling and share some of your symptoms, My consultant told me his mother-in-law lived until she was 97 with a DAVF, untreated, maybe we will be in luck, if she felt as bad as we do sometimes she must have gone straight to heaven 
p.s Were you diagnosed at the Walton centre in Liverpool?
97? I wonder how old she was when she developed the Davf though, possibly 96?!!!
No, it was consultants outside The Walton Centre who told me there was a Davf on the MRA.
hi, the reason I asked was because I noticed you were from Liverpool.I was first diagnosed in Belfast in 2011. I was experiencing pulsation tinnitus in my left ear and all kinds of horrible headaches plus dizziness i had a cerebral mammogram and found it plus a small aneurysm…the consultant Mr Rennie wanted to treat it embolization it’s called but I was coming back to live in England and i got scared when he told .me risk of stroke during procedure so he referred me to Walton centre but the consultant there seemed reluctant to do the procedure,I suppose all doctors have their opinions on this, he wanted to watch and wait, so here I am in limbo land:joy:
Not mammogram angiogram predictive text
Is there a particular reason why they want to watch and wait? Is your particular DAVF difficult to treat or did they say that they find DAVF treatment in general to be risky?
It is awful that you are suffering too but it does help knowing we understand each other’s suffering.
hi, the consultant at Belfast who did the cerebral angiogram in 2011 was going to intervene I even went in for pre assessment but I changed my mind I had to. Come back to England, so he referred me to a colleague. At Walton Centre he wanted to apply the treatment of watch and wait, not entirely sure why,like I said I think all doctors have their own opinion on treatment,my last MRI was last January I saw him in May ,he said there were no changes and I asked why he didn’t want to intervene, he said. At the MDT meeting it was decided to leave it. he said sometimes results can be. Catastrophic .that shocked me .my DAVF is 2A and the aneurysm 4mm what he did say,if the pulsatile tinnitus suddenly stopped to contact them right away hope this answers your question
@tinysilky by “2A” do you mean Cognard Classification IIa? If so, “watch and see” seems valid – see the referenced classification. Re-reading the article, it seems that it is the presence of cortical drainage that is the real “must do” indicator and IIa / 2A is without cortical drainage.