Quantcast

AVM Survivors Network

Lots of questions

#1

Hello everyone. I am so so thankful for this site. I would love to get some advice if you can help. My son Bryse was just diagnosed in January with a high flowing AVM on the tip of his nose and an arterial fistula on the right side of his nose and two facial artery aneurisms 4mm and 5mm on the left. We noticed a lump and his nose being red and slightly swollen about a year and a half ago but we are just now getting answers to explain what it is. I would love to have any advice on where he should go to be seen for this and any other info on these AVM’s, fistula, and aneurisms. What happens if it bleeds or the aneurisms break? Would it be a life threatening situation? He’s not ever had a bleed so I’m not sure what to expect. Is Mayo Clinic a good option or is there better options out there? My dr. wants us to see someone in Little Rock Arkansas but I’m not sure? I can’t find any info on him other than he’s an ENT and my dr. said he specializes in vascular anomalies. Since it’s high flow the doctors here (Kansas) don’t really want to do it. Is it possible to have other AVM’s other places? He coughs a lot and says it’s drainage but my mind is wondering does he have another one in his lung? He had an angiogram done and that’s how we found out about the aneurisms, which was quite a shock, but I’m not sure they went through his lung. Anyone know how dangerous a facial artery aneurisms is? Is having an AVM mean you will have to keep fixing it? Does it never go away? Does it shorten your life? Can you have a stroke? One more thing, he’s an Eagle Scout and was planning to go on a 14 day high adventure backpacking hike in the mountains. Not easily accessible to a hospital. Would that be a safe thing for him to do with what he has going on? My dr. here thought he would be fine. I’m just not sure? That’s all for now, Sorry for the ramble, I’m just feeling so overwhelmed about everything. He’s been a healthy 18 year old until this. We haven’t really talked to a doctor that knows a lot. Any suggestions or help would be greatly appreciated. Thanks so much, Bryse’s mom

made this topic public #2