My name is Kevin and I have 3 AVMs in the bottom/side of my right foot. My symptoms started when I was 19 years old. The plantar aspect of my foot was red and swollen with no pain since I was a teenager. For years my doctors said it was plantar fasciitis. When the pain got really bad, my doctor performed a plantar release surgery which caused more harm than good. At this time I only had 1 AVM. As of today I have 3 AVMs. The third one popped up 6 months after my last embolization. I’ve had two embolization’s which maybe helped for about six months and then the pain came right back. I’m in constant pain and I’m worried that it will only get worse. Currently I lift weights 4-5 times a week as long as I’m seated or take pressure off my right foot. My current interventional radiologist said this was okay to do so as long as I don’t lift with the affected foot. Is there anyone out there going through this? It’s very tough working on my feet with this condition and raising my 2 year old daughter.
Welcome to our crew here! You’ll see a lot of our welcome say its great you joined us, too bad you had a reason! I was a brain AVM guy and had gamma knife after a bleed so very different than your situation. Hopefully some folks will chime in with their experiences, we do have a lot of varied experience here in all types of AVMs. Take Care, John.
Welcome Kevin!
I’ve added you to the @Extremity AVM team. I know there are others here with AVMs in their foot or leg who are going through very much the same trouble.
There is a special category on our main page under Types Of AVM for people with an AVM in their extremities. You’ll find friends there and I hope some will reply to your post.
Welcome!
Richard
Hi Kevin, welcome to the community and sorry to hear of your struggles. We have a very similar case - I also have AVM’s in my right foot, mine are along the tarsal tunnel and in the plantar region as well. I also have constant pain and worry about what the future will hold for me. I am impressed that you are able to work on your feet, I had to pick an office-based career because I can’t stand for more than a few minutes at a time without serious pain. Kudos to you for raising your daughter, as well.
Extremity AVM’s seem to be really tough to treat because of the anatomy they tend to involve. Mine is “intimately associated” with the tibial nerve, for example, so any intervention is really complicated. I haven’t had much luck with sclero or embo’s, and have had a couple attempted resections - which I would recommend strongly against (that’s how my one turned to multiple, they tend to grow back and grow back angrier). I wish I had more positive news to share with you, but it’s a tough road. Therapy has helped some, with coming to terms with this and with pain coping skills. Short of that, the traditional RICE advice seems to help the most. Wishing you all the best.
I didn’t get it Carly, so you recommend resection instead of ebolisation/ sclerotherapy or the opposite ?
Hi Kevin, I’ve an high flow or AVM in my left foot sole. My left foot always been bigger the the other one, but i got no symptoms since two years ago (29 years). One year ago i had an embolistation with coils, and the pain was gone but the foot sole remains swollen, then i met a specialized professor here in Italy Raul Mattassi, and he suggest to try the electroporation technique combined with bleomicyn. Now i have to wait 3 month to see if this sclerosant agent worked well. Remember that each AVM behave in different ways than the one of the others… stay strong, and try find some master surgeon that know this kind of pathologies. Keep in touch
The opposite. From my experience (and general wisdom, as far as I can tell from other’s experiences that they’ve shared) these don’t seem to react well to attempts to cut them out.
I have to agree. The impression I get is that extremity AVMs are perhaps the least treatable and I honestly wonder whether it is in places that are just soooo mobile as a foot or a hand that it is more difficult. It is very interesting to watch how you @CarloM get on with the electroporation and bleomycin because I’ve heard of bleomycin sclerotherapy but I’ve not read about electroporation, so I’m hoping this is a game changer. It needs to be. It really does.
Very best wishes
Richard
Seconded - I’ve never heard of electroporation, and I just got back from the Mayo Clinic a month ago where they laid out all of their available treatment options. I hope you’ll keep us updated on your progress, @CarloM because I am very curious (and hopeful!) that maybe there’s another tool out there to work with that can offer some relief.
Hi guys, i share with you few articles about AVM high flow in the foot sole with successful treatment:
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https://www.hmpgloballearningnetwork.com/site/podiatry/when-arteriovenous-malformation-arises-foot
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Giulio, nato con una malformazione: anni di calvario, curato al Rizzoli con l'angio-suite
The treatment of the first one was embolization with alcohol .
The others are resection, but it seem that vessels must been cauterized before the cut, and yes its a tough surgery because in the foot sole the AVM is intramuscular so the vein and the arteries are mixed with tissues, muscles and nerve.
The 4th one its from a very good hospital near Bologna, they have performed an embolization with coils and bleomycin electro-sclerotherapy, but its not located in the foot sole but in the gluteus.
Just a reminder each case are unique and also the treatment case by case.
Hugs
I appreciate all of you. I’m sorry about my late response. Yeah it’s been very difficult. I’m still able to walk for now but it’s getting more difficult. I use a scooter at work to take the pressure off. I just hit 30 and it seems to be getting worse and feels way more swollen while I walk. Does anyone have a recommendation for a certain shoe that takes the pressure off and a certain compression sock? Recently I feel like there hasn’t been any relief. If there’s something you guys do in particular I would be very happy to know. Thanks again.
The Italian case using electro pulsation on the venous side sounds very interesting. The key with all of these techniques is the permanent doing away with the whole thing. One of the other articles described AVMs as very much inclined to recur and this is the big issue.
Let us hope that Giulio continues much beyond the studied two years to have escaped his foot AVM.
I also note a reference to Dr Wayne Yakes, an AVM specialist whose use of ethanol embolization (I think) has been regularly mentioned by patients in this forum.
@Kevin_michael1995 regarding how to cope with it in the meanwhile, I noted in one of the articles (possibly no 3, which seemed horrific to me and I didn’t notice how good a review post op was done) but an appropriate cushion insole was used for the patient to have as good a gait as possible. I can say my wife has trouble with other things in her feet and she has given up wearing “normal” shoes: rather she has adopted walking boots as her preferred footwear, with an orthotic insole tailored to her needs. She is not an AVM patient but I read in one of the articles quoted above a similar adoption of insoles. If you can find shoes or boots that you can remove the usual insole and have a suitable orthotic made to adapt to your foot, that may be a practical thing to try.
Hi Kevin my AVM is compressible, so when I stand up it become less hard. btw I now use new balance 880, and i have K2 compression socks when it hurts me.
Yes, electroporation or BEST (bleomycin electro sclero therapy) is a new technique, lets see if in my case after 3 months of waiting its been working. On the other hand those are few articles that mention specific surgery of resection, we should involve vascular surgeon, orthopedic surgeon and also a radiologo interventista (I don’t know the word in English ).
I believe that must be a solution, two of these articles speak about specific resection for the AVM , and it won’t come back because of the cauterisation of the vein.
I’d encourage you to have a read around here for all of the extremity AVM stories because I hope it works for you. The impression I get from reading around is that often the relief is disappointingly temporary. Something that lasts many years is what you’re after.
My doctor was an interventional radiologist. I think that’s the term you’re looking for in English.
Good luck!! Seriously.
Richard