Newswise — LOS ANGELES (Aug. 17, 2011) – Nurgul Djantelieva could come home Saturday night with a new, glittering crown and bouquets of flowers.
But even if she doesn’t take top honors at the Mrs. Asia USA pageant, she’s already won an even more important contest – beating a potentially deadly brain tumor the size of a baseball, and not just surviving but coming back strong and representing her native country, Kyrgyzstan, Saturday night.
She credits her neurosurgeons at Cedars-Sinai Medical Center, Keith L. Black, MD; and Ray M. Chu, MD, for saving her life shortly after she immigrated to the United States in 2004. They, on the other hand, give a lot of the credit to her determination and positive attitude.
Nurgul, 32, was a newlywed planning to enroll at UCLA when headaches interrupted her plans. She first blamed the stress of immigration and college entrance exams, but the pain suddenly intensified from bad to severe and she developed double vision. Ophthalmologist Arkady B. Kagan, MD, thought she might have a tumor on her optic nerve, but when the MRI came back, it was much worse than expected.
“Dr. Kagan called me at work, saying he had some troubling news about my wife,” Joseph Sandoval, an immigration attorney, recalls. Kagan explained that the situation was critical and he already had set up an appointment for Nurgul with a renowned neurosurgeon – Keith L. Black, MD, chairman and professor of the Neurosurgery Department at Cedars-Sinai Medical Center.
Stunned, Joseph called his wife, asked her to pack a bag and headed home to pick her up. Within an hour, they were in Black’s office. There, Black and Chu showed Joseph and Nurgul MRI images of a large meningioma growing between the brain and its lining. This type of tumor is benign by pathology – noncancerous – but that does not mean it is benign – harmless – by behavior. “A tumor this size compresses and damages normal brain structures. By the time we saw her, Nurgul was beginning to experience some personality changes, she had blurry vision and trouble reading, and she had intermittent left arm numbness. Without surgery, the tumor would continue to expand, causing irreparable damage and life-threatening consequences,” says Black, director of the Maxine Dunitz Neurosurgical Institute and the Johnnie L. Cochran, Jr. Brain Tumor Center, and the Ruth and Lawrence Harvey Chair in Neuroscience at Cedars-Sinai.
Before the neurosurgeons could operate safely, however, they would have to treat Nurgul with steroids to reduce the swelling in her brain. Five days later, with the swelling controlled, she was scheduled for surgery – the day after her 26th birthday.
As the family tried to celebrate her birthday, Nurgul remembers being afraid that it would be her last. “I just couldn’t believe that I had come all this way from my country, only to die in the United States,” she says. “I didn’t think I had much of a chance of surviving the surgery. And even if I did live, I thought I would have lots of deficits.”
On the morning of Nov. 23, Nurgul was prepped for surgery and her head shaved. Then the neurosurgeons made an incision from one ear, over the top of her skull, to the other ear. Because of the tumor’s size and location, they first removed a large wedge of bone from her skull. They then “cored” the tumor the way the center of an apple would be removed and began the painstaking process of working from the inside to extract tumor without damaging healthy brain.
“With this type of tumor, we remove large pieces at a time rather than trying to take out the entire tumor at once, which could cause more neurologic deficit or bleeding,” Chu explains. The procedure took all day before they finally were ready to replace the bone wedge. When she woke up in the intensive care unit, Nurgul was very scared and disoriented but not in much pain, Joseph recalls. Her life was no longer in danger, but no one knew how much damage the large tumor already had done to her frontal lobes – areas of the brain that control emotions and personality – or what the long-term residual effects might be.
As the brain relaxed into the space the tumor had occupied, cerebrospinal fluid drained into the cavity. “It felt like I had a little waterfall in my head,” says Nurgul, who lives in Marina del Rey, Calif. But after only three days in the hospital, she was able to go home and begin the arduous task of trying to rebuild her life.
For starters, she had to cope with the way the tumor had changed her personality and communication skills. Where she once was outgoing and energetic, she now was introverted and shy. Once trusting, she became suspicious. Humor eluded her and she particularly had trouble understanding sarcasm. Things that once had been second nature seemed foreign and confusing. Her ability to speak English fluently was impaired, but oddly, she still could write in the language without hesitation.
Through it all, Nurgul says, Black and Chu and their office staff at Cedars-Sinai provided support and encouragement. “They took the time to explain what was happening within my body and to assure me that although my progress might be slow, I would eventually be back to my old self,” she says.
“Nurgul has a wonderful spirit and attitude. Any time the brain is affected by a tumor as large as hers was, it is expected that full recovery will take some time, but she is a great example of what a positive attitude, the support of family and hard work can do,” says Chu.
Reclaiming her life, the brain tumor survivor – now the mother of 5-year-old son Maksat and 3-year-old daughter Mirage – will celebrate with a “coming out” party of sorts by representing Kyrgyzstan in the Mrs. Asia USA 23rd Annual Cultural Pageant at the Redondo Beach Performing Arts Center. Longer term, she plans to pursue her postponed dream of studying at UCLA – and to keep celebrating birthdays.
“I now celebrate two birthdays,” she says. “My first birthday is the day I was actually born, Nov. 22; my second birthday is Nov. 23 – the day Dr. Black and Dr. Chu gave me back my life.”
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