Hi, I’m new to this forum. I am 8 months post embolization for right transverse-sigmoid davf. The surgical report said it was occluded, but right after, I started hearing pulsatile tinnitus on the opposite side. This felt like a normal heartbeat, no ‘whooshing’ sounds. The sound has now morphed into whooshing and a tone (especially when I wake up). My follow-up MRI/MRA was stable, but when I reported the symptoms to my Neuro, he recommended another MRI of the left side and the possibility of another angiogram. He said there may be a residual feeder that was not detected initially, or there may be a newly formed feeder. I’m having other symptoms, like dizziness, balance issues, brain fog and memory issues, pressure headaches, fatigue, and blurry vision. These symptoms are variable, but seem to be related to position changes and my level of activity. I also have left transverse sinus stenosis and an underdeveloped left-side venous system. I know these are fairly common, but I just wonder if re-routing the right side could cause more stress on the opposite side. Has anyone experienced a possible recurrence or been evaluated for a recurrence? Or do all of these symptoms constitute a normal recovery? Thank you for reading and I’m grateful to have joined this group!
Hi, well - there’s not exactly a normal for any of this
At 8 months, I still had serious issues. No pulsatile tinnitus, but instead a hum on the left side where they did the work. It was fairly loud & resembled a power transformer sound. It made it hard to fall & stay asleep. It lasted well over a year, then gradually got quieter.
I personally thought my symptoms were more severe since I did hemorrhage, and they were in a rush to repair it - since my bleed was active.
I had my right transverse- sigmoid DAVF embolization in 2018 and still have pulsatile tinnitus but the DAVF is occluded per MRA/MRV/MRIs performed every 2 years. However, my Johns Hopkins Interventional Radiologist informed me that he saw the development of left sided anomaly which appears benign at the present time to be evaluated in 2 year with MR imaging.
Who knows what’s to be expected with these things?! It sounds good that you’re getting a new scan.
I had a very healthy sounding new pulse post embolization in almost exactly the same place but that was immediately post op rather than any time afterwards. I also got what I described initially as ‘visual effects’ but which were blurring.
So, my question about the blurring: does it occur in both eyes simultaneously and does it last for maybe 20 minutes? It might be a scintillating scotoma: that’s what mine was. Mine went away after a few weeks post op but scotomas are part of migraine aura, so anything irritating the right bit of brain could lead on to these effects. It might indicate something to investigate but equally it might not resolve: nobody would operate to resolve them, I’d say, but if you’ve still got a little something going on, resolving that might resolve the auras.
I had a blast of dizziness at about 6 months post op – in Nov 2017 after the op in April 2017 – and I spent at least 1½ years being perturbed by weirdnesses. I had some repeat scans at 1 year post op and the conclusion was basically “nothing visible”: just allow yourself to get on with normal life.
Are your current symptoms worse than immediately post op? Recovery is definitely not a straight line but if they’re noticeably worse over a long time than post op, it does sound like you might need a checkup and a bit more glue.
How do you feel about the embolization? I was very perturbed by the idea pre-op but I’m ridiculously chill about the idea of doing it a second time if I need to. My doc indicated that he might take two approaches to it in the first case. Doing more than one is not unusual per se.
Welcome! It’s great that you found us and I hope we can help you a little along the way.
Very best wishes,
Richard