My daughter was born with her avm on her foot she has had injections 3 different times and it hasn't worked and her foot is so big now that she is 22 it's bigger then ever they are sending us to Mayo Clinic in Rochester Minnesota to see what they can help us with!!! I know they talked about amputate from knee down but that is something we don't even want to think about so if anyone has used the drs there please let me know if it's a good place? We are having to fly from Texas and it can get expensive so if anyone has info on good rates from place to stay please let us know.Thanks for listening feeling overwhelmed
It sounds like she has a pretty complex AVM. The guys at Mayo know a lot about the process and should be able to give you good advice. Denver is closer to you, did your doctors consider sending you there?
Robert Rosen MD is also a pioneering leader in the field of interventional radiology for AVMS in extremities.
I have heard of some excellent ones in your part of the country. I have viewed fotos of patients with these AVMs. After a few embos, they are sometimes able to put a compression garment on in the AM.
The only situation worse than my VM would be watching a child with it. I was not treated till I was age 49, so the valves in my deep thigh veins were already useless.They do not close so there is venous stasis. There was nothing but amputation available to me as a child, and infection rate was high. Recently, a compression garment is helping.
I found the best predictor of success was one nidus that could be eliminated. Well, it was a sad day when I realized I had multiple niduses. Too many to address. Mine is not all that obviously big; but incredible pain due to gravity. Birthmark.org might help you. And Ronald McDonald.
I wish you all the best in this journey! I consider myself to have KTS, so look at their CLOSED FB community. We just realized the other FB KTS group was open; One young woman opened up and then discovered her FB friends were reading it. It was all being posted as a link on a FB page.
You did not mention where your daughter had the first few treatments? And ask Mayo Clinic Pt Relations for info on discounted places to stay. Ronald McDonalds are not only for kids.
They said Mayo Clinic or Cleveland! We have tried here but no results
She had her first 3 in Dallas at the THR hospital and we did our second advise with different Dr and he saw the MRI and said we need to go Cleveland or màyo and I called Mayo they said Minnesota because that's where they treat avms
Dr. Wayne Yakes in Denver is treating my LVM in my leg. He invented the treatment with alcohol as an embolizing agent in the 80’s, and continues to be a leader in the treatment of vascular malformations. I’m only 6 treatments in, but have nothing but wonderful things to say about him and his entire team. Check them out as they are closer to you; he is wonderful. Best of luck to her - I’m struggling and praying this results in a cure or at least major reduction in size. She’ll be in my prayers!