I’m 38 years old and have had a knee AVM since I was 12. I’ve had several embolizations. The last embolization didn’t help right away according to images. I also have birthmarks up my entire thigh to my hip and my thigh and knee have been swollen since I was 12 as well. I’ve always had pain in my entire leg and thought it was due to my knee AVM. It turns out due to a recent MRI I have another AVM in my right pelvis, encasing my entire illiopsoas muscle. Also, there is another muscle in my thigh that looks like it could be an additional AVM. The one good thing is that there was no indication of an AVM in my knee anymore. Again, the swelling and pain have been the same so it was hard to tell. I have a six year old son that I’m trying to keep up with and I’d like to find out a reason why I keep getting AVMs in different locations of my leg and what I can do to help the pain and swelling. Does anyone have any recommendations for a good AVM doctor that specializes in AVMs in extremities. I’m in Florida and I haven’t seen any doctor here with enough knowledge of AVMs (and they are forthcoming with that information). I am willing to travel if needed. Thank you in advance for reading this long post.
Its been a bit since we have seen you. I can’t help you much on the extremity side of things but hopefully some of the folks from the US can chime in with their experiences and Dr. where they have seen success. If you hit the magnifying glass in the top right corner you could run a couple “google” tyope searches and see what threads show up. Sorry I couldn’t be more help!
I am from Canada and did do a few searches prior to my treatment here, and I always think Mayo is a good starting point to look. I was focused on the brain side however, I am sure there are some grest options out there. Take Care, John.
The other thing I understand about extremity AVMs is to get checked out for things like Klippel Trenaunay Syndrome, especially I would say if you’ve got a bit of hypertrophy going on. So I’d look for a centre that talks about KTS and genetic testing.
You definitely seem to have something a little different from most people here going on.
Hope this helps.
Richard
Thanks for the info it is helpful! I appreciate you responding.
Thank you for that info. I just started coming across that in my recent research online. I will ask about it when I see my doctor.
This is the main article we have about these sort of complications
Madere doesn’t hang around here these days but she’s left a useful trail of knowledge.
I started seeing Dr Robert Rosen out of the AVM center in NY at Lenox Hill hospital. I’m from NJ, takes a couple of hours to get there but it’s worth it. I found out about him through this forum and I am thankful I did. My last “specialist” claimed to have the experience to deal with my AVM and he really wasn’t cut out for it. Dr. Rosen confirmed a lot of symptoms that I knew had to do with the AVM but my previous dr said we’re not relevant, he is the AVM guy. Mine is in my left calf, diagnosed at 30, so far I’ve had 2 embos with another one more likely coming judging my last MRI.
This has happened to me so many times! I’m glad you finally found a good fit. Thank you so much for
Giving me this information. I’ve been researching the AVM Center but have been a little apprehensive since I can’t find any reviews or first hand accounts from others. Your account helped me make a decision about where to go. I’m in Florida, but I’d gladly travel to New York for the right doctor. Thank you.
I hope if you don’t see him you find your fit as well! It’s so frustrating not knowing what to do and then your doctors not really knowing either. I wish you the absolute best. I sh*t you not, I called them last month assuming that there was a new symptom with the AVM. I was on the phone with his PA Yeli and she diagnosed that I had a blood clot over the phone. Obviously it was confirmed with imaging, but my mind was blown. My first care team told me I had a cold, when a wound that came from my first embo became infected. By the time I got to another hospital system to get checked I was septic and almost lost my leg. Dr. Rosen and his team have my trust.
Wow, that’s great about Dr. Rosen. I actually have an appointment with him in two weeks. I’m pretty excited to have someone with his expertise look at my leg. Thank you so much for your recommendation.
That’s great, and they work well with out of state insurance which is great too. I’m assuming they see a lot of people out of state given his expertise. His office is down the road from Central Park, which I always take advantage of when I go in to the city to see him.