Hi all. 34 year old male here. Around my early teenage years, I was diagnosed with an AVM in my right thigh, and had a few embolizations. Around 2014, they were more vaguely calling is a Venous Malformation, and did a few sclerotherapy treatments.
Most recently, my doctor in Indianapolis thinks that I have Fibro-Adipose Vascular Anomaly (FAVA), which is a much rarer form of vascular anomaly, and results in “tough, fibrous, fatty tissue” growths ocurring where they shouldn’t, and causing pain.
Has anyone else here been diagnosed with FAVA? I’ve read a number of research articles (happy to share my list) mentioning that FAVA doesn’t respond as well to sclerotherapy, so I’m hoping to find some people who have explored other treatments (the leading one seems to be cryotherapy/cryoablation).
Thanks! @DickD Is this community appropriate for discussion around vascular anomalies outside of AVMs? I know they’re related as anomalies/malformations, but they’re certainly different.
Definitely! It is all very closely related and we welcome people with pretty much any variation of vascular anomaly, not least because often initial diagnoses indicate one thing which sometimes turns out to be something slightly different, just like with you.
I’m a 35 year old female, diagnosed with a vascular anomoly in my left thigh when I was 9. I had three sclerotherapies over the course of several years. The AVM grew back every time. Every time it came back, it was much more painful. I was originally misdiagnosed as having a hemangioma. They didn’t start calling it an AVM until I was 18 and I got a pathology report back from a surgical removal in St. Louis that almost killed me. Those doctors misdiagnosed me as having some form of lymphoma. That’s why they removed it when they absolutely shouldn’t have. Next, I had two surgeries in New York with Dr. Rosen. He diagnosed the AVM properly and treated it with an embolization. I was 22 when I had my last surgery. I still get some residual pain from scar tissue or something, but it is not anything like it was before the embolization. I’ve never heard of FAVA. Sounds interesting. I would recommend getting a second opinion with Dr. Robert Rosen at The AVM Center in New York. He’s a true extremities expert.
I saw your post and while my current diagnosis turned out to not be FAVA, when I first started seeing doctors, that is what the initially thought it was. A few years later docs found out that what I have is just a large venous malformation.
Your post also stood out to me because I am currently in Indy as well and have had trouble finding specialists that understand this condition, I know that yours is slightly different but would you mind sharing if you’ve found a doc in the area who seems pretty well versed in this?
Hi @Jessicaann! I’ve been seeing Dr. Marshalleck. From what I’ve heard, he’s the only specialist in the state that deals with vascular anomalies. Feel free to reach out with any other specific questions!