|Megan Hamilton strokes her 12-year-old daughter KatieRose’s hair in their Aldie kitchen while talking about the preteen’s trigeminal neuralgia, a disease more common to women over 50 that causes excruciating pain in the face. When an attack occurs, KatieRose is unable to move or speak because the pain is so intense. —Times-Mirror Staff Writer/Beverly Denny|
KatieRose Hamilton defines pain differently than many kids her age.
Sure, the 12-year-old will wince when she scratches a knee or bemoan a stomach ache but for KatieRose, the real pain comes in attacks, pain she describes as a stabbing, burning sensation that hits the side of her jaw and leaves her writhing and crying on the ground.
KatieRose has trigeminal neuralgia, colloquially known as the “suicide disease.”
Searching for a diagnosis
Trigeminal neuralgia, often called TN for short, is a relatively rare disorder, affecting fewer than 200,000 people in the United States, primarily striking people age 50 and older.
“To be diagnosed young is very uncommon,” said John Cochran, a neurologist with Inova Fairfax.
Cochran is board certified in neurophysiology and neurology and is the medical director of neuroscience and neurodiagnostics at Inova Fairfax Hospital.
“The prevalence of trigeminal neuralgia, about 4,000 to 5,000 new cases a year,” Cochran said.
Naturally, Megan Hamilton never thought her daughter would fall victim to this disease – especially not so young.
KatieRose first noticed something was wrong in 2012, when playing at a friend's house. She noticed a strange sensation in her face. She went home, and the pain worsened.
“She came in the door crying, which she never does,” said Hamilton.
The pain first struck along her teeth, so after the initial attack, KatieRose and her mother went to a dentist, who found nothing wrong.
This is common, Cochran said.
“Often times people will have a tooth pain and then get teeth pulled and the pain is still there afterward,” Cochran said. “Don't get a lot of work done trying to get rid of it. If it's not clear it's from your teeth, go to a neurologist.”
KatieRose and Hamilton went to a pediatrician, who cautioned that it might be migraines. He advised the family to make note of symptoms as they occurred.
Hamilton made note and searched the symptoms. That's when she found TN online.
After consulting the pediatrician, she was set up with a specialist.
A series of tests were done at Children's Hospital in Washington D.C. and the diagnosis was confirmed: at the young age of 11, KatieRose had trigeminal neuralgia.
Treatment and brain surgery
Hamilton grappled with how best proceed to treat the disease and her daughter's suffering.
She was concerned that the medicine would gradually lose effectiveness as KatieRose developed a tolerance; while most adults who are diagnosed will take medication for 20 years, KatieRose was looking at her entire life. Hamilton, who teaches her children at home, also noticed that it made KatieRose foggy and forgetful, often times unable to work beyond four or five math problems.
After much hand wringing and discussions with specialists, the Hamiltons made the decision to have surgeons operate on KatieRose's brain.
The surgery was to be performed by Ben Carson of Johns Hopkins University. Carson boasts an enviable background; he attended Yale and Harvard and became the director of pediatric neurosurgery at Johns Hopkins at 33, the youngest major division director in Hopkins history. In 2008, he won the Presidential Medal of Freedom, which along with the Congressional Gold Medal, is the highest honor given to civilians. During his long career as a surgeon, he specialized in a variety of diseases and disorders – including trigeminal neuralgia.
The surgery was largely twofold – surgeons were able to explore the nerve issues and treat it through a procedure called microvascular decompression.
During the surgery, Carson discovered KatieRose had a blood vessel that had looped around her trigeminal nerve and grafted itself onto her brain membrane. He was able to detach the vessel and attach a Teflon coating.
After the procedure, KatieRose had a few twinges but largely felt no pain. She was cured.
Until eight months later.
Relapse and awareness
In September, much to the Hamilton's despair, KatieRose relapsed.
After the relapse, KatieRose once again underwent a series of MRIs and tests and is medicated to at least keep the pain to just brief shocks. The Hamiltons were discussing surgery but by 2013, Carson, who is 62, had retired as a surgeon.
The Hamiltons were able to hook up with University of California – Irvine surgeon Mark Linskey and after a consultation with him in California, they are tentatively planning on surgery in January. Until then KatieRose continues to take medication to manage the pain.
But the Hamiltons aren't just sitting around.
“I want people to know what trigeminal neuralgia is so we can find a cure and help more people,” KatieRose said.
In the meanwhile, Hamilton is making and selling jewelery online – turquoise color, for trigeminal neuralgia awareness, to raise money for research. During the trip to see Linskey, Hamilton and KatieRose attended a national conference for trigeminal neuralgia and on Oct. 7, celebrated Trigeminal Neuralgia Awareness Day.
In some ways, KatieRose is like every other middle-schooler – she likes riding her bike and her RipStick and hanging out with her younger sister and friends.
But, with her trigeminal neuralgia warrior princess T-shirt on, KatieRose is a girl on a mission.
|Megan Hamilton of Aldie wears a trigeminal neuralgia ribbon for the disease her 12-year-old daughter KatieRose suffers. --Times-Mirror Staff Photo/Beverly Denny |
|Twelve-year-old KatieRose Hamilton of Aldie shows her panic button and remote alarm she uses during a pain attack from her trigeminal neuralgia --Times-Mirror Staff Photo |
|Successful surgeries can prevent trigeminal neuralgia attacks for about six years. Her mother Megan hopes to take her soon to a reputable doctor in California for another surgery. She is currently taking medication to prevent attacks but it leaves her mind foggy and inhibits academic performance, particularly in math. --Times-Mirror Staff Photo/Beverly Denny
|KatieRose plays with her RipStick on her driveway. --Times-Mirror Staff Photo/Beverly Denny|