Hey guys, was wondering if anyone has had this done and how people feel on it. My son (6yrs) has recently been diagnosed with AVM (but has had it since birth). He has it in his middle finger. The doc's at the Calgary Children are wanting to amputate. I really really really don't to go that rout if there are other options. Would LOOOOVE to hear some feed back...x
Hi Mel. I did a search on here for you…http://www.avmsurvivors.org/main/search/search?q=Ethanol+embolization
You may wish to contact a friend of mine on here…
Her son had this treatment done. His was in his foot. She has a wealth of experience in dealing with an extremity AVM.
Thanks so much for the info Barbara. Everyone is just so wonderful and helpful on this site. It warms my heart seeing the compassion, dedication, determination, and support from so many wonderful people. x
Hi Mel! That seems extreme measure for the docs at Childrens to want to amputate. They may not be too sure about avms in general and I would recommend getting more opinions. As many as you can, after finding any vascular anomalies specialist. Hopefully you will be able to find a couple more doctors with this interest. Luckily, its in his finger. Sheesh, my son's is in his cheek and tongue would they amputate that? On the Brainers-amputate? Not an option and there are successful treatment being done, just have to find the right doctor that knows AVMs. I'll write more later..
hi Mel, I consulted with three specialists so far, to understand my options... we have been told Ethanol Embolization is the way to go for us, we are researching the impact of this treatment as it can have complications like skin necrosis... I suggest you get a 2nd, even a third opinion! --and even then the choices presented are not a walk in the park.
Take care and best of luck, Ana
My son Tommy, (8yrs) has recently had 3 Major AVM’s embolized and has not had any major complications. The team in Chicago at Anne and Robert H Lurie Children’s hospital is amazing. They have a vascular anomolie clinic. I can assure you that from all that we have learned, amputation is a very last resort. Many Dr’s do not have a. Clue about AVM’s . Good luck with your sons treatment wherever you may go.