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AVM Survivors Network

Ever been hit in the AVM?

I’ve had my heel kicked, stomped on, etc. numerous times over the last 11 years, and it SUCKS so much, every time.
I know that it’s just naturally going to happen because it’s a heel and it’s right there. It is inevitable, and accidents happen. Doesn’t change the fact that it hurts insanely bad.
Does this ever happen to anyone else with an extremity AVM? My parents always say “you must be overreacting, I’m sure it’s hurt worse than that before”
And. It’s literally rupturing my veins. Can anyone relate?

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Yes! My AVM is in the left foot, so ‘walking’ means pressing on it repeatedly every time I take a step with my left foot. On a good day, I’m only slightly limping and it’s bad for knees, the lower back and even for my ‘good foot’.

For me, the equivalent to your heel being kicked is accidentally stepping on a stone or the edge of stairs, and the thing digs right in the middle of the swelling :sob:

I’ve never experienced rupture, but people here often talk about it. Wonder if it will happen to me one day, or if it depends on the type of AVM!?

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Hi Emma,

Sorry to hear this is an often experience for you. I can relate on a somewhat similar level. My AVM is on my face/chin area and I have to be careful about any potential hard hitting contact with it. When I was about 9 or 10 years old my doctor took me out of all contact sports after I was hit in the face with a dodge ball and landed myself in the hospital for a month. Since then it’s been something I’ve been more conscious of and it makes me nervous sometimes even when I do decide to participate in sports such as soccer or basketball; but there’s tons of other times where I get randomly hit in the face too.

It’s frustrating and annoying at times, and sometimes I get sad that it’s affected my life (e.g. by not being able to participate in sports I love, or having to be extra cautious). I imagine its also frustrating for you because your AVM is on your heel and that plays a part in day to day activities.

I’m here if you ever need to talk! All the best,
-Rachel

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Mine is in my left forearm and elbow and every once in awhile, somebody just tries to grab my hand or elbow. It’s the worst.

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@katsli55 I have an AVM in my left foot as well, and I thought I was the only one who suffered when doing something as small as stepping on a rock on the ground or uneven terrain at the beach. I DREAD going barefoot, and have adapted by walking with a limp… which of course doesn’t help anything either. Living your life afraid to step is a mental and physical challenge, and I wouldn’t wish it on anyone. I am glad you have not ruptured, as it is quite painful! I had something similar happen during one of my surgeries. Luckily, my doctor was quick and had things under control nearly immediately. Truly terrifying, and so happy I was asleep for that! Do you still have a fair amount of pain with your AVM? What interventions have you found to help?

@EmmaMargret ABSOLUTELY! My family and friends quite often use the “you must be overreacting” line when I step, move, or land in a way that aggravates my AVM (on the bottom of my left foot). After now 6 procedures, the swelling has finally gone down and I have noticed the impact that’s made with my AVM and being able to even touch the spot. My main AVM is in my arch, but through the previous surgeries I have acquired one in my heel now as well. And I must say, it hurts in a whole new way! Even from arch to heel the pain is different, aggravated by different things, and all around a whole new situation. It is SO stressful! You are not alone though, and I can absolutely relate to that pain that just takes your breath away. I hope you find some quick acting pain interventions, as those are the only things keeping me sane walking throughout the day! Best of luck and I am always around if you need to vent! :purple_heart:

It is not a joke, the pain you feel when getting hit or even gently nudged in my AVM could send me through the roof. I had a huge one that sat right on the main nerve in my right calf. I had part of the AVM safely removed, and they say it will grow back in time since part of it still exists. But as for the pain i remember it very well and it is very real. What people don’t understand is that they hurt most of the time anyway, or at least mine did. So when it gets bumped or hit it can be debilitating. There were times i would get hit in mine, and then not be able to walk for two days.

@HopeErin I had never interacted with someone with an AVM in the left foot, until I received your post! I can totally relate to everything you wrote here. I don’t go barefoot, especially on a sandy beach. I don’t even wear flipflops, as they feel too soft and not protective enough. The pain comes and goes, and gets worse in summer or hot climate, or whenever my body is warm.The several embolisation sessions I had didn’t make much difference, so I’m taking a break from any interventions. I’m sorry to hear you’ve experienced rupture–I lack knowledge re: what rupture is about and why some people experience it. Is it related to whether your AVM is more venous or arterial?

@katsli55 It’s crazy how much time I spent when I was younger convinced I was the only one who “had it this bad” and the LEFT FOOT OF ALL PLACES? I stick to the same 3-4 pairs of shoes I know do not aggravate my foot, and needless to say my fashion has suffered as a result :rofl: We can compare crazy life hacks anytime too, I’d love to hear how you take on life with your AVM too. Do you feel like having it elevated helps? (I often find myself taking my foot out of a “dependent” blood flow position and it helps) And I’m not sure what makes one rupture. I had tried to bring this question up with my surgeon and he himself couldn’t quite give me a clear answer. They’re so tricky I don’t think anyone knows for sure. I also understand the break from interventions. I went about 8 years with no doctors. I gave up, and the amount of “doctoring” I’d had in a years time was more than I’d cared to have in a lifetime. Sometimes a break does the body good. I do hope it helps, but if you ever need anything or want to chat you know where to find me!

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@HopeErin I totally know how you feel re: shoes and fashion! Sad that I can never wear heels. Even good sneakers are hard to find–these days most come with arch support which would aggravate the pain. The first thing I do in a shoe shop is to slip my hand in and check if the insole is flat enough–usually I have one or two choices only :unamused: I then buy separate arch support for my right shoe, because I have flat feet and walking gets painful even without AVM :frowning_face:

Yes, elevating the foot helps often. I’ve tried ice packs, too. I can look ridiculous when I work at home, with my left foot in a soft cooler bag AND on the desktop :joy_cat:

One of the biggest problems for me is the tight muscle on the side of the left shin. I’m semi-permanently trying to lift my left foot slightly off the floor because of the pain. I also walk by placing weight on the outside of the foot. This means the muscle on the outside of the shin bone is always flexed and short. It’s become rock hard and I want to stretch it more using a roller or a ball, but I find it really hard to do! Do you get that, or do you not have this problem?

@katsli55 I think you just described my life :joy: But, I actually find relief from things like wedges vs those darn arched tennis shoes. I also know exactly what you mean with the tightness, walking on the outside of your foot, and looking like a downright goon at home! Except I usually find heat helps me most. I wonder why that differs?? For the shin pain though I went to physical therapy when I was younger. She had recommended kinesio tape and just a little self massage. I have found it to be successful (as much as it really can be) and the tape comes in cool colors… lol. :sweat_smile: I tend to wear it when I go out. Looks cool and people are less likely to ask why I’m limping. (Win Win!) Do you often get asked why you limp? How do you handle it? When I was a kid I had no problem diving into my AVM world and sharing, but I feel like as I age I find it harder to explain and am getting worn out. Can’t I just hand out a business card that says “I HAVE AN AVM.” ? :rofl::sweat_smile: Or am I the only one that gets a bit tired of everyone assuming I have a broken foot or ankle? :rofl:

My VM is on my left but cheek. And when I was a teenager, I had a particularly gorgeous bum in slim jeans. Still do by the way :joy: You can imagine the problem. The boys in my class would regularly try to smack me on the bum. And once I got such a big hit that I had to go to the hospital because veins burst and everything. I completely relate. It hurts like hell!!!

Leah Mi, good to hear from my vm butt friend !
To add to the pain discussion here, I feel your pain, both physical and emotional. I am 64 And haVe a lifelong challenge with my VM in groin/buttock. What works for me is is mild compression. I wear bike shorts from Spanx
Perhaps a foot compression garment for sprained ankles wd help those dealing with foot vms. I. Do not
Know @ arterial feeders. If the toes are blue or cold to touch then circulation is impaired.