Quantcast

AVM Survivors Network

18 year old son was just diagnosed

#1

Hello everyone. I am so so thankful for this site. 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

#2

Hi! I know how overwhelmed you feel. You are doing well with learning as much as you can and finding the correct doctors that can help your son. Little Rock has one of the best AVM doctors in the world. Many people travel from foreign countries to see Dr Richter and Dr Suen. We travel from Maryland to see them. They know AVMs well and you will feel relieved to find doctors that understand and can beat answers questions. All AVMs are so different. Some small and simple, some huge and complex. Contact Little Rock and get an appt scheduled. You will find they are the most caring doctors. They are also doing research to help find better treatment and cure for AVMs. If you are on Facebook, their is a “Facial AVM” group. Join if you can. We are a rare bunch! My son is 10 with avm in ear, tongue, cheek and chin.

#3

I travel to see Dr. Wayne Yakes at the Vascular Malformation Center at Swedish Medical Center in Englewood CO. Don’t be afraid to ask to have records send to multiple specialists for second opinions. I did and that’s how I ended up going to Dr. Yakes. (he also has great reviews on Healthgrades.com Vitals.com and google.) malformations can be scary and can lead to complications. Treatment can be full of complications as well. However, only the MD can answer most of your questions as only they know the extent/severity of the AVM. AVMs are notoriously tricky to treat. Best of luck to you on this journey!

#4

I’m sorry to hear that this has become a reality for you and your son. I’m glad he has you; someone who is searching for him, going to advocate for him, and support him. I’ve heard great things about the doctors mentioned above. Someone who has been super helpful to me is Dr. Alejandro Berenstein. Here’s the link to his medical site: https://www.mountsinai.org/profiles/alejandro-berenstein
He even has a TEDxTalk on treatment for AVMs https://www.tedmed.com/talks/show?id=7069 . Listening to this talk helped me better understand how he treated my AVM.
Now, I’m not a doctor and can only speak from experience, but I’ve been operated on by a handful of doctors (two who have been the ‘best’ in the field, Dr. B being one of them). And I must say that I’ve had the most positive experiences with him. I have an AVM in my left lower cheek and mandible bone. Dr B has had a great deal of experience treating facial AVMs, and he’s one of the few people out there I really trust.
In response to your questions about how long you may have to treat AVMs or how long it can be an ongoing issue… That’s something that’s different for everyone. I had my first operation at nine years old, and have had around 15 since then. I’m 21 now. But I have a friend who has only had one operation for their AVM and they’re doing fine. I hope nothing but the best for your son; and that you are able to find the treatment team that is right for your family.
One other thing that I really like about Dr. B’s treatment team is that it truly does feel like a team of people who are there for you. Dr B is very good at explaining what’s going on in lay language, his NP and PA are also great, and he also has a social worker that is there to help with the emotional side of this illness.
Please feel free to reach out to me if you have any more questions.

#5

Thank you for your response. I am trying to stay positive but the more research that I do I’m getting more terrified of what could happen. Besides the AVM he has these facial artery aneurisms. How serious of an issue is that? I haven’t really found any info on that. He likes to camp, be outdoors and now I’m worried because what if something ruptured? I’mhoping to see Dr. Suen soon but in the meantime my mind is racing with all kinds of awful thoughts. Have any of you had aneurisms? Or a bleed of any kind? His is a high flow on the tip of his nose with two facial artery aneurisms. 4mm, 5mm. Are those large for aneurisms? I’m so scared right now. Please help if you have any info I would greatly appreciate any advice.

#6

Hi ConnieK. We just visited with Dr. Suen this past week. He is definitely very knowledgeable. His age makes me a bit nervous since we are just starting out on this journey. One thing that really kind of shocked me was he said that he wouldn’t embolize first. Everyone else that we’ve talked to said that would be the first thing to do. So I have a little bit of nerves about that. My son has an AVM on the tip of his nose. He also has a fistula and two facial artery aneurisms. I’m just curious if you could give your experience with him. Thanks for your help.

#7

I understand; it can be a lot to think about.

I’ve bleed quite frequently for most of my life. What’s been important for me to keep going is… exactly that, I have to keep going. Keep doing the things I love regardless of what can happen. Traveling is a big thing for me. I’ve traveled from the U.S. to Europe and Asia by myself. Sometimes I worry knowing that something can happen with my AVM. But I try to live my life the best I can anyway. Its a journey- and a process.
I think your son though will still be able to enjoy activities he loves too. Its important to be prepared and have those around you know what’s going on before anything serious can happen. If I know I’m going on a trip and I’m worried about a bleed or something happening, usually I’ll tell someone around me what’s going on (e.g. “In case X happens can you please do Y to help me?”). I’ve found most people are happy to help.

made this topic public #8
#9

I have an AVM on my nose as well! I had it minimized with the help of Dr. Alegandro Berenstien and Dr. Milton Waner (https://www.vbiny.org/).
My AVM will never go away. I have been told that having surgery once more after I am done having kids is advisable;e for me. My AVM will continue to grow, I just have to monitor it to the best of my ability. It hasn’t hindered me in anyway, I just had to be mindful that I did not get hit directly on my nose. I did have a facial malformation because of it, but I have a loving husband an an overactive one and a half year old.

1 Like