I have a dural fistula brain avm. Nothing happened yet.I have this weird sound in my ears, but it is so much better after the third embolization. The next step is going to be to take out the avm or to put clips in.
Dr did explain to me, because my bloodflow is going the wrong way it is more
difficult if it where to start bleed.
Now my question is should i just leave it as it is or do the big operation
were they open the skull.
I am still young and want to have babies in the near future.
What to do???
Hi! I think everyone is different but my husband has been dealing with a large, complex dural AV Fistula since 2010. Thank God, so far, he has not had a bleed but he's had countless endovascular embolizations and he has had a 2 stage craniotomy to try and cure him. Unfortunately, since his fistula is complex and located in the "Torcula," there is no way to cure him. He's been seeing Dr. Robert Spetzler at the Barrow Neurological Institute in Phoenix Arizona and we are very happy with he and his team (Dr. Cameron McDougall is the endovascular doc). We were treated at Jefferson Hospital for Neurosurgery in Philadelphia, PA but decided to look elsewhere when they told us it was just a matter of time and there was nothing else they could do for us. That was in Spring of 2012 and since then, my husband had his craniotomy and more embolizations in February of this year. Each time they go in, they've been able to correct the flow of drainage... alas, it doesn't stay that way.
Continued prayers appreciated. I know you're in South Africa and I pray there are talented providers out there!
Please let me know if I or my husband can support you in any way.
Hi Scarycat. I think only you can answer that. But it really depends on your own feelings and how bad your symptoms are. My own AVM has not been treated and so far I have decided to leave it alone. It has not given me any bother aside from causing Hydrocephalus (water on the brain) for which I have a Shunt. There is a conversation going on elsewhere in this site about AVMs causing a noise in the head. I have always had this but didn't know that other people without an AVM didn't!! For some the discovery of an AVM means 'treat at all costs'. And for others like me its more 'wait and see what nature has in store for you'. Interestingly one reason I decided against treatment for now was that I wanted to have children. I am now a mother of two so that worked out well for me. Good luck with whatever you decide. Lulu x