Perspective: Living with a Venous Malformation 

[read time: 4 minutes]

I was born with a venous malformation, sometimes referred to as an arteriovenous malformation, that affects my entire right leg, from pinky toe to bum, culminating mostly in my knee and foot. 

Venous malformations are the overgrowth of malformed veins. They are normally confined to one limb or area of the body, including malformations on the face, in the spine, or in the brain. Vascular malformations also include lymphatic and capillary (aka port wine stains). The malformation grows proportionally with the child. Mine, in particular, is considered a rare disease, will be with me my entire life (and always has been), is not curable, not removable, not infectious, and not a tumour, but causes major complications.

image of a venous or arteriovenous malformation
Diagram showing an artery and vein connected by capillaries and an artery and vein with an arterial venous malformation (AVM) in the connection. source:kidshealth.org.

The veins in my leg overgrew throughout, including into the knee joint, causing, outwardly, a serious stretch of blue and purple varicose veins; and, inwardly, veins everywhere, causing bleeding, swelling, arthritis, lack of motion and movement, weakness, and pain. 

Since my malformation affects my leg, and I need that leg to walk, walking has been problematic since I was able to do so. As I grew, I limped. My knee swelled up all the time. I was in constant pain. I could not run, crouch, kneel, jump on a trampoline, sit crossed-legged, play sports, dance, be “normal”. (Side note: as I grew up, I realized nobody was “normal”.) 

Years of limping and swelling finally culminated in a major surgery I had at 11 years old. Because the malformation was so extensive, not much could be done. I had veins embolized and muscle removed. I was stuck in a hospital bed for a week with a machine manipulating my leg back and forth. Then, my leg was encased in a cast, stick-straight, for months afterwards. 

Then came the rehab. Unfortunately, an 11 year old girl, recently traumatized by the surgical events she was not expecting, is not a good candidate for physiotherapy. I resisted, and that, along with the extent of the malformation, caused my knee to be permanently unable to bend past 90 degrees. 

As if dealing, inwardly, with the disfigurement and limping beforehand was not enough, I got bullied, teased, and left out of school actives afterward. I have suffered from depression ever since. 

For ten years of my life, from 19-29, I was a severe alcoholic, trying to cope. 

Now, I have been sober for almost six years. 

So: what does a day in my life look like, dealing with a venous malformation that affects a major and important limb? Read on. 

My day begins when I wake up in the morning. Already, though, there’s one catch: I have to check the status of my leg. Did something happen overnight that could affect me? This is the issue with having a leg like mine – it acts up whenever it wants to. I can go bed perfectly fine but wake up with swollen veins or phlebitis. My arthritis can worsen overnight (or, sometimes, get better). 

If I have time, I take a bath with a CBD bath bomb. That helps the pain. Sometimes, it’s not enough. I apply a prescription-strength pain cream after. 

Next, no matter the status of my leg, I wear compression socks. No, I’m not 80, I’m 35. Most of the time. These are the same that are also worn by pilots and flight attendants. My physiotherapist recommends wearing them every day – they prevent your legs from becoming sore and tired. 

I wear them because they compress the veins in my leg, encouraging the blood to flow. Anything swollen is tamped down. 

Next comes the knee brace. I have tried SO MANY BRACES, including thousand-dollar custom made ones, only to revert back to my favourite: a knee sleeve from the grocery store. Anything that could potentially press against my knee joint is out of the question – it just aggravates my arthritis. 

Last, I grab my cane (if needed that day) and head out the door. 

Once out for the day, it’s always a challenge getting around. I do not have handicapped parking (yet) so I still park far away from whatever store/ business/ etc I am visiting. 

In the winter, when it has snowed, I rarely leave. It’s too difficult to walk (limp), especially with a cane, in the ice and snow. 

Basically, I do the best I can. I can barely drive any more. Walking is a chore. But I have a toddler who is always on the go, and I need to keep up, so I do. 

Then there are the days where I can’t even leave the house. This occurs when I have phlebitis in my foot and simply cannot walk on swollen, painful pouches of blood that are under the sole. 

It’s days like that when I feel most sorry for myself – and not purely for myself, but for the knowledge that I cannot take my daughter out to do things like other people can do. It breaks my heart when we get invited out to do something – recently, go play in the snow with friends – and I had to say no, because I was having a flare-up and could not walk or drive. 

Luckily, not every day is a bad day. I have more good than bad, usually, and take things as easy as possible in order to not aggravate the pain or veins or arthritis. 

That sums up a basic day: I try to be as careful as possible to avoid any further injury to my already-fragile limb. 

I used to be bullied all throughout my childhood. And teenage years. In fact, I have been even to this day. I used to be embarrassed. I used to be depressed. 

But, as time went on, things became better, mostly owed to the work I’ve done on myself to conjure the confidence I now have. 

However, the biggest change in my relationship to my broken body was finding people online who are just like me. 

Once I stopped resisting social media and, instead, embraced it, I found my tribe. I was totally blown away by the confidence people online had in showing off their vascular malformations. If they can do it, I can too. Their strength and courage have encouraged me to share my story. 

I will have a post soon where I talk about dealing with a venous malformation as a child, not having it properly diagnosed for years (leading to missed intervention), and the pain and incessant bullying I endured. It’s an important story about bullying for anyone who has kids, or was once a kid themselves. (Lol.)

Is there anything you would like to know about that I missed? I encourage any and all questions. It’s funny how after 35 years I’m finally not ashamed any more. 

Published by Erica Black

Erica was born with a rare disease called an arteriovenous malformation in her right leg. She is now an advocate for those with disabilities. She left the corporate world in 2016 to pursue a career as a high school English teacher and began to blog along the way. She has a BA in English Lit and minor in Creative Writing. Her writing has been featured in The Martlet, The Globe and Mail, Heroica, and more. She enjoys cats, reading, and her daughter.

10 thoughts on “Perspective: Living with a Venous Malformation 

  1. Thank you so much for this! I have an AVM to my left leg. I am currently living through a 3 week flare up (and counting!) and cannot explain the comfort your post gave. To hear of someone with similar experiences, which doesn’t usually happen, is amazing. Thank you for writing so openly and honestly about it.

    Liked by 1 person

    1. I am so glad we connected! This is exactly why I wanted to share my story, because there are others out there like us and we don’t get enough recognition. I am so sorry to hear about your flare up. Sometimes mine last for weeks too. I’m here any time you want to chat! 🙂

      Like

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