New surgery is removing dangerous deformities

An AVM is a malformation in the face that happens when there's an abnormal connection between veins and arteries. Now, some patients are rolling the dice on a risky procedure.

Just a few months ago, Susan Adams had an arteriovenous malformation, or AVM growing on her face. The slightest bump could cause massive bleeding.

"It would rupture where it would actually project three or four feet away from you," said Adams

She worried that a bad bleed could kill her. After six surgeries failed to remove the AVM, Susan lost hope.

"When doctors tell you there's nothing they can do for you, it does get difficult," she said.

Then, surgeons at Johns Hopkins tried a risky, but potentially life-saving procedure.

"To be honest, I was quite scared when I saw it," said Amir Dorafshar, MD, Plastic and Reconstructive Surgeon at Johns Hopkins

Dr. Monica Pearl used a needle to puncture Susan's lip under ultrasound guidance. She then cut off the AVM’s blood supply and glued it shut.

"But we preserved her normal tissue, so that she could heal from her surgery," said Dr. Pearl, Assistant Professor at the Division of Interventional Neuroradiology

Doctor Dorafshar then carefully cut out the AVM and reconstructed her face.

Now, Susan can be as active as she wants.

"Not only did they save my life, but they changed my quality of life, so I'm happy, very thankful," she said.

AVM’s affect about 250,000 people in the United States. The standard way to treat them is through a catheter inserted in the groin. Doctors originally told Susan her AVM was untreatable because of previous surgeries that failed to fix the problem. If Susan's AVM was not removed, it could have led to fatal blood loss.

BACKGROUND: Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body. Most people with neurological AVMs experience few, if any, significant symptoms. The malformations tend to be discovered only incidentally, usually either at autopsy or during treatment for an unrelated disorder. But for about 12 percent of the affected population (about 36,000 of the estimated 300,000 Americans with AVMs), these abnormalities cause symptoms that vary greatly in severity. For a small fraction of the individuals within this group, such symptoms are severe enough to become debilitating or even life-threatening. Each year about one percent of those with AVMs will die as a direct result of the AVM. (Source: NINDS)

TYPES/SIGNS: Seizures and headaches are the most generalized symptoms of AVMs, but no particular type of seizure or headache pattern has been identified. Seizures can be partial or total, involving a loss of control over movement, convulsions, or a change in a person's level of consciousness. Headaches can vary greatly in frequency, duration, and intensity, sometimes becoming as severe as migraines. Sometimes a headache consistently affecting one side of the head may be closely linked to the site of an AVM. More frequently, however, the location of the pain is not specific to the lesion and may encompass most of the head. (Source: MedicineNet)

TREATMENT: Medication can often alleviate general symptoms such as headache, back pain, and seizures caused by AVMs and other vascular lesions. However, the definitive treatment for AVMs is either surgery or focused irradiation therapy. The decision to perform surgery on any individual with an AVM requires a careful consideration of possible benefits versus risks. (Source: NINDS)

NEW TECHNOLOGY: A new minimally invasive procedure was designed to achieve separation between vessels, thereby decreasing the blood flow to the AVM clot. Guided by an angiogram, interventional neuroradiologists Philippe Gailloud and Monica Pearl injected glue into the AVM to decrease the blood flow to the clot.

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David March, MHA
Senior Media Relations Representative/Assistant Director
Johns Hopkins Medicine
(410) 955-1534

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