Hi, I’m Nicole, brand new here. First of all, happy new year, and may 2025 bring health and happiness to all you.
I’ve read a lot of your stories, some actually made me cry, you are all so brave. I have definitely not endured as much as some of you, but still feel like it’s been a strange and often stressful experience, and welcome any support.
I was diagnosed with a DAVF in June 2024. About a month before that, I had some odd scratching noises in my ear, first one, then the other, heartbeat sounds/wooshing in my ear started. I headed to my GP, so she could check my ears.
She initially sent me to a audiologist, hearing test was all good. Skipped the ENT appointment, for an MRI she referred herself. Next thing I knew, she sent me to the hospital emergency to make sure I got seen by a neurosurgeon ASAP, as a DAVF was found on the MRI, together with a possible blood clot (which to this day it seems a little unclear if it was even a blood clot or some other thing from the DAVF).
After some communication breakdown stuff-ups at the hospital, I had an angiogram, which I was totally unprepared for due to the said stuff-ups, but the imaging department were amazing. After a quick look they classified my DAVF as a Cognard Type 2a, low risk, left transverse sinus DAVF.
A week or so later, I met my interventional neuroradiologist, who explained all the images, and after that first appointment I felt like I was in good hands.
He got me to try carotid compression therapy, as there was a 30% chance it can help the DAVF resolve itself. But over those few weeks my symptoms got worse and worse. My PT got louder, with various different wooshing, whistling, and siren sounds joining the orchestra, and my right ear joined in the fun my left ear was experiencing. I also had a weird high pitched cicada like PT on top of it. I had prickling sensations, headaches etc, and other strange facial symptoms.
Mid-September, another IR review, and after discussing how my symptoms were affecting my quality of life, he recommended embolisation as he considered the benefits now outweighed the risks. I was basically at the stage where exercise and even bending over were causing weird pressure changes and headaches. So many symptoms from a type 2a fistula.
After an initial cancellation of my procedure, due to an emergency coming in as I was getting gowned up, I was re-scheduled for 2 weeks after that, 1st October. It took 7 hours, as it turned out to be a bit more complex to fix. I had a fair few feeders; they blocked off my left sigmoid sinus vein, where most of the 30-something coils were placed. Apparently they had to take that approach, as I had a number of feeders going through my facial nerves. They didn’t want to risk the nerve damage by touching those branches directly. They also coiled some arterial feeders in a few other spots, and used PHIL in another.
I had a bit of a terrible time in ICU and neurosurgery ward, due to some uncaring nurses. I won’t go into the dramas at the hospital, but all I can say is that it left a bit of an emotional mark. The 7 hour procedure affected me a fair bit, I couldn’t move at all for most of the night afterwards, and one of my puncture sites (arterial) kept bleeding. I couldn’t walk or stand on my own without losing my balance. After a 2 night stay, the physios that had the final say, saw the lack of care I was getting, said I would be better off at home.
Bit by bit my balance came back - took 2 weeks for me to feel like I could walk straight.
The severe headaches and sharp pains in my head continued and the odd PT, and after 2 weeks, my INR ordered an MRI, just to be sure there were no complications. He was pretty happy with the result, which showed “significantly reduced flow”. He was confident they got all of it in one go.
Fast forward to my 6 week review, and I still had very bad headaches, and the ongoing high-pitched PT, which was now sounding like a metallic hissing/metallic vibration, still pulsing in time to my heartbeat. It gets worse when I lie down, especially the longer I spend lying down. I can change the way it sounds or diminish it by putting pressure on different parts of my head, or turning my head specific ways. Out of all the severe headaches, sharp stabbing head pain, none of those cause me as much distress as this new(?)/changed(?) PT.
Original plan was to do a 3 month MRI, then a 1 year angiogram as the final test. The 3 month follow up MRI got changed to an angiogram instead as he needs to be sure there’s no residual flow left over, as the MRI doesn’t always give enough info.
So currently I’m in a holding pattern, while I wait for my upcoming angiogram. I am apprehensive, because in some ways, I hope they find something, as I desperately need an explanation for this PT, instead of having no idea.
My specialist has been an absolute sweetheart and a lifeline through my rough experience with ICU/neuro wards, various appointment cancellations/etc, and got me through it. I have never met a doc quite like him, and thankful for the care and compassion he’s shown so far. Every time I mentioned that maybe I was just being a baby, he would remind me that that this is a rare and real pathology, and I was anything but. And that a 7 hour op is a pretty long ordeal.
Everything happened so fast, from diagnosis through to embolisation in less than 6 months, I don’t think I’ve processed it all. Despite the classification being only a 2a, this whole experience definitely took over my life. I know it will take a while to get back to feeling “normal”, do “normal” things. I’ve read many of your stories to now know not to push too much, but it took time to learn that.
