After multiple tests: CAT scan, MRI, angiogram–my interventional radiologist discovered that the DAVF he thought he had fully repaired in September 2025 was not fully closed.
He did a second DAVF surgery one month ago on January, 8, 2026. Unfortunately, I feel like I have continuing symptoms even after the second embolization. I feel dizzy at times, my balance is still impaired and my short-term memory loss continues.
Does anyone have any information about the side effects of having a second DAVF brain surgery on the left occipital lobe within 16 months of the first one? I have read that it can take three months to assess the benefits of having a second DAVF surgery.
I would welcome hearing your experiences and suggestions!
Wish I had experience or advice to share to help you through this, Susie. I haven’t had my dAVF embolization yet- it’s scheduled for April 9th. I just wanted you to know I read your post, and someone did hear you.
Hi Sara,
Do u have spinal davf embolization schedule in April, If so whats size and location.
As per my soinal davf at t6-7 Experience neuro surgeon initially checked n tried embolization twice but later went for full long 6 hour surgery coz they assess my case recurrence was much possible via embo.
Since last 4 years seems no recurrence seen in mri . Lets hope for best
I’m sorry to hear about your experience. I don’t have any advice, unfortunately. I have seen that replumbing can cause symptoms after. I am 4 months post embolisation for a DAVF cognard 4/ Borden 3 of the superior sagittal sinus and have been having new and worsening symptoms over the past couple of months. I’ve been told everything looks normal on CT and MRI, but I am pushing for my angiogram to be brought forward. I’m in the U.K. and it seems that here it’s common to only do an angiogram at 6-9 months post.
My Neuro team have been very dismissive as they believe that the only symptom that DAVFs cause are pulsatile tinnitus. If you don’t mind me asking, where was your DAVF and do you know the grade?
For info, I had my first repeat angiogram at about 8 weeks post op. My timeline:
3 Apr 2017 catheter embolization procedure of DAVF right occiput. The interventional radiologist told me while I was in hospital for a few days that he was sure he’d blocked it off in one sitting but I’d have a repeat angiogram at about 8 weeks. I was unconvinced that it was 100% occluded.
End May 2017 repeat angiogram: definitely looks occluded (but honestly, I was still unconvinced).
Sep or Oct 2017, I had an unusual dizzy spell, which felt like something regressing rather than things moving in the right direction. I went back to the GP and saw the useless GP. He referred me back to neurosurgery.
Mar 2018 saw the neurosurgeon for the first time. He was wholly dismissive. However, he acceded to my request for repeat scans.
Apr-May 2018 I had two MRIs (I think the first took pictures of the wrong things) and an angiogram.
Aug-Sep 2018 had to chase the neuro for the outcomes.
The outcomes were that there was “nothing physiologically amiss” so I was recommended again to just “resume normal life”. I resolved to do so, a little reluctantly to start, but after 2 years post op, felt that just ignoring the weird sensations was the right thing for me to do.
I do think it takes a long time to feel better post op and I also think that we can obsess a bit over the weird sensations: I’m not sure that we should expect “normality” to result from an operation. Rather, a new “abnormality” has been implemented that just happens to reduce our stroke risk from what it was. But wearing a couple of cc of glue in your head isn’t “normal”: it’s a new normal.
2 years plus, I was more ok about it and 9 years plus, I’m definitely “normal”. I don’t drink a lot of alcohol and I avoid caffeine, so I don’t know how they would affect me but to all intents and purposes, “normal”!
Dear Ree:
Many thanks for taking the time to reach out to me!
I’m sad that your Neuro Team has been very dismissive towards you! How frustrating and distressing!
I believe I should have had a follow-up angiogram at 6 or 12 months following my DAVF surgery. Sadly, it took LOTS of pestering multiple doctors to get a follow-up angiogram at 16 months. . . .
I did have my second DAVF surgery on January 8th, 2026. My DAVF was in the left occipital lobe, impacting vision, balance, and short-term memory. I don’t know the grade. . .The surgeon did recognize that he had NOT fully closed the fistula from the prior surgery on September 12, 2024. For the first time, I heard that I had a very large fistula. . . I’m glad I was persistent in advocating for a follow-up angiogram! I also feel more relieved that I probably won’t get a brain hemorrhage. It’s exhausting to be a self-advocate–but it makes a difference!
I wish I could say that the 2nd surgery has made a positive difference. From what I’ve researched on the internet, having a second DAVF surgery takes more time to recover–more like 3-6 months. I’m currently at 3 months. Since it impacted my balance and vision, I still don’t feel safe to drive on the freeway, but I can drive on local streets. I use a cane for balance. I’m still experiencing unexplained “pressure” or tension in my head that no one can explain. Unfortunately, there’s not much research on DAVF surgery outcomes, and even less with a second DAVF Surgery. . ..
I hope that you receive better medical support!
Blessings,
Susie
Dear Richard:
Many thanks for being our moderator!
I’m glad to hear that after 9 years you’re feeling more “normal”! Congratulations for your persistence!
I also avoid caffeine and I’m a non-smoker. I only drink about 1-2 oz of alcohol a week.
I did have my second DAVF surgery on January 8th, 2026. The surgeon did recognize that he had NOT fully closed the fistula from the prior surgery on September 12, 2024. For the first time, I heard that I had a very large fistula. . . I’m glad I was persistent in advocating for a follow-up angiogram! I also feel more relieved that I probably won’t get a brain hemorrhage. It’s exhausting to be a self-advocate–but it makes a difference!
I wish I could say that the 2nd surgery has made a positive difference. From what I’ve researched on the internet, having a second DAVF surgery takes more time to recover–more like 3-6 months. I’m currently at 3 months. Since it impacted my balance and vision, I still don’t feel safe to drive on the freeway, but I can drive on local streets. I use a cane for balance. I’m still experiencing unexplained “pressure” or tension in my head that no one can explain. Unfortunately, there’s not much research on DAVF surgery outcomes, and even less with a second DAVF Surgery. . ..
Blessings and much appreciation for ALL you do to support this AVM Survivor’s Network,
Susie
Good luck with the recovery! It’s good you got to the bottom of the persisting problems. If you do better than me, maybe your 3-6m time frame will be a good one but if it takes longer, don’t lose faith in it!
So let us know how you get on because we can all help others who will come along later with similar troubles. There aren’t enough people with a DAVF here to help people along. (Obviously, I don’t wish anyone to have a DAVF, I just feel a bit on my own. I think there’s about three dozen of us with a DAVF here so far.)
) and an angiogram.
How frustrating and distressing!