Brain AVM Rupture Warning Signs

Arteriovenous malformation (AVM) is a rare, potentially life-threatening condition that can cause blood vessels to rupture. Many people with an unruptured AVM don’t experience any symptoms. For those who do, symptoms of AVM may begin at any time. In the brain, an AVM can even be fatal.

Nirav J. Patel, MD, a neurosurgeon with the Mass General Brigham Neuroscience Institute, describes brain AVM symptoms and rupture warning signs. Knowing these things can help you seek timely and lifesaving care. The right treatment for AVM can result in a cure for many, but sometimes patients receive misinformation in their care journey.

 “These are complex, and not every center will provide the same answer, or have the same experience,” he explains. “Patients should feel empowered to seek second opinions.”

What is an AVM?

An AVM is a miswiring of blood vessels or, as Dr. Patel describes it, “a plumbing problem.”

Normally, when the heart pumps blood to the organs, it travels through an artery, into a network of small blood vessels called capillaries that surround the organs. Through these capillaries, blood flow slows down before it travels back to the heart through a vein. In an AVM, an artery is directly connected to a vein, skipping capillaries altogether.

“Everywhere else in the body works perfectly well — artery, capillary, vein. In this particular instance, one out of a billion, let's say, it went from an artery straight into a vein,” says Dr. Patel.

This results in high-pressure blood flowing directly into a vein. Over time, the blood vessels stretch and weaken, which can lead to a rupture.

No one knows what causes an AVM to form, though in rare cases it may be caused by a genetic mutation. Most AVMs develop before or shortly after birth, though they can develop in adults.

While AVMs can occur anywhere in the body, they are most dangerous in the brain and spinal cord, where rupture can lead to serious complications, including hemorrhagic stroke.

Symptoms of AVM

Many people with an unruptured AVM don’t experience any symptoms. For those who do, symptoms of AVM may begin at any time. Some people discover an AVM while seeking medical attention for head injury, chronic headaches, which can feel like migraines or throbbing, or seizures.

Between 15% and 40% of people with brain AVM experience seizures according to NORD, the National Organization for Rare Diseases. Some AVMs can bleed, leading to stroke symptoms such as numbness or weakness in the face, arm, or leg.

When they bleed, some AVMs are located in parts of the brain that can also cause neurological symptoms, such as:

• Cognitive problems: Symptoms such as challenges with concentration, memory loss, confusion, and difficulty learning can be a result of an AVM.
• Sensory problems: In some cases, pain, dizziness, vision problems, and hallucinations can occur in people with AVM.
• Movement problems: People with AVM may experience weakness, paralysis, or loss of coordination.
• Speech problems: AVMs can impact the brain’s language centers, making it difficult to speak or understand others.

AVM rupture

When an AVM ruptures, people often experience a profound headache, often described as a “thunderclap” headache. “That headache is what we call the worst headache of life,” says Dr. Patel. “It's not something that people have ever experienced before. It is significantly different than a migraine or tension headache.”

In addition to a headache, symptoms of AVM rupture include vomiting and loss of consciousness.

If you have a severe, sudden-onset headache or these other symptoms, go to the emergency room for immediate evaluation.

AVM treatment

Once diagnosed, your doctor discusses your AVM treatment options. Every person and AVM are different, and the AVM treatment you choose depends on many factors, such as the location of the AVM, the severity of your symptoms, your medical history, and your preferences.

“There's nuance and discussion with each patient,” says Dr. Patel. “We will definitely help you. We pick the treatment that is safest, and many times that’s a cure.”

Dr. Patel sees many people seeking a second opinion who receive an encouraging prognosis.

“I see a lot of patients from around the country, and some of the hardest parts of speaking to them is unwinding the negative, wrong information they've been given over the years,” he shares.

“We sit there and I say, ‘You're going to hear something from me that you've never heard… I'm going to tell you this is curable; we can fix it.’ That can be jarring, but our goal is to provide information and then fit management to the individual.”