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AVM Survivors Network

18 year old son just diagnosed

#1

Hello everyone. I am so so thankful for this site and I would love to get some advice if you can help. My 18 year old son 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. I’m learning a lot but I still have questions.

He has never had a bleed that I know of. Used to get bloody noses but really hasn’t for a few years. What happens if it bleeds or the aneurisms break? Would it be a life threatening situation? I’m not sure what to expect. He likes to hike and camp. Should he still do that? Especially in back country?

We are looking at different doctors to see.

Is Mayo Clinic a good option or is there better options out there? His ENT 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 full of anxiety is wondering does he have another one in his lung? He had an angiogram done and that’s how we found out about what he has, which was quite a shock, but I’m not sure they checked his lung.

Anyone know how dangerous a facial artery aneurisms is? Has anyone had an aneurism with their AVM?

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? He’s an Eagle Scout and was planning to go on a 14 day high adventure backpacking hike in the mountains in July. 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?

Sorry for all the questions, 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, mom

made this topic public #2
#3

Perhaps, the most important thing to remember is there will be so many things in your families lifes that will require change, constantly trying to adapt to change is not easy, I know I had a bleed three years ago and all the changes I have needed to make and still continue to make. But I have never lost hope. Always believe in the power of hope and your son’s and your family’s belief things will get better, may take time, but give it a chance.

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