I had my DAVF diagnose 2011, no treatment just watching, have mRI scans yearlyI have bad headaches daily, plus other unusual symptoms. Of course I have the pulsating in my left ear sometimes loud other times soft, there have been times when it has stopped altogether and I thought the same as you, ‘does it mean its ok now’ just when I thought it had gone it started up again. I did read on a site on here that the pulsatile tinnitus stopping wasn’t necessarily a good thing, it could mean changes.like you I get really worried sometimes, I also have a small aneurysm in the same area.
May I ask where your fistula is located… I assume then its a grade 1 type?
The pulsating in your ear, is it a proper whooshing or just a throb type pulse?
Sorry for the questions! Its hard just waiting around all the time.
So you say sometimes its louder then softer, I had that! When it stopped, may I ask roughly how long for?? Was it weeks, months?? Or days even?
When they MRI scan you, do you know what they are looking for? My Neurologist says MRI doesn’t show enough, it will only show if its there or not? But no detail. Perhaps they think yours might regress?? Hope so.
May I ask if you have been told to avoid anything? Alcohol, sports, flying etc…
Again, sorry for the questions, its rare to find someone that has been put on a watch and wait
Thanks again for all your help, sincerely appreciated
Yes, the MRI shows the presence of an AVM but an angiogram is needed to be able to see which vessels are flowing into which. On the MRI I had, the scan was set to show high flow blood as white. Obviously, the scanning mechanism is slice by slice through your head, so to “see” the malformation, it would be quite a job to flick up and down through the layers to make out the exact formation of the AVM. Plus, I guess where the blood slows down a bit, it would stop showing on the MRI. So I’m pretty sure a contrast scan of one kind or another may well be important.
I was advised to cut out stimulants, to reduce my blood pressure and reduce the risk of a rupture. So… no smoking, no coffee / caffeine, no chocolate. No straining, lifting heavy objects, etc. and as I saw someone say “go easy in the bedroom and the bathroom!” Cutting out coffee and chocolate helped me quite a bit for about a month but I think my AVM was developing month by month, so I became less well again after a month or two.
Some people have had to fly to get to their appointments, so flying may be OK but worth checking with your doc if you need to fly somewhere that it is OK for you. Holiday or travel insurance may well not cover you for any treatment needed abroad whilst you are undergoing things at hospital or typically for 6 months post discharge. We holidayed in the UK this year!
Thank you Richard… Thats really helpful
When you say you think your avm developed month by months, and you felt unwell, may I ask what symptoms increased in that time?
What was it that made you feel unwell, what symptom that made you suppose that it was development of the fistula??
Here is “part 2” of my story, circa March to May. There’s also a link back to the beginning.
The other thing I would say is that everyone’s AVM affects them in ways driven specifically by what connections their AVM has made. There may be some common or generic things about a right occipital DAVF like having pulsatile tinnitus and dizziness but how a DAVF progresses, if it does, may be very specific to each person. I’ve only my own experience to go by, so don’t put too great a store by one person’s experience.
I’ve not read of anyone else who ended up with inflated draining veins extracranially, for example. Surely to do with my own locality of AVM connections and perhaps the narrowing of my transverse sinus.
I must say, I understand what you have said about not putting too much on each persons symptoms… However, your symptoms are ringing true with me in a big way…
I also sleep on three pillows (its doing my neck in), because of the ear pressure… I also have like a pulsating pressure that feels mostly left sided… Sometimes I think I can feel the PT coming back with the ear fullness… Almost like an internal throb.
Also, I feel like I feel dizzy when I turn my head to left.
These symptoms have been coming on slow over the last 2 months, before that I would say I was mostly symptom free for 12 months …
Thanks Richard, again, as always sincerely appreciated…
I just want this bloody thing gone, to be honest…
I go fro deep fear of leaving my boy motherless (he has no father)… To just trying to forget about it… Ugh…