Many know the condition simply as "phantom tumor". If not treated, damage can be extensive.
There is concern that cases in children may be increasing and obesity could be to blame.
"You look so pretty in your dress."
Taking pictures of her model pup is Lauren Ashley's passion, but the teen fights through daily pain to perform her photo shoots.
"She's had a headache since she was five," said Diane Ashley, Lauren's mother.
Ashley takes 22 pills a day. She has had more than 30 surgeries and has been in and out of the hospital dozens of times. It's a lot for a 16-year-old to deal with.
"I had to be admitted because I had suicidal thoughts and everything was just really bad," said Lauren.
Ashley has a condition known as pseudotumor cerebri.
It happens when there is too much pressure inside the skull. The result: severe headaches, dizziness, and neck and back pain.
"The general consensus is that we're either seeing more children with pseudotumor or that we've we've gotten better at recognizing it," said Dr. E. Steve Roach, a pediatric neurologist at Nationwide Children's Hospital.
Nationwide Children's Hospital in Columbus, Ohio, has a clinic dedicated to treating this disorder in children.
It is called "pseudotumor" because it is often mistaken for a brain tumor, but scans show no tumors.
The exact cause is unknown, but risk factors include obesity, taking certain medications, and having a hormone imbalance.
An excessive amount of fluid in the skull is often suspected. This ends up putting pressure on the brain and the optic nerve.
If the pressure is untreated, it can lead to blindness and other neurological problems.
"Unfortunately, one reasons that children are overlooked is because people just don't think of it," said Roach.
Part of the reason is that it is rare, occurring in only about one in a hundred thousand people. It is most common in obese women under the age of 44.
"Headaches that are unrelenting, headaches that are present every morning, which is a symptom of pressure, headaches that awake a child from sleep might be a little more concern," said Dr. Leon Epstein, a pediatric neurologist at Children's Memorial Hospital.
Epstein has not seen an increase of pediatric cases. He estimates that he treats about 8-10 children a year.
As for a link to obesity, in young children he is not sure it will make a difference, but for older teens it may.
"More obesity in adolescents, as in everybody else in the population, will end up in more cases of pseudotumor in young women and adolescent women, my guess is that will go up, but that is just a guess," said Epstein. "We don't have the epidemiology yet."
A lumbar puncture to confirm elevated pressure can also help correct the problem. There are drugs to treat the condition, as well as other more invasive treatments.
Ashley had eye surgery and a shunt procedure. She's thankful to have her sight... And says the pain is getting better.
Epstein says most children end up doing just fine once they are treated. He emphasizes that it is common for children to have occasional headaches, but a youngster constantly complaining of head pain should be checked out by a physician.
More information
Erin Pope
Nationwide Children's Hospital
614-355-0495
Mayo Clinic
www.mayoclinic.com/health/pseudotumor-cerebri
