Good evening everyone. 6 months ago, after having pain in the sole of my foot, having had an MRI performed, I was diagnosed with an arteriovenous malformation on the sole of my left foot. 3 weeks I had the first embolization. they closed 2 vases with terumo azur spirals. I wanted to ask if there was anyone who had had the same trauma as me, whether he was able to resolve it, and if so, how. I wanted to ask you if you know that the AVM deflates after embolization, if so, in what time on average. I’m a little discouraged. Thanks for making this site
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Carlo,
Welcome to AVM survivors! It is great that you found us!
You’ve posted in exactly the right place and I hope some of our Extremity members will see your post and share their experience. Extremity AVMs are different from brain AVMs, so you’ll need the input of people in the Extremity team. (I’ve added you to the team as well 
)
Benvenuto!
Richard
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Hi Carol, I have an AVM in my right forearm since birth & I am now 64, probably one of the older AVM people on here. I have had multiple embolizations on my arm mostly using an alcohol substance. Once they used a gel type substance & hit an artery instead of a vein & that didn’t go so well. My arm has definitely shrunk although it is quite bumpy looking. Originally my arm looked like Popeye’s. I can’t imagine one on the bottom of the foot. Sounds quite painful. I have found that it is hard to find Dr’s in my area that are very knowledgeable about AVM’s. I’m in Oklahoma.
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Hi Carlo
I have an AVM in my foot as well. In 2021 they tried embolisation but this triggered CRPS in my foot (which has now spread to my leg). Because of this my foot has become increasingly swollen.
If you are experiencing weird symptoms or swelling definitely speak to your specialist. Hopefully it is just the AVM, but always worth getting it double checked.
Keeping fingers crossed for you!
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hi writerchick. I am very sorry about this CRPS side effect after embolization. Once some arteries that feed the AVM are closed, is it possible for it to deflate? my avm is long 10cm, thickness 3cm , large 4cm. A surgeon told that the excision is not risolutive and that the best thing is to go step by step. for now I have just asked to vascular surgeons, but one of them advised me to consult an orthopedist. For now I’m wearing a K2 graduated compression sock. I read that it is also a good idea to consult an interventional radiologist. It seems absurd to me to think that there is no solution to this problem. in any case, I have to be patient and I will have to wait for the arteries that have closed to thrombose.
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Honestly not sure. I know some doctors recommend compression socks, but beyond that I don’t know. Was your doctor able to advise? That would be my first point of call.
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Guys,
The other element that I have read previously but which does not stick in my mind is this topic which one of our new members has just brought back to my attention.
Always get some assessment of KTS & PWS if you’re an Extremity AVMer.
Richard
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I have congenital dysmetria of the lower limbs. But this does not mean that it is clear that he has one of these syndromes. I keep reading about people who have had surgical removal done and the problem has been solved… does anyone know anything about it?
https://www.hmpgloballearningnetwork.com/site/podiatry/when-arteriovenous-malformation-arises-foot
I’ve read the article. Obviously it is very foot-specific. You’ve posted in the Extremity area, so other patients with a foot AVM (and hand / arm / leg AVMs) will have received an email about your initial post. Typically people take several days to reply to posts, so don’t expect normal people to reply as promptly as me!
The biggest challenge in all of this (as indicated in the article) is that these are rare malformations with much less medical literature covering them. We definitely have other members here with a foot AVM but how similar their condition will be to yours is difficult to say.
I would encourage you to read around the AVM In Extremities category and see how others have got on, to form your own appreciation of the situation you or your son face. This site dates back a long way, so don’t expect people who were active several years ago to still be active here. Sometimes they are. Sometimes they are not. We changed platform in 2016, so links older than this won’t work and some people never got used to the new platform.
From what I’ve read over the last several years, it seems to me that Extremity AVMs are difficult if not almost impossible to overcome. To my eyes, there seem to be a larger proportion of Extremity AVM patients struggling to get a treatment that is effective. Part of that could be complications from things like Klippel Trenaunay Syndrome, hence my suddenly thinking to link that information to you. Part of it could be to do with the incredible complexity of the foot and ankle or the incredible mobility of the foot: that it is perhaps almost constantly in motion with constant impacts from use. I don’t know but it seems to me to be very difficult (towards impossible) to treat just once.
I hope you do find some travelling companions here.
Very best wishes,
Richard
There is no expectation of having answers quickly. I find this site very useful to be able to join forces and help each other in dealing with these rare pathologies. Below I will report some considerations from the last few months. AVMs of the lower limbs are rare pathologies where there is little medical knowledge about them because there have been few cases. But we must also consider that medicine is making giant steps and there are always new techniques to operate. We must not forget that these are often malformations that we are born with. It is necessary to intervene promptly so as to be able to deal with a situation that is not too extensive. Medicine is not a science but it is a discipline considered humanistic so the experience of the doctor/surgeon who follows matters a lot. Soon, on the advice of my vascular surgeon, I will contact an orthopedist and also an interventional radiologist. If I have a problem solving it, I’ll keep you updated. For now, with the first embolization, the shape of the AVM in my foot has changed slightly and I have no particular pain, it remains very swollen compared to my normal foot. I have a check up in a month and will figure them out. Hugs to all
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I developed CRPS as well in my leg and foot after my embolization. I have one in my left calf and the embolization caused a necrotic wound the size of a baseball that took about 6 months to close. How did they treat your CRPS? They started me with T2, T4 nerve blocks to try and “reset” my nervous system but it just made the top of my leg numb for a couple days. And then I found out I was pregnant and couldn’t continue with any kind of treatment, now they have me on Lyrica for the nerve pain which sort of helps, but not much.
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Hi Jamie
They initially gave me three rounds of IVRA treatment, which did nothing for me. They then tried a lumbar sympathetic block - the first one helped calm down a flare up (a little), but the second did nothing, Since then my CRPS has been getting worse, and my pain consultant (the only one in my area) has left. So I am at kind of a dead end and at a real loss of what to do.
The only other treatment options that I have heard of are ketamine infusions, spinal cord stimulator, dorsal stimulator, or amputation (which is admittedly a last resort and very risky)
updates three months after the first embolization operation (spirals). I spent the three weeks after surgery switching from two crutches to one crutch. One month later, the pain had disappeared, the sole of the foot was still swollen but the shape of the AVM had changed slightly. After three months, perhaps for to the summer’s heat, a stinging pain returned in a lateral position inside the sole, a pain I had never experienced before. I managed to contact Dr. Raul Mattassi, who works in Italy in a hospital that has a specialized center for AVMs in Castellanza, Varese (Umanitas Mater Domini). I will have other diagnostic tests in September 2023 and then they will evaluate what type of surgery to carry out for my specific case. The Doctor seemed very knowledgeable and competent.
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Sounds great! I would really appreciate it if you keep the updates coming. I’m sure other members of the @Extremity group will find it useful (and it would be good if they are able to share some of their own experience).
Very best wishes,
Richard
Good afternoon from Italy. It’s been 5 months since my first embolization using coils. I have zero pain now but my foot remains swollen. It has shrunk slightly but not much. I recently had other specialist visits (echo doppler + magnetic resonance angio with contrast) followed by Dr. R.E. Mattassi, one of the top Italian experts. His diangosis determined that my AVM on the sole of my left foot is intramuscular. He proposed an Electroporation treatment with Bleomycin. He confirmed to me that it has practically zero risks compared to other practices. He also confirmed to me that it is less painful and in many cases curative from the first treatment. Has anyone undergone this type of surgery? thanks a big hug to everyone
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Buon pomeriggio @CarloM really good to get an update!
Bleomycin sclerotherapy is something I’ve read very little about but I think I remember the other day @aimsie639 and @HealthIsWealth both talking about it.
Sclerotherapy is something I’ve read extremity AVM people talking about over a much longer timescale. My assumption is that the objective is to irritate the blood vessels in such a way that they close up. In a similar way to radiotherapy: that they scar up perhaps and close off rather than being like embolization which is to block the flow off using glue or coils.
The impression I get from reading the stories on here is that embolization seems to me less effective in facial or extremity AVMs and I wonder if that is to do with the flexibility required in a limb or face: the constant movement. So if sclerotherapy closes the vessels off without requiring a glue or other agent to be there, then maybe it is more successful. However, I also get the impression that sclerotherapy (without people having been clear in the past if that was done with bleomycin or some other agent) can be really quite painful. However, you’d hope it was worth it to achieve a longer period without pain, wouldn’t you?
I’m definitely keen to know how you get on and build up a bit of a view for others as to what has worked well and what has been less effective.
Very best wishes!
Richard
Hi Carlo!
I’ve had sclerotherapy with bleomycin and STS foam done twice now. My understanding is it irritates the blood vessels into collapsing, but only temporarily. It’s been a year since my last treatment, and I am now waiting for another round of treatments (they usually do 2-3 sessions, 6 weeks apart, size dependent). I’ve heard of some people not needing sclerotherapy again for years at a time, but my understanding is that it is size and location dependent. I can’t get any other form of AVM treatment so I’m unable to compare the pain of sclerotherapy with other types of treatments like embolizations, but it was quite painful. My AVM is under the clavicular head of my pectoralis major, and while they did use some freezing, I still had to feel the needles going under the muscle and felt lots of the treatment. The recovery was also painful, it was impossible to use my arm without pain until about week 5, and then a week later I was doing the whole process over again. Despite this, once I was done a round of treatment I could use my arm without pain for about 8 months. A couple small things with bleomycin: you can’t go in direct sunlight for 72 hours, can’t have any type of abrasion on the skin for 72 hours (ie. shaving, tape, contact sports), and there is a limit to how much you can receive in your lifetime. These may just be specific precautions where I live and may be different for you, but it’s information I get every time I receive treatment.
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