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Mind matters - About 17,000 brain tumors diagnosed each year
By Cindy Sutter, Camera Staff Writer
January 31, 2005 - Nancy Kish was visiting San Francisco in September 1994 and was standing on a dock when she had a profound feeling that something was terribly wrong.
"I could feel the blood going through my arms, pulsing through my legs. I just didn't feel right all over," says Kish, of Boulder. The feeling passed quickly, in a few seconds. But it happened again in October, several times, and continued to occur.
Nancy Kish, right, and her friend Liz Bernard talk in front of the Trident coffee shop on Tuesday, after walking from Kish's home as they do several times a week. Kish and Bernard have been walking together for nearly five years. Kish had a meningioma, a tumor characterized by the abnormal grown of cells on the meninges, which is the outer covering of the brain.
Kish, now 58, was experiencing what doctors call an aura, an event in the brain that often precedes a seizure. Sometimes auras are experienced as anxiety, tension or a feeling that something is wrong, as in Kish's case. Or they can be an odd smell, a funny taste or an intense feeling of deja vu. While a seizure may follow the aura, in some cases, as in Kish's, the 10-15 second aura is the entire event.
Whatever the manifestation, an aura should be checked out. In December, at the urging of her sister, Kish saw a neurologist. An MRI revealed a brain tumor about the size of a tangerine that was wrapped around Kish's carotid artery. It was a meningioma, a tumor characterized by the abnormal grown of cells on the meninges, which is the outer covering of the brain.
About 17,000 brain tumors are diagnosed each year, according to the Brain Science Foundation, a nonprofit affiliated with the Department of Neurosurgery at the Brigham and Women's and Children's Hospitals in Boston. The number is believed to be under-reported since about 2 percent of routine autopsies reveal undiagnosed brain tumors, and some states do not require the reporting of non-malignant brain tumors. Meningiomas make up about 27 percent of all primary brain and central nervous system tumors. Their cause is unknown. If there can be said to be good news when a brain tumor is diagnosed, it is that meningiomas, such as Kish's, are generally benign.
"They are very slow growing. Only 2 to 3 percent are malignant," says Dr. Wayne Wittenberg, a neurosurgeon in Lafayette. "The problem is ... they can impinge and push on the brain, optic nerve and all the nerves going into the face. They can be in locations that can cause very serious problems."
While surgery is the treatment of choice for meningioma, only part of Kish's tumor was operable. She had surgery in January 1995, in which doctors removed as much of the tumor as they could reach, and again in 2000 because the tumor had begun to grow again. A series of MRIs since then have not shown any growth.
Wittenberg says meningiomas generally follow what he calls the 80-20 rule. "Studies show that if you can excise it completely at surgery, after about 10 years of follow-up, 8 out of 10 are tumor-free. Two out of 10 show some recurrence. (A tumor) usually recurs in the first two or three years," he says. If it hasn't recurred in that period, it's less likely to come back.
Surgery is well-tolerated by most people, and most recover many of the deficits such as weakness or numbness in the limbs, that sent them to the doctor for diagnosis, Wittenberg says. However, those who lose vision or hearing generally don't regain it. Other problems are more subtle. Kish struggles with short-term memory. "I do a lot of list-making, so I don't forget things," she says. "I use a calendar, a daytimer and make a list of things."
However, she gave up a career in real estate.
Meningioma symptoms
Persistent headaches; problems with concentration, memory, and/or forming words; personality changes; blurred or double vision or loss of peripheral vision; gradual loss of sensation in an arm or leg; balance or hearing problems; difficulty swallowing; drowsiness; seizures; decreased sense of smell
Source: Mayo Clinic
"That's a million little things to remember, day after day," she says.
For Liz Holzemer, a Highlands Ranch resident and graduate of the University of Colorado, a meningioma changed the course of her life.
Holzemer was diagnosed in February 2000 at age 32. She discovered her tumor as she and her husband of five years were trying to start a family. Unable to get pregnant, she was told her ovaries had shut down. The doctor suspected a tumor on her pituitary gland.
In the meantime, Holzemer was having migraine headaches as frequently as once a week, a swishing in her ears and feelings of deja vu that doctors later said were partial simple seizures, similar to the auras that Kish experienced.
When she had an MRI, it revealed a tumor the size of a baseball that pressed up against her right optic nerve, carotid artery and sinus cavity. Her neurosurgeon said he was surprised she hadn't slipped into a coma.
She had surgery and began her recovery, when after four months, an area that wasn't healing properly required a second surgery. Holzemer found recovery difficult. "It was hard to let people take care of me," she says. However, she realized she had to give up control. "You have to let go of the reins to have a strong recovery. You have to delegate." Still, there were many difficult days. She'd wake up feeling good, take a walk, and be exhausted for three days. "I felt life is passing me by. But I knew it would get better."
She was touched by the support she received. "People I didn't know were coming over bringing meals for us," she says. She got pregnant, despite doctors' expectations to the contrary, and gave birth to a daughter in September 2001.
When a neighbor was also diagnosed with a meningioma, she was able to help him through the process. Her experiences led her to create Meningioma Mommas, (www.meningiomamommas.org), an online support group for meningioma survivors (not just moms) that has grown to 800 members worldwide. More than 60 people from Colorado belong to the group, including Kish, who has met with Holzemer and other Colorado members.
"If I have a problem tomorrow, I can call her," Kish says. "Do you know what a gift that is, (to have) somebody on your wavelength?"
The site has links to the latest facts on meningioma, Holzemer's story, including her rather shocking MRI; a section where members can post thoughts and problems; and even a section called Tumor Humor, with cartoons and jokes about brain tumors.
"Our goal is while comforting you, we're educating you," Holzemer says. "I didn't learn until after diagnosis how common meningioma is."
Survivors also need help dealing with the aftermath, she says. Even though Holzemer had a good result from her surgery, she's on anti-seizure and thyroid medication. She doesn't have any feeling on one side of her face. Some members walk with canes, and many have memory problems, she says.
Then there's the fatigue that hits hard at times.
"I always describe it as the sensation of being in the ocean and having my feet buried in sand," she says. "It's just a constant, even to this day. I hit a wall, and I have to sit or lie down."
Still, life is much better than she would have dreamed.
In April of last year, Holzemer and her husband had a son, and running Meningioma Mommas has turned out to be a way to use her journalism degree and help others face the difficulties she well understands.
Kish, who has been married happily for 36 years and has three grown children, also has a renewed understanding of the preciousness of life. "It's such a blessing to be alive," she says. "It makes you appreciate every single thing."
Contact Camera Staff Writer Cindy Sutter at (303) 473-1335 or sutterc@dailycamera.com.
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