Hi everyone, I am newly registered but have found this site really helpful over the last few months. Here is my story. I developed Pulsatile Tinnitus in my left ear end Feb 24. This noise, 24/7, combined with increased headaches led to me seeking medical advice early April 24. Had an ENT consult, then Vascular, then Neuro. DAVF diagnosed July 24. Cerebral Angiogram early Aug 24 confirmed it was predominantly left/rear of head, with multiple fistulae, and it was aggressive, draining to cortical veins. Embolisation scheduled for mid-September. Between August and September I experienced many headaches, head pains, weird sounds and sensations in my head. Most of which I ascribed to the stress of being diagnosed with such a condition, and the high risk of a bleed. The Pulsatile Tinnitus also changed - firstly becoming intermittent, then reducing in volume, until by the time of the procedure it had gone. I told the consultant about this, and he said that the PT changing was not necessarily a good thing, and confirmed we needed to do the embolisation soonest. The scans had also shown a benign brain tumour (completely unrelated but still more to deal with). The day of the embolisation arrived, I went to theatre, was knocked out, catheterised and when my INR got to the affected part of my brain, all my fistulae had gone! Auto-obliterated is the term the consultant used. He completed an extensive angiogram from every artery, to confirm it really had gone. I understand this is an extremely rare outcome. Certainly, I was not even aware this was possible, and no-one can offer me an explanation (it’s only speculation as to how/why this might have happened). But I am very grateful that my body somehow healed itself… I will be scanned again in December, just to check that all the vessels and blood flows remain normal.
Well, I was going to say “welcome to the club” and commiserate with you over a very similar journey with my own (singular) DAVF but then you swung a curve ball in there like wow!
I remember one other person on here describing a spontaneous resolution but it’s pretty incredible! Well done! (Some people definitely have the power of prayer tapped!)
How goes it with the tumour? We don’t have anyone here that I know with a tumour but I may have another support forum for you, depending on how you get on.
Best wishes,
Richard
Thank you Richard!
The tumour will be re-scanned in December also. If it has grown since July, it is coming out, most likely via craniotomy. I am fortunate with the tumour also, that it is benign and slow growing, it has not yet invaded anything important or caused symptoms and is in a good location for surgical removal.
When I felt pretty fed up about being diagnosed with these two potentially life-threatening conditions, a friend said how blessed I was. Blessed to have found out about them before they did me any major damage, when they are both fixable. And that is how I try to see it all now. I certainly feel very lucky with my DAVF healing.
I agree. It’s a frightening thing to discover these things but many people come through very well (I have no deficits, for example) and it reminded me that I’d had about 50 years of trouble-free motoring before something went awry under the bonnet.
I can wholly relate to the pulsatile tinnitus and its once-second, twenty-four hours a day presence. Very, very worrying.
Long may it continue to be disappeared and the very best wishes for December!
Richard
I had a DAVF in a similar location, which I found out about after a small bleed. Had it coiled. For previous years I had been visiting an ENT about a wooshing sound I was hearing, thinking I had impacted wax or something. They never picked up on it. The wooshing sound is a huge indicator as its the sound of the blood flowing thru a fistula. Best wishes!