I am 30 days post embolization for C4 brain AVM. I am still experiencing tinnitus that is even louder prior to procedure. Does this eventually subside?
I am unable to lay down flat without pressure building in my head. Sleeping in an elevated position helps. Daily activities still result in dizziness and “head rush”. My neurologist informed me not to air travel for a year. I’ll accept that advice because going up in elevation over a 1,000 feet traveling in a car (driving through mountains) was very uncomfortable.
Thank you for your feedback
Welcome to our community. I was a gamma knife recipient so can’t pass along ay personal experience associated to embolization. My AVM was resolved back in 2019 when angio showed complete obliteration. I think my tinnitus was more noticeable at times after gamma knife, and my understanding was perhaps a change in blood flow interacting with the inner ear a little differently, which made it noticeable. I do still have some pulsatile tinnitus, although I rarely notice it. So likely not much help, I imagine some of our embolization folks will join in. Take Care, John.
As a former embolisation patient, I can tell you that what seems on paper to be the lowest possible impact surgery, I felt about as uncertain post operatively as you do.
What has just happened is that your blood pressure has just been replumbed in an instant. Places that have been low pressure for a long time are suddenly up to the pressure that they are supposed to be and places that were overpressured are reduced. I could hear a much louder pulse post op than pre-op and to a great extent, it felt like I had gone as much backwards as forwards.
It definitely took several months to feel “ok” and it took 1½-2 years to feel “normal”.
Having said this, what you’re describing is more like I was pre-op – dizzy, relieved when sleeping propped up on several cushions etc. – so it is difficult to know. I assume you’ve got a review with the radiologist in a week or two? If so, definitely talk to them about how you are. If you’ve not got a review, honestly I’d reach out to them. My experience is that there was nothing left to do to me post embolisation – I just had to settle into ignoring the new noises and over the 2 years I got used to it all / feel normal again. But since you sound rather more like me pre-op, I’d ask the doc next time you see them whether all is done.
My doc did indicate that he might need two approaches to my DAVF but immediately after the first, he was confident he’d done it all in one sitting. After the week 7/8 review, he was still confident but like I say, it took me much longer to be convinced myself.
Let us know how you get on: you’re almost the first person to describe symptoms I relate to so closely.
Very best wishes,
Thank you for sharing your feedback and experience. Most helpful.
I did see the images post embolization with Onyx. The connection between vein and artery is obliterated. Thank goodness!
I do need a stent implanted for stenosis, but my neurologist stated that he needs access for the next six months if “my brain decides to create another fistula “. Furthermore, he mentioned that another angiogram got images would do more harm than good at this time.
He prescribed daily Magnesium for pressure headaches which helps but I definitely feel more symptomatic now than prior to the procedure.
I had a narrowing of my right transverse sinus, which is where I had my DAVF, though I don’t understand which is cause and which is effect here. If getting a stent in reduces recurrence, that’ll be a good thing.
It definitely took me ages to feel ok and post op, I definitely felt I’d gone backwards as much as forwards. A month post is still very early.
In my mind, the less attention you can pay to what’s going on in there the better: we worry a lot about all the new noises and symptoms. If anything significant or sudden goes on, get checked out but ignoring the noises and putting the experience behind me were the most significant steps in me getting fully better.
Very best wishes,
I did embolization everything seemed normal then I almost died with seizures
The thing is the foreign AVM is still in your head
Fixed with craniotomy
Thank you for sharing your experience. I have an appointment with my neurologist in two weeks. I plan to discuss why I’m still dizzy, pressure headache and tinnitus. It’s very frustrating