# Brain Dural AV Fistula **URL:** \ **Category:** Brain DAVF\ **Created:** [October 15, 2016, 12:37pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167 "2016-10-15T12:37:53Z")\ **Posts on this page:** 19\ **Page:** 1
**Author:** ![wales](https://avatars.discourse-cdn.com/v4/letter/w/5fc32e/32.png) [@wales](https://avmsurvivors.org/u/wales)\ **Post date:** [October 15, 2016, 12:37pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/1 "2016-10-15T12:37:54Z")
I have been told I have (at least one) brain dural fistula. The symptoms are absolutely horrendous, ruining my entire life. It is not just the vascular tinnitus and headaches that I am experiencing, it is a very long list of severe neurological symptoms. I also have a serious heart condition which was actually caused by a heart ablation. I would love to hear from anyone else with this and what their symptoms are. ---
**Author:** ![anng](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/anng/32/6655_2.png) [@anng](https://avmsurvivors.org/u/anng)\ **Post date:** [October 15, 2016, 10:48pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/2 "2016-10-15T22:48:36Z")
BBC I had several DAVF. They were able to get 90% with Onyz glue. The last 10% was done with the Gamma Knife. It takes at least two years to know if the last 10% was obliterated with Gamma Knife. The waiting is terrible but you have to go on with life, which took me sometime to adjust. ---
**Author:** ![wales](https://avatars.discourse-cdn.com/v4/letter/w/5fc32e/32.png) [@wales](https://avmsurvivors.org/u/wales)\ **Post date:** [October 15, 2016, 11:07pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/3 "2016-10-15T23:07:57Z")
I am so sorry, it is horrendous, I know. Prior to the procedures, were you suffering with a lot of neurological symptoms? I have so, so many. Ruining my life. ---
**Author:** ![Andrea\_F](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/andrea_f/32/589_2.png) [@Andrea\_F](https://avmsurvivors.org/u/Andrea_F)\ **Post date:** [October 16, 2016, 3:18am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/4 "2016-10-16T03:18:52Z")
Hello, I just found out I have one yesterday. Mine was caused from getting treatment from my avm that is now gone!! Because I had the avm which has brought on seizures and headaches I don’t know which one is causing the headaches to be HORRIBLE. I don’t know how they are going to treat it yet. I also don’t know how long I have had it. It wasn’t there as of October 30 2013. So some time since than it developed. So in the last 2-3 yrs I cant say if that has also caused my neuro symptoms to be worse. Best of luck, let me know what your treatment is going to be. ---
**Author:** ![anng](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/anng/32/6655_2.png) [@anng](https://avmsurvivors.org/u/anng)\ **Post date:** [October 16, 2016, 10:24am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/5 "2016-10-16T10:24:05Z")
Started with a seizure. They said at first I had brain cancer. Took one month to fine out that it was not cancer but DAVF. I had the pulsation for a long time, only heard it if I were lying on my left side. It affected my eye sight & toleration. The Keppra was hard to tolerate. Hope you are doing better. Pls explain your problems with me. I don’t know anyone with this problem. ---
**Author:** ![amcoffey](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/amcoffey/32/6792_2.png) [@amcoffey](https://avmsurvivors.org/u/amcoffey)\ **Post date:** [October 17, 2016, 12:30pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/6 "2016-10-17T12:30:39Z")
Hello! I was just wondering what exactly a brain dural fistula is? I currently have an AVM and have had it treated with cyber knife radiation, is it caused from treatment? Thank you! Alyssa ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [October 18, 2016, 7:36pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/7 "2016-10-18T19:36:07Z")
Alyssa, there is what appears to be a well-founded article here that sets out AVMS, including Brain Dural AVMS: [https://www.stroke.org/en/about-stroke/types-of-stroke/hemorrhagic-strokes-bleeds/what-is-an-arteriovenous-malformation](https://www.stroke.org/en/about-stroke/types-of-stroke/hemorrhagic-strokes-bleeds/what-is-an-arteriovenous-malformation) I’m less sure of the statistics given for the prevalence of AVMs, which I’m sure I’ve seen cited elsewhere as about 14 people per million population but otherwise, it seems scholarly and consistent with other articles I’ve read. Hope this helps. DickD ---
**Author:** ![amcoffey](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/amcoffey/32/6792_2.png) [@amcoffey](https://avmsurvivors.org/u/amcoffey)\ **Post date:** [October 19, 2016, 11:02am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/8 "2016-10-19T11:02:30Z")
Wow thank you so much for this! ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [January 12, 2017, 8:41pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/9 "2017-01-12T20:41:47Z")
I’ve found where I got the 14 per million statistic from and I’ve misquoted it. The stat is that about 14 cases are discovered per million population in the USA, not that the prevalence is 14 per million. My revised understanding of prevalence is about 1 in 1000, so still “rare” but not as rare as I was reporting. Sorry for mis-reporting. Information from Wikipedia. Richard ---
**Author:** ![jap001](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/jap001/32/14301_2.png) [@jap001](https://avmsurvivors.org/u/jap001)\ **Post date:** [January 28, 2017, 9:28pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/10 "2017-01-28T21:28:45Z")
So I’ve just been diagnosed with a large and significant Dural AV fistula on the lateral and sigmoid venous sinuses (back left of head). I’m terrified and due to have this DSA test next week. They have already done a dye CT scan but need a clearer picture before deciding what they need to do. The thought of a catheter going up my artery from groin to brain scares me so much. ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [January 29, 2017, 11:06am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/11 "2017-01-29T11:06:36Z")
@jap001 Can I say, my view of the catheter embolization is that its not the biggest deal in town. Lifting the lid and rummaging around in an open top is what would bother me. I look upon the catheter + radiology guidance thing as a miracle of modern technology that really makes a difference to how positive an outcome you can get from neurovascular surgery. What I’ve read is that the contrast material can give you a rubbish head for a few days and the incision point is obviously not insignificant and can be sore but its really low impact compared with lid off. I remember Bill telling me about his experiences when I first joined this site and it was the foley catheter, not the embolisation catheter he found most challenging. Link [here](http://www.avmsurvivors.org/t/the-process-of-diagnosis-takes-a-long-time/15661/2) Think positive. No point worrying about it. Richard ---
**Author:** ![jap001](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/jap001/32/14301_2.png) [@jap001](https://avmsurvivors.org/u/jap001)\ **Post date:** [January 29, 2017, 12:53pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/12 "2017-01-29T12:53:19Z")
You’re right…this is just such a shock. And the thought of anything going into my brain is terrifying. ---
**Author:** ![Bill4](https://avatars.discourse-cdn.com/v4/letter/b/839c29/32.png) [@Bill4](https://avmsurvivors.org/u/Bill4)\ **Post date:** [January 29, 2017, 6:51pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/13 "2017-01-29T18:51:31Z")
Hi Richard, Foley Catheter-Bill here. Judging by your latest message, seems you’re doing well. Catheter embolization…no problem! Excellent attitude. This June marks twenty-four years since my surgery. Looking back I wish that this support group was around, and that Foley’s weren’t of course. Our stories here are great, true life, lessons and testaments that post AVM life can be grand, fulfilling, and long. All depends on how we choose to proceed. Please keep us all apprised on your progress. Best Regards, Bill ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [January 29, 2017, 10:56pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/14 "2017-01-29T22:56:22Z")
@Bill4 I’m with you on the foley! Don’t fancy that at all! It’s all your fault I’m unreasonably positive about the op! It’s a real help to have your story as my first response. I might have to thank you forever. Rich ---
**Author:** ![anng](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/anng/32/6655_2.png) [@anng](https://avmsurvivors.org/u/anng)\ **Post date:** [July 21, 2017, 3:31am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/15 "2017-07-21T03:31:17Z")
How are you feeling? Never new that could happen after AVM. Best of luck. ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [July 30, 2017, 7:58pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/16 "2017-07-30T19:58:51Z")
3 posts were split to a new topic: [Private Messages](https://avmsurvivors.org/t/private-messages/18102) ---
**Author:** ![June1107](https://avatars.discourse-cdn.com/v4/letter/j/7ea924/32.png) [@June1107](https://avmsurvivors.org/u/June1107)\ **Post date:** [July 27, 2017, 12:52am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/19 "2017-07-27T00:52:47Z")
I was diagnosed about 2 years ago. At one point the pulsating stopped for a few months. On July 19 2017 I had surgery. They went through the artery and the vein. They did the glue. In 6 months I have to go for another angiogram to see how it went. I hope they got the whole fistula. I don’t have the pulsating anymore. ---
**Author:** ![anng](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/anng/32/6655_2.png) [@anng](https://avmsurvivors.org/u/anng)\ **Post date:** [November 26, 2017, 10:36pm UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/20 "2017-11-26T22:36:33Z")
ZHow are you doing? Please send me a private response. Also could you explained your DAVF. Thanks ---
**Author:** ![anng](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/anng/32/6655_2.png) [@anng](https://avmsurvivors.org/u/anng)\ **Post date:** [December 6, 2017, 10:19am UTC](https://avmsurvivors.org/t/brain-dural-av-fistula/16167/21 "2017-12-06T10:19:32Z")
II am feeling great. My DAVF is still not closed. I ‘m going to wait until next year to find out my status. I can’t deal with the fact that it’s closed at this time.