Greta Tucker (then 14) suffered from terrible headaches for much of 2022.
The now 15-year old from Billerica in Massachusetts tells TODAY.com that the headaches were affecting her schoolwork and sports. “It was much more intense than a typical headache. It was a constant headache. I’d get it when I went to bed and when I woke up. “Advil, Tylenol…that didn’t work.”
Mom Sue Tucker was worried and they went to the doctor. Greta was diagnosed with an arteriovenous (AVM) malformation, a jumbled of veins nestled within her brain. These congenitally misformed veins are deadly if they rupture.
Sue Tucker told TODAY.com that there was no brain bleeding. “I was a nervous wreck, because I didn’t think she would have an aneurysm any minute.”
Headaches lead to accidental discovery
Sue Tucker was initially unsure if she had been worrying too much over Greta’s migraines. The teenager had just started a new drug, and severe headaches or continued headaches are rare side effects. The headaches affected Greta’s entire life. She played volleyball, softball, and ice hockey. But the pain often kept her on the sidelines.
Greta: “I had difficulty sleeping.” “I had no choice but to miss out on sports and other events. It was a terrible experience to watch others play and people take my place.”
Sue Tucker took Greta Greta to a doctor.
She says, “(The pediatrician told us) that we should contact a neurologist.” “I brought her with me to (Boston Children’s Hospital), and we saw a doctor. This person ordered an MRI.”
The doctors determined that the medication caused the headaches. However, the MRI revealed an “incidental” finding: the AVM.
Sue Tucker says, “I cried quite a bit.” “We were lucky in so many ways that she got the headaches. It’s not good, obviously. But we wouldn’t have known she had an AVM.”
Sue Tucker and her spouse were worried, so they stopped Greta playing sports until she understood what an AVM was. Greta had an angiogram performed to help doctors determine where the AVM was located in the brain.
Sue Tucker explains that “you hope that it is closer to the outer, or outer brain. But hers was literally right next to her inner brain in the middle part. This was near her mobility and speech function.” “There was a very high risk that if they did anything surgically, she would not be able to talk or paralyzed,” Sue Tucker explains.
AVMs
Dr. Edward Smith, Greta’s doctor, explains that an AVM occurs when blood vessel formation in the brain is incorrect in developing babies, and blood then flows through them in an abnormal way. Experts estimate that they affect one in 10,000 people. However, it could be higher, says Dr. Edward Smith.
AVMs are often not discovered by people who have them. Greta found out about her AVM through an MRI. AVMs can rupture without the person even knowing.
“They have blood flowing through them in a manner that isn’t usual and that puts wear and tears on them, similar to driving on a bad tyre,” Smith, vice-chair of the department and codirector of the Cerebrovascular Surgery and Interventions Centre at Boston Children’s Hospital tells TODAY.com. “The scary thing about AVMs, is that you can go about your normal life and nothing will happen. If they bleed, that’s when they become very, very frightening.
AVMs don’t have many symptoms that can help people detect them before they rupture.
AVMs may cause symptoms such as:
- Headache with vomiting and neurological symptoms
- Seizure
- Headache that wakes you up in the morning
Smith emphasizes that most headaches do not indicate a neurological condition.
Smith says that between half and 80% of people have headaches at least one time a month. “People should be concerned about scary headaches.” If you or your child are in pain, then (talk to a physician).
He notes that between 12 and 25% of AVMs that bleed are fatal.
He says, “They are one of the scariest things we see in neurosurgery and medicine.” “Greta was lucky that it was discovered before it ruptured.”
This meant that doctors were able to “proactively” treat the AVM before Greta had any problems. Although doctors have several options for treating AVMs, the most common is surgery, which Smith compares to “disarming bombs.” But brain surgery is not an option for patients like Greta. She had stereotactic radiation surgery, which is “a fancy word for really really… targeted radiation.”
Smith explains that “one (radiation beam) is very low intensity. As it zaps the healthy brain in order to reach the AVM, the damage will not be as severe as if all 10 or 20, or hundreds, of beams were to converge at the same time.”
The AVMs “shrivel up” as a result of the focused radiation, so that no blood can flow through them and bleeding is eliminated. It can take two to three years for the AVM to be completely inactive.
Smith says that there is a risk of bleeding between the time you zap it and the time the skin finally shrinks.
He adds that research has shown that not much triggers them to bleed. “They bleed because of wear and tear, which is time-dependent, and not as much if you bang on your head or lift heavy weights.”
Smith wants to assure people that AVMs are not as common as they sound.
“These are extremely rare,” he says. “People shouldn’t panic if they get a headache.”
Back in the Game
Greta was fitted with a metal mesh face mask that was placed on her head. She was then secured to a table so the radiation would be directed at the AVM. The procedure took 15 minutes and was completed.
Sue Tucker said, “She was amazing throughout the whole thing.” “She did what it took.” She never complained.
Greta was not afraid during her treatment. She did cry a little when she learned that she had AVM.
“I felt completely safe,” she says. “If there was a problem, the doctors would be right there.”
Greta is back playing sports after undergoing stereotactic radiation therapy.
“Hockey is my main passion.” She says, “I did pretty well this season.” “I’m just getting out of softball and I had a pretty successful season too.”
Greta’s family is grateful that she was diagnosed with AVM before it caused any harm.
She says, “We were lucky that it was an accidental discovery.” “I am very grateful for that.”
She encourages parents to be advocates for their children if they notice something is wrong, especially if it seems out of the ordinary.
Sue Tucker advises, “Don’t hesitate to visit the doctor.” “If it turns to be nothing, that’s awesome.”
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