Phantom Brain Tumors

[Guest guest]

By _ Beth Sammons_

(http://www.aolhealth.com/bloggers/mary-beth-sammons) May 5th 2010 11:54AM

(http://www.aolhealth.com/categories/news/) It's a Friday night, and

just wants to hang out with friends. But instead, the 15-year-old

high school freshman is at home buried in homework.

At age 5, she was diagnosed with a rare condition that causes massive

_headaches_ (http://www.aolhealth.com/condition-center/headaches-migraines)

that

strike without warning. Since then, the Gahanna, Ohio, teen has missed so

much school that she is forced to spend most weekends and every summer bent

over her desk to keep up with classmates.

" I don't get to hang out like normal kids, " says (pictured). " And

other kids are always saying, 'You don't look like you are sick,' or 'Well,

you don't have cancer.' "

The teenager described the _headaches_

(http://www.aolhealth.com/condition-center/headaches-migraines) , which wake her

up most nights, as feeling as

if she is " being hit in the head. " " I wake up exhausted, " she says.

The massive _headaches_

(http://www.aolhealth.com/condition-center/headaches-migraines) have created an

endless 10-year nightmare of _medical_

(http://www.aolhealth.com/drugs) tests, resulting in more than 30 surgeries

and

50 hospitalizations, which have prevented her from attending more than two

hours of school each day. She is also tutored privately. Recently, the

dizziness and _headaches_

(http://www.aolhealth.com/condition-center/headaches-migraines) forced her to

quit her favorite pastime, tap dancing.

" They told us [initially] she had a _brain tumor_

(http://www.aolhealth.com/conditions/brain-tumor) , " says her mom, Diane, who is

a pediatric nurse.

But doesn't. What she does have is a phantom _brain tumor_

(http://www.aolhealth.com/conditions/brain-tumor) , or pseudotumor cerebri.

Diagnosed during a routine eye exam, is one of a fast-growing number of

mostly adolescents and some younger children who are being diagnosed with this

puzzling and complex condition that appears to be -- but is not -- a

tumor. The _symptoms_ (http://www.aolhealth.com/symptom-checker/) are

characterized by chronically increased pressure in the head and include severe

headaches, _dizziness_ (http://www.aolhealth.com/conditions/dizziness) and, in

the most debilitating cases, loss of eyesight.

With a frightening number of children -- 80 last year alone -- diagnosed

at _Nationwide Children's Hospital_ (http://www.nationwidechildrens.org/) in

Columbus, Ohio, the facility recently launched the first clinic in the

country dedicated to _treating pseudotumors in children_

(http://www.msmediacenter.tv/story.php?id=80) .

Diagnoses of _pseudotumor cerebri_

(http://www.aolhealth.com/conditions/pseudotumor-cerebri) have increased

dramatically in recent years, says Dr. E.

Steve Roach, chief of neurology and vice chairman of pediatrics at

Nationwide Children's and professor of pediatrics and neurology at The Ohio

State

University College of Medicine.

" We're still unaware of the precise reason for the increase in the number

of incidences in children and especially adolescents, " he says. " But we

have pinpointed that the leading risk factor is childhood _obesity_

(http://www.aolhealth.com/condition-center/obesity) , with two-thirds of the

cases

attributed to that. And that leads to an obvious assumption that the increase

in childhood _obesity_ (http://www.aolhealth.com/condition-center/obesity)

is propelling the spike. Traditionally, this has been a condition found in

adults. "

In the last year alone, the hospital has identified dozens of teens and

small children with the illness, more than Roach has seen in the last 15

years. The researchers hope to study the causes and to investigate the other

one-third of cases, like 's, that do not fall under the _obesity_

(http://www.aolhealth.com/condition-center/obesity) risk factor, he says.

" Through the clinic, we can find kids with this condition earlier and get

them treated, " says Roach. " I mean, it's really a crying shame to have an

8-year-old lose their vision when we could prevent it. "

The hospital's pseudotumor clinic will also simplify treatment for

children and teens suffering from the debilitating condition. The cooperative

of

eye doctors, surgeons and imaging specialists working in one place toward

one goal will lessen the burden of the condition on patients that typically

take dozens of medicines, sometimes endure countless surgeries and travel

extensively to see different specialists.

Currently hard to diagnose, _pseudotumor cerebri_

(http://www.aolhealth.com/conditions/pseudotumor-cerebri) is typically

suspected after a child

with headaches is found to have optic nerve swelling, says Roach. The diagnosis

is confirmed after a brain scan eliminates a tumor and the pressure

elevation is confirmed. After that, the child's visual function is closely

monitored, and any underlying risk factors are eliminated. While _medications_

(http://www.aolhealth.com/drugs) are typically administered to relieve the

pressure, surgical procedures to lower the intracranial pressure or to

prevent pressure damage of the optic nerve are prescribed as needed.

" This has been very tough on , " says Diane, who helped start an

organization called _IHGraymatters_ (http://www.ihgraymatters.org/) , dedicated

to connecting other families whose children have pseudotumors to resources.

" We thought it was the worst thing we could ever hear when we were told

had a _brain tumor_ (http://www.aolhealth.com/conditions/brain-tumor)

, " she said. " If we only knew then what the endless battle would be like.

Now we just want to help make it a little easier on other families to get a

diagnosis and get on the road to treatment much faster. "