It was an ordinary day in 2006. At the time, Ben Munoz was a healthy 29 year-old software engineer who was getting his MBA. Suddenly, Ben suffered a stroke. 

They later found out that it was caused by a rare disease called arteriovenous malformation or AVM which, in his case, was located in the brain.

What is arteriovenous malformation?

For an unknown reason, our veins and arteries can form in a tangle called AVM where a capillary would naturally be.  

Normally, the blood flows from the heart through arteries and then goes to the capillaries which then bring the oxygenated blood to the tissues before passing through the veins to go back to the heart. 

When there is an AVM, the blood is transferred directly from the arteries to the veins. This blood, however, is high pressure and the continuous exposure to this high pressure blood eventually causes the vein to rupture. 

The formation of an AVM–or even several AVMs–usually starts when the fetus is still developing inside the womb or immediately after birth. It can develop in any part of the body, such as the leg, shoulder, face, brain and spine.

Possible symptoms

An AVM may show no symptoms at all and patients are usually not aware they have an AVM until it shows up in a scan when they visit the hospital for another reason. Others find out about their AVM only when it bleeds or ruptures which, if in the brain, usually causes an extremely severe headache, confusion, and seizures, among others.

In cases when the AVM causes symptoms even without bleeding, the symptoms will depend on where it is located. 

For brain AVMs, symptoms may include dizziness, hearing and vision problems, weakness, numbness or migraine-like symptoms. If located in other parts of the body, patients may notice some coloration or swelling which feels a bit warmer to touch and is painful.

Diagnosis and treatment

AVMs may be diagnosed using imaging tests such as CT scans and MRI after performing a physical examination. 

Depending on the location, the patient may undergo a surgery to remove, or close off, the AVM.

Ben’s recovery and founding Ben’s Friends

In Ben’s case, he had to undergo an emergency surgery after the stroke and stay in the ICU for a while. While recovering and going through further treatment, he had thousands of questions in his mind. 

How does one recover from an AVM? Where can he find the answers when he has never heard of AVM before, much less know anyone who has gone through what he just did. He felt scared and lonely. 

This prompted him to create a web site called AVMSurvivors.org that would enable him and anyone who has been affected by an AVM to get in touch with others like them.     

His good friend Scott Orn later joined Ben and they created online communities for other rare diseases and they eventually founded Ben’s Friends Patient Support Communities.

Spread awareness and join AVM Survivors Network

Help spread awareness about arteriovenous malformations. And if you or anyone you know is affected by this rare disease, we invite you to join AVM Survivors Network and find people who truly understand what you’re going through. 

We have members with all sorts of AVMs and we welcome patients, carers, friends and family of those with AVMs, arteriovenous fistulae, venous malformations or cerebral cavernous malformations from all around the world.