Can anyone tell me what kind of headaches they experience with their
DAVM mine is a left transverse sinus dural arteriovenous fistula, classified as a Cognard 11a fistula. also have left posterior communicating artery aneurysm
measuring app 3-4 mm
For the past 6 years no treatment given it was decided to treat it conservatively
just observing. I also have constant pulsatile tinnitus in left ear.
I get a lot of head pain, all different types of pain sometimes real severe. trouble
is don’t know whether my DAVM and aneurysm are causing pain or something else
I just wondered if there was certain types of pain associated with my condition anyone out there offer any advice by the way see my consultant every 12months.
due next week
Anne,
Mine sounds similar. Cognard types I’ve found reference to:
Mine was right occipital DAVF, with a thrombus in right transverse sinus and with some reflux, so somewhere between type I and type II… I had some reflux but was not told it was “insufficient” though it may have been. Apart from the pulsatile tinnitus, I had (and still have) a “dizziness” that is like the feeling when you’re on a swing and the swing changes direction… but your head doesn’t like that change of direction. A feeling of something “wrong” very much top of head, probably superior sagittal sinus-related.
Only got headaches if I let my blood pressure go up, so lucky there. Head would feel like a “thick head”. I’ve managed my BP down for so long, I can’t remember what the headaches were like.
If you’ve got a type IIA, you’ve got retrograde flow into your sinuses, e.g. probably sup. sagittal but the degree of reflux or retrograde flow is inhibiting normal flows in those veins which would drain past your fistula, so the headache related to the DAVF would be in those areas, perhaps, driven by oxygen starvation or over-pressurisation of the vessels.
I do remember I used to get headaches across the back of my head, across my occipital lobes. I took them for “normal” headaches, nothing unusual to tell you about them. The most unusual thing is my “dizziness”, as I say.
The other thing I’d say is that my pulsatile tinnitus changed late in my waiting from a single “whoosh” like the washing machine pumping out, once a second, to a more normal double thump of a heartbeat. No idea why. Not sure if that was an aggravation of the condition or the thrombus reducing.
If it is type II, it sounds like you’d want to get it sorted to me, you don’t want insufficient antegrade (forward) flow going on anywhere. I think that is starting to do you a bit of damage. You definitely don’t want to get to IIb (NB uneducated personal view here: I’m not medical, just expressing my opinion based on reading the English in the type descriptions and trying to understand the consequences). Talk to the consultant.
Hope this helps.
Richard
Original reference to the image above: Google books ?cognard+IIa page 829.
Mine is exactly where your is and I have had two angiograms and one embolism the second angiogram showed my DAVF closed by itself but I still have issues
I mine was treated with glue and onyx and they left a few vessels open because it would cause paralysis-
I am wondering why they dont do treatment
I went to Stanford and saw Dr Michael Marks who is the founder and head of neuro radiology.
my head hurts all the time and have trouble sleeping thankfully I dont have the sounds constantly anymore just a few times.
I get botox shots in my head every 3 months and I am on medical marijuana even my mm doctor is a neuro