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.
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.
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 donāt know which one is causing the headaches to be HORRIBLE. I donāt know how they are going to treat it yet. I also donāt know how long I have had it. It wasnāt 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.
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 donāt know anyone with this problem.
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!
Iām less sure of the statistics given for the prevalence of AVMs, which Iām sure Iāve seen cited elsewhere as about 14 people per million population but otherwise, it seems scholarly and consistent with other articles Iāve read.
Iāve found where I got the 14 per million statistic from and Iāve 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 ārareā but not as rare as I was reporting. Sorry for mis-reporting.
So Iāve just been diagnosed with a large and significant Dural AV fistula on the lateral and sigmoid venous sinuses (back left of head). Iām 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.
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 Iāve 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
Foley Catheter-Bill here. Judging by your latest message, seems youāre doing well. Catheter embolizationā¦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 Foleyās werenāt 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.
@Bill4 Iām with you on the foley! Donāt fancy that at all!
Itās all your fault Iām unreasonably positive about the op! Itās a real help to have your story as my first response. I might have to thank you forever.
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 donāt have the pulsating anymore.
II am feeling great. My DAVF is still not closed.
I ām going to wait until next year to find out my status. I canāt deal with the fact that itās closed at this time.