I’m thankful that you exist for support and resources!
I had my DAVF surgery in September 2024. Within a few weeks, I noticed my symptoms returning of dizziness, short-term memory loss, balance problems, and challenges with vision and depth perception. I had my 1-year follow-up consultation yesterday, and everything seems “normal” on my recent CT Angiogram. Yet, the doctor has no explanation for my symptoms and is referring me to my neurologist.
I’m wondering if I am having a reaction of brain inflammation to the embolization materials? I am chemically sensitive to other medications, etc. When I looked on the internet, they describe symptoms of Chemical-Induced Brain Inflammation that match my cognitive and neurological concerns. Since it’s too risky to remove the brain embolization materials, what are my options?
Has anyone else experienced this reaction? If so, please share if there’s something you did that helped to reduce/eliminate these symptoms!
I think I’d go for a second opinion, if I were you. See what new doc wants to look at, get a scan of whatever he/she wants to look at and go from there.
Your symptoms don’t sound trivial. I had some different symptoms post op but pretty much immediately post op. I did have some odd dizziness at about 6 months post op and I felt very unusual, had a day or two of concerning dizziness and then a bunch of toing and froing of a bit of dizziness or oddness one day and maybe a week later everything much more normal. To a great extent, recovery doesn’t seem to be a linear thing but if you’ve got stuff that is more significant going on, it wouldn’t be the right thing to ignore it.
I spent two years before I got to feel back to “normal” and obviously you get quite hypervigilant towards any oddness. I got an MRI and angiogram at 1 year post op but hadn’t had anything significant for a while, it just felt “odd” mostly. And again my doc said, “I can’t see any physiological reason for you to feel unwell. You probably just need to get used to the new pressures.”
It took until 18 months post op to close out those investigations – nothing found – and further six months of me deciding to accept his recommendation to “Just resume normal life” before I felt basically “normal”. So there’s an element of being patient and recovery not being linear that you might consider but if it is significant then you do need to make sure there’s nothing untoward going on.
With a DAVF being very much on the surface, I’m surprised surgery isn’t a possibility. It’s not like some people who have an AVM deep in their cerebellum: as a patient (rather than a doctor) it seems more accessible by surgery but perhaps this is me being naïve.
Dear Dick:
Many thanks for your quick response to my post!!!
I appreciated reading about your experience and your suggestions.
It was helpful to read that it took almost 2 years for you to feel more “normal” and as you coped with feeling “odd.”
I will contact my neurologist about possible options/medications.
With much appreciation,
Susie
I looked back over my log at the time (I linked it in the post if you take a look) and actually, I was probably nearer how you feel than I feel about it today. For me, everything checked out and the job at hand was to chill out about it. I do think it is important to talk to the doc about anything that seems significant, though.
Let us know how you get on because we are definitely interested!
Thanks for including the link to your multiple posts a few years ago! It is certainly frustrating to have medical professionals discount your experience😆
FYI–My surgeon told me I couldn’t drive on the freeway at all for a year after my surgery. I thought this would be temporary, but my dizziness and vision/depth perception issues confirm that this would NOT be safe for me to do. I use the app on my phone to avoid highways when getting around, but it limits how far I can travel. . ..
I’ve included the information below that I found on the internet to support others re: “Chemically Induced Inflammation from Embolization Agents.” This describes many of my symptoms and perhaps why my head has felt “heavy” after my DAVF. I am following up with my neurologist to explore options to cope better with the symptoms.
"Following surgery for a dural arteriovenous fistula (DAVF), chemical-induced brain inflammation can cause a range of neurological and systemic symptoms. This inflammation may result from the use of liquid embolic agents, such as glue (n-butyl cyanoacrylate) or Onyx, used during endovascular embolization to seal the fistula.
Neurological symptoms
Headaches: Severe or new-onset headaches are a primary symptom. In some cases, they can be migraine-like.
Seizures: Abnormal brain electrical activity can trigger new or recurrent seizures.
Cognitive issues: Inflammation can cause cognitive dysfunction (POCD) with symptoms ranging from reduced concentration to severe dementia-like symptoms, particularly in older patients.
Confusion and altered mental state: Postoperative delirium (POD) is a common inflammatory-related complication that can cause a fluctuating, confused mental state and inattention.
Speech and language difficulties: Problems with speaking or understanding speech can occur.
Vision problems: These may include double vision, blurred vision, or vision loss.
Motor and coordination issues: Inflammation can cause weakness, numbness, poor coordination, or trouble with balance."
I didn’t see which embolization compound was used - also, I’m not sure if the missed - this was a single embolisation?
I got one single embolization when I hemorrhaged in 2020. It took me years to feel this “regular” - for years after I had somewhat similar symptoms. Dizziness, random spells of being tired, my right side went numb multiple times. . . 5 years later, I feel the most “fine”
Typical check up procedure goes in sequence of, CT, MRi then Angiogram - I still get symptoms, they’re difficult to describe. But, all imaging checked out fine.
Dear Mike:
Many thanks for your response to my Email About symptoms after my DAVF embolization materials.
I appreciate learning that it took you several years to recover. This puts my experience into a larger perspective.!
susie