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."