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 AVMās, fistula, and aneurisms. Iām 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 hasnāt for a few years. What happens if it bleeds or the aneurisms break? Would it be a life threatening situation? Iām 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 Iām not sure? I canāt find any info on him other than heās an ENT and my dr. said he specializes in vascular anomalies. Since itās high flow the doctors here (Kansas) donāt really want to do it.
Is it possible to have other AVMās other places? He coughs a lot and says itās drainage but my mind full of anxiety is wondering does he have another one in his lung? He had an angiogram done and thatās how we found out about what he has, which was quite a shock, but Iām 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? Heās 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. Iām just not sure?
Sorry for all the questions, Iām just feeling so overwhelmed about everything. Heās been a healthy 18 year old until this. We havenāt really talked to a doctor that knows a lot. Any suggestions or help would be greatly appreciated. Thanks so much, mom
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 āFacial AVMā group. Join if you can. We are a rare bunch! My son is 10 with avm in ear, tongue, cheek and chin.
I travel to see Dr. Wayne Yakes at the Vascular Malformation Center at Swedish Medical Center in Englewood CO. Donāt be afraid to ask to have records send to multiple specialists for second opinions. I did and thatās 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!
Iām sorry to hear that this has become a reality for you and your son. Iām glad he has you; someone who is searching for him, going to advocate for him, and support him. Iāve heard great things about the doctors mentioned above. Someone who has been super helpful to me is Dr. Alejandro Berenstein. Hereās 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, Iām not a doctor and can only speak from experience, but Iāve been operated on by a handful of doctors (two who have been the ābestā in the field, Dr. B being one of them). And I must say that Iāve 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 heās 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 issueā¦ Thatās something thatās different for everyone. I had my first operation at nine years old, and have had around 15 since then. Iām 21 now. But I have a friend who has only had one operation for their AVM and theyāre 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. Bās 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 whatās 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.
Thank you for your response. I am trying to stay positive but the more research that I do Iām getting more terrified of what could happen. Besides the AVM he has these facial artery aneurisms. How serious of an issue is that? I havenāt really found any info on that. He likes to camp, be outdoors and now Iām worried because what if something ruptured? Iāmhoping 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? Iām so scared right now. Please help if you have any info I would greatly appreciate any advice.
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 wouldnāt embolize first. Everyone else that weāve 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. Iām just curious if you could give your experience with him. Thanks for your help.
I understand; it can be a lot to think about.
Iāve bleed quite frequently for most of my life. Whatās been important for me to keep going isā¦ 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. Iāve 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 whatās going on before anything serious can happen. If I know Iām going on a trip and Iām worried about a bleed or something happening, usually Iāll tell someone around me whatās going on (e.g. āIn case X happens can you please do Y to help me?ā). Iāve found most people are happy to help.
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 hasnāt 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.
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