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AVM Survivors Network

DAVF symptoms

hi I’m not new here but, I just want update my post, My DAVF was diagnosed in 2010 pulsatile tinnitus, head pain, dizzy spells. Its a type 11a Cognard, also found a small pcom aneurysm after Angiogram it was confirmed at Belfast I was offered Embolization and even went in for preop assessment, but as my life was very unsettled at that time 4 yrs ago I backed out, as I was coming back to live in England to be near to my family, However the neuro-radiologist at Belfast was very kind and referred me to Walton Centre, Liverpool, I have been going roughly 12 month appoinments with MRI scan, but the Consultant doesn’t seem to want to intervene, not entirely sure why, but I have a lot of unpleasant symptoms, Maybe he thinks too risky I am 77 now but my general health isn’t too bad, so at the moment I’m just trying to handle the symptoms best I can.
I wanted to ask does anyone with a DAVF have any the following symptoms;
Obviously, lots of head pain, some intense other just aching, facial pain, constant sinus congestion, which doesnt respond to treatment.pain behind left eye and of course constant pulsatile tinnitus. I try to live with this but sometimes it is a bit scary not knowing if it will bleed anytime Can anyone relate to this

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The pulsatile tinnitus was the killer for me. The sound morphed from beating to squeaking, honking, and all manner of noises. I suffered with this from 2010 to 2016 when the AVM bled and I had a coil embolization to stop it. It stopped all the symptoms cold. I wasn’t offered a lot of treatment options as my condition had deteriorated so badly. Only last week I was re admitted to hospital to see my neurosurgeon as I started having severe dizzy spells and it was thought the coils may have slipped. An angio confirmed all was clear so now I have to find the source of the dizziness. Always something.

@tinysilky Hello - So sorry you are not able to get an embolism. There is always risk during of tearing our artery while they are in and as we age I believe the risk goes up - The pulsatile tinnitus is terrible - I was so bad I just could not sleep at all maybe 1 to 2 hours at night and I was on meds that should of knocked me out. After my first embolism the sound stopped and I was only hearing it occassionly this was Jan 2012 and in May of 2015 they went back in as they left some veins open but somehow they had sealed themselves.
I still have daily head pain, I dont get dizzy anymore and I still have sleep issues but not as nearly as bad I cant drink coffee past noon anymore as then I can hear it - If you notice any symptoms getting worse please go back and get it checked.
Hugs
Angela

Hi

Whereabouts in your dura mater is your AVM? Mine is right occipital, flowing into transverse sinus. I had it embolised in April and it has got rid of a lot of dizziness and the pulsatile tinnitus but I’ve got quite different pressures in my head which feels quite weird, and I’ve got some ear fullness (I find popping my ears relieves a bit) some return of the dizziness going on and some tenderness on the base of my skull / top of neck.

So… even with intervention, it doesn’t all go away first time, necessarily.

I’d say ask him why he doesn’t want to intervene. It might be that he doesn’t think it would be the right balance of risk and benefit… there are always risks with surgery. Or age, or any other medical things going on. Probably, he thinks getting to 77 is brilliant and there is no reason to think that you’d not just carry on!

I think I was bothered when I first discovered mine, when I had to contemplate surgery and when it started to make me really dizzy. I know I’ve had an op now (but I think I might need another) but I can’t say I worry about it.

I got myself a medical bracelet, so if someone does find me acting strangely, lying on the floor in the wrong place, struggling to communicate or looking positively droopy-faced, they might find me and my bracelet and dial 999. I think that helped me relax about it a bit. I’ve obviously updated mine so it now says I’ve had an op but it is still on my wrist as a safety net.

Lots of love,

Richard