Christie,
Thanks for the tag.
Hi Chris,
An “abnormal connection between an artery and a vein”, so far as I know is an AVM. By definition “arteriovenous” means between artery and vein and “malformation” means bad formation.
However, there are two main categories of brain AVM (again, so far as I know. I’m not a doctor, just been hanging around here too long). One is a dural arteriovenous fistula DAVF; the other is a regular AVM. My doctors have called mine both AVM and DAVF but I believe mine is really a DAVF.
And within the category of DAVFs it seems there are those that are progressive, if not aggressive, which need to be treated and those that are not really doing much and can be left. I’ll find a link to the Cognard classification that I found a few weeks ago to illustrate that difference. Note that Cognard is exclusively for DAVFs.
So… what have you got? At the moment, given what you’ve said it sounds like it could be a DAVF or it could be any other kind of AVM. The pulsatile tinnitus is pretty commonly associated with a DAVF but I wouldn’t be surprised if it were also possible to get from your dilated artery. @TJ127 introduced me to an abnormality between the sigmoid sinus and the carotid artery the other week which seems to give rise to pulsatile tinnitus, too, so it is basically indicating that you’ve got some unusual blood flow going through a vein or an artery somewhere that you can hear it.
So, it could definitely be a DAVF or it could be an AVM or that dilation or something else. Since you’ve already had an angiogram, it sounds like he is pointing to a DAVF and possibly the less aggressive kind.
I can tell you that getting diagnosed can take ages and my experience of then moving to treatment is that that can take a long time, too. So it is good that you’ve got as far as you have. In the UK NHS you can imagine that neurosurgery and interventional radiology gets prioritised to those most in need. Since your doctor is comfortable that yours is at least not urgent, you’ll be waiting until October to progress. So long as you stay nicely without symptoms (other than the PT) that should be OK. If you start to get new symptoms or anything sudden or significant, go straight back to the doctor. If you need moving up the queue, they’ll move you. If you have anything significant going on, go to A&E. Don’t dither, just do it.
Ok?
I had a DAVF which was an artery discharging into my transverse sinus, but with a diminution of my right TVS so it was whooshing both ways – both ears – through both TVSs. I think mine was of a more aggressive kind and I had “reflux” – reverse flow along veins that would normally be upstream to my TVS but because of that diminution (= narrowing) more blood was flowing in than could flow back to the heart and I could feel veins inflating on the back of my head, strong enough to lift your fingers up, and some dizziness as well as PT.
I first heard mine in Oct 15. First got worried about increasing noise in Apr 16 and saw my GP. Saw an ENT man in September 16 who recognised it immediately as at least "AVM. Saw a neurointerventional radiologist in Nov 16 and finally had an embolization in April 17.
Hope this helps.
It’s great to have you join us. It is often a very worrying time but getting to know more about it can help. Being able to ask the right questions can also help. Feel free to ask anything.
Very best wishes
Richard