For more than four months, a clear, tasteless liquid leaked out
of Aundrea Aragon's nose whenever she bent over, but doctors reassured
her that it was only allergies."It wasn't even
dripping, it was pouring out of my nose," said Aragon, a 35-year-old
mother from Tucson, Ariz. "If I looked down or bent over, it would
literally pore out of the left side of my nose. I had no control at
all."
Even though doctors "blew off" her concerns, Aragon said
that "deep down," she knew something was seriously wrong. It was: Her
brain was leaking cerebrospinal fluid through two cracks in the back of
her sphenoid sinus, a condition that could have killed her.
"I am
still kind of in shock," said Aragon, who had surgery at the University
of Arizona Medical Center in
October. "I was very fortunate. They said I
could get meningitis and go into a coma and die." Aragon's condition - a
cerebrospinal fluid leak - is rare, occurring in only 1 in 100,000 or 1
in 200,000 patients, according to her surgeon, Dr. Alexander G. Chiu,
chief of the division of otolaryngology.
Most often it is seen in
overweight patients who have high cranial pressure, and the sinus "pops
open." Sometimes a car accident or head trauma can cause a tear. "In
her case, it was more of a freak thing," said Chiu, who has treated only
about 100 cases. The danger isn't the loss of fluid, according to Chiu,
rather infection.
"You are constantly making brain fluid," he
said. "It can be fatal when there is a connection between the cleanest
part of the body, the brain, and the dirtiest part, the nose." Chiu and
his colleague, neurosurgeon Dr. G. Michael Lemole, used an endoscopic
method to access the sinus and patch up the two sinus cracks. They
entered the sinus through the nose and grafted skin over the leaky
spots.
University of Arizona is the only medical center to
routinely perform this procedure and and has the largest volume of
endoscopic skull base cases in the state. In many other hospitals,
surgeons repair these sinus cracks with a craniotomy, which can cause a
painful recovery, extensive scarring and possible side effects.
That
procedure can be "scary," according to Chiu. "We retract the brain and
pull it backward, taking out the frontal lobes and lift them out of the
way and patch up the belly of the brain," he said. "Now, we go right
through the nose - like going under the car to fix the carburetor," he
said.
Surgeons injected dye into Aragon's spinal fluid to find
the exact location of the leak. "Usually it's colorless, but the fluid
turns it green," he said. The endoscopic route is safer because surgeons
stay well away from the optic nerves and the part of the brain that are
responsible for smell.
Performed endoscopically, the procedure
is successful in 95 to 99 percent of cases; it is only 60 percent
successful when performed via craniotomy, according to Chiu. "Scar
tissue grows over the graft and it protects her for the rest of her
life," he said. "It shouldn't happen again - she's so young."
Still,
Aragon will have to be monitored several times a year. "She's not
leaking anymore, but we have to make sure she doesn't spring a new
leak," said her doctor. Aragon said that she is still freaked out by how
close she came to death. Just weeks before the CFS leak began, she'd
had a sinus infection and antibiotics may have given her some protection
from infection.
Aragon was so busy with her three children, age 9
to 16, one of whom is autistic, that she didn't question the numerous
doctors who were convinced she simply had allergies. One doctor did
mention the "rare" possibility of a CSF leak, but dismissed it and gave
her a nasal spray.
"In the meantime, I was literally drinking
this fluid and my chest was hurting," said Aragon. 'I was waking up
choking on the liquid. I thought I had pneumonia. I was walking around
my house with paper towels shoved up my nose and changing it every 10
minutes," she said.
Having suffered from fibromyalgia for years,
Aragon said, "I was used to being in pain all the time." But because she
is the main caregiver for her autistic daughter, Aragon tends to take
her health seriously. "When something happens to me, I am quick to take
care of things," she said.
When the nasal spray didn't work, she
became "pretty distraught" and went to an urgent care center. The nurse
was shocked when she saw the volume of fluid left on the floor when
Aragon gave her urine sample. And when the doctor asked her if she could
leave a small amount of fluid for testing, she replied, "I can fill
that tube up 20 times over."
Even the doctor was shocked. "You
should have seen his face, when he tried to be expressionless," she
said. The fluid was sent for lab analysis, and Aragon was sent to an
ear, nose and throat specialist. A protein indicates whether it is
cerebrospinal fluid.
When results came back positive and a CT
scan revealed two lines in her sinus, she was referred to the University
of Arizona Medical Center. The two-hour surgery went well and Aragon
didn't experience as much pain as most patients. Doctors used tisssue
from inside her nose and a small patch of skin from her belly fat to
graft over the cracks.
"The doctors were wonderful and so
respectful of my religion," said Aragon, who is a Jehovah's Witness and
is not allowed to use blood products. "They never rushed me and answered
all my questions and explained everything - even my dumb questions. I
feel so much better," she said. "I was very, very fortunate."
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