Right Foot AVM-I need advice please

Types of Avm's AVM in Extremities
#1

Hi I’m new here, I’m 19 years old
I found this website by accident, while researching AVM’s.
I could really use some help from anyone who’s had a foot AVM

The short version is I’ve had issues with my right foot since I was 10 or 11. After seeing multiple doctors, multiple x-rays, physical therapy, 2 MRI’s, and MRA. My podiatric surgeon has found a 3.7 cm by 6 cm mass in my heel, which they thought was a non cancerous hemangioma. Now after the MRA they said it suggests a high-flow AVM and their not sure if it’s cancerous. I’ve now had two doctors say they are not comfortable doing the surgery (a podiatric surgeon, and an interventional radiologist), and i’m waiting to hear back from one more doctor this week.

And basically the only information I have about AVM’s is from doing my own research, the doctors have told me nothing. Their reasoning being that since they aren’t going to do the surgery they don’t want to tell me something and then it be the opposite, which I understand but it’s really starting to get on my nerves. They won’t even say definitively if it’s an AVM.

My questions are: did anyone else go through this uncertainty/not having any answers/doctors not wanting to touch your chart with a ten foot pole?
And if any of you traveled to another hospital/out of state for your surgery do you have any advice/suggestions?
Because I feel like that’s what i’m going to end up doing

Any tips/advice would appreciated :slight_smile:

Thanks for reading and sorry for the long post

#2

Hi
Welcome! I’m not sure from what country you hail but I would say many of us face this type of push back from inexperienced doctors. It took me over a year and at least 10 doctors before I found someone who would even give me an accurate diagnosis.

If it is vascular there are somethings that help fairly universally. Ice, Elevation, rest and in most cases compression. These are all simple and will not likely cause additional harm.

My VM is in my right calf near the ankle. You need to find an IR who has experience in AVM to evaluate you. In the US I would say most large teaching hospitals are good places to start. There are some experts here in the US that might be good places to get a “second” opinion.

It is likely not cancerous but they can’t know that unless they operate/biopsy it. Many of us get told it might be cancer and it usually turns out it isn’t.
This forum has been quiet lately you might check these facebook groups if you want more responses.
AVM (Arteriovenous Malformation) Awareness
Extremity avms

Good luck!

#3

Welcome to the group. I am so sorry you have an avm on your foot.
I am so glad you found this site. I know I was freaking out when I first was told about my avm which is a DAVF in my head and came across this site by accident.

Dont be shy about venting or asking anything. We are all here to support one another.

My doctor is at Stanford. He is head of neuro radiology and the founder of the dept. His name is Michael Marks. His nurse is Mary. I believe he will review your scans - give them a call and see if they will. Many people are told incorrect information. You really need a doctor who specializes in these avms and Dr Marks see’s people from all over the world. These are rare and you want someone who has lots of practice.
Here is their number Phone: (650) ■■■■■■■■
also Dr Lawton at UCSF is wonderful Phone: (415) ■■■■■■■■ I have seen his work from another person on this site.
Hugs
Angela

#4

Hi,
I have an AVM throughout my left foot that was diagnosed 40 years ago at the age of 10.
I had 2 operations then to remove it and stop the blood flow which were unsuccessful and have suffered from skin breakdown resulting in 5 skin grafts since.
More recently Intervational radiology was explored but it is inoperable.

I wear knee length compression daily, and find that I can be active or have my foot elevated. Sitting with my foot down or standing still, causes swelling and throbbing.
When the AVM is being active I find ice, cold water and elevation helps.

Every AVM is different and so you need to explore what works for you and listen to your body. There will be good times and not so good times.
Definatly find a Doctor who has experience in extremity AVM’s before making any decisions.
Good Luck.

#5

Hi there,

Sorry to hear about your foot. My story is similar. Similar size AVM in the arch of my foot. Took 3 years to diagnose and only when they did an excision with a 5 inch scar as they suspected cancer. Recovery took a while. Following this I had to fly to Toronto to have embolization surgery twice. Recovery was quick and easy. The good news? For the last 21 years i have been playing sports. Bad news, it has returned and grown. Now I have limited mobility again. Compression, elevation, ice and rest makes it easier. I am now in month 4, on doctor 4 but i am finally meeting with a vascular surgeon on July 11.

#6

Hi Rachel,

Sorry for the late response I’ve been super busy with more doctors appointment’s and tests. I’m in the United States, specifically Illinois. Compression and ice I’ve found do help, and it has now I guess you’d say “been confirmed” to be an AVM which was not a surprise. My podiatric surgeon (who isn’t doing my surgery but has basically been coordinating/trying to find a surgeon for me) has now sent my case to Swedish Medical Center/Dr. Yakes to see if he or anyone else in their staff would feel comfortable/be willing to do my surgery. He should have an answer either today or tomorrow for whether or not my surgery will be done there, which is awesome! :slight_smile: I really hope it is. I will definitely check out the facebook group :slight_smile: thank you!

#7

Hi Angela :slight_smile:

Sorry about the late reply, I’ve had loads of doctors appointment’s
Yeah I was definitely freaking out when I found this website lol well I was sort of freaking out the entire time I was dealing with this, I think I pretty much came to the conclusion that I could be crazy, from all the people who told me there was no reason I should be in pain and that I was faking it to get attention. So needless to say this website has been amazing, just reading posts when i’m having a bad day, it’s awesome to know there’s a light at the end of the tunnel. Thank you for their phone numbers/info :slight_smile: I will definitely hold onto them :slight_smile: so far my podiatric surgeon has sent my case to Swedish Medical Center and he should be hearing back from them either today or tomorrow about whether or not one of the dr.'s there will be doing my surgery, and if they say no then on to the next big hospital! Lol we literally have a list :smiley:
Thanks again!

1 Like
#8

Sorry to hear you had to go through all that
Yes, I definitely plan on having a doctor/surgeon who is experienced with AVM’s, before I found this website I was just trying to find someone locally but now I don’t care how far I have to drive, as long as the person has a lot of experience :slight_smile:
Thanks!

#9

Wow, that’s awesome about the 21 years of, I guess being rid of it? Lol sorry I didn’t really know how to word that :smiley: I feel like i’m talking about a person. That sucks though that it came back, I know I had read on some post’s that AVM’s don’t come back if their removed completely, though it seems for some people they come back either way. It’s confusing. I hope the meeting with the vascular surgeon goes well! Good luck! :slight_smile:

#10

Hi. Its great to have you here. I dont remember if I’ve welcomed you to the site in a different thread, so WELCOME!

I don’t have a hand or foot AVM but my reading of other people’s stories is that extremity AVMs seem very difficult to completely quash, so getting treatment (and the right treatment for your case) will be good but I do think there is a risk it will recur. Be positive about getting to talk to the right doctors but also have in mind you might be in for a long journey. Im no medic and I have no direct experience but if it helps you to have a more modest expectation of the journey, then I mean to help you in that way.

Very best wishes! I hope others with extremity AVMs will help you all along the way (and the rest of us are here to support as best we can, too)!

Regards,

Richard

#11

Welcome KoalaLove. Sorry you’re a member of the AVM club, but we’re glad that you found us.

An idea for you: use the search feature near your avatar, and key in “foot avm” and see what comes up. My guess is that you aren’t the first person here to post about one.

Don’t hesitate to join in on old conversations: as soon as you do that, everyone on the thread gets an email notification of your post. It’s a great way to get the ball back into play again.

Hope this is helpful, and all the best to you.

Seenie

#12

Hi Richard :slight_smile:

You actually did welcome me on my other post, but thanks again for the hello! :smiley:

#13

Hi Seenie,

Yes that is helpful :slight_smile:
I’ve been doing a lot of searching/going through old posts
this site has been a lifesaver :smiley:
Thanks!

1 Like
#14

That’s great to here, KoalaLove. Make sure that you shout out if you need help. As you can see we try to be responsive.
Seenie

#15

Hi, I am a 36 year old female from NY that has a left foot AVM. I started having issues with this around the age of about 18 and it has just gotten worse since then. My fear is as I get older my issues will get much worse! I have have many mri and mras and biopsies to determine what this was ! After being diagnosed of course I went to NYC since we have some of the best doctors and hospitals! I have been being treated by Dr. Rosen who is a very well known international vascular radiologist. He has been great but my AVM is just very aggressive! I have had 8 angiograms/embolization procedures with him and with each one I get relief for about 5-6 months and then I start to feel the stabbing throbbing stinging pain again, which then causes the skin to ulcerate and that alone tKes months and months to heal! I find that wet to dry dressing help heal the ulcer the best! My AVM is on my left foot as I mentioned and is right on my ankle area and extends to under my heel and is about the size of a softball! The pain sucks and I see pain management for it, now it does help but the pain is so severe that I cannot function without the meds. I am now getting state disability as I was out of work so much due to my procedures and pain. This condition limits me from having any time of social life which really puts a downer on things. If anyone needs a support person or help please feel free to reach out!