Lady Lake resident needs surgery to relieve the effects of rare neurological disorder

By GLENDA SANDERS, DAILY SUN

LADY LAKE — Tina Burd, 36, sat on the back porch of her Lady Lake home, squinting, even in the shade, against the sunlight.

“Ignore my moans and groans,” Burd said, mocking the pain that is her constant companion, lurking nearby in threat when not actually holding her in thrall.

“I always have a headache,” she said. “It’s pretty constant. I can be fine one moment and hit with a bad one in two seconds.”

Burd’s headaches are the result of Chiari Malformation, a neurological disorder that, according to MedicineNet.com, affects more than 300,000 people in the United States.

With Chiari, the cerebellum, or bottom part of the brain, is too low, often descending out of the skull, and puts pressure on the brain and spine.

In plain language, the disease causes the cerebellum to function much like a cork in a narrow bottle, not only pressing against the brain stem and spinal cord, but slowing down or cutting off the normal flow of cerebral spinal fluid from the brain and down the spine and back.

Burd’s Chiari is so severe that she feels changes in barometric pressure because of weather conditions.

“I’m a human barometer,” Burd said. “When the pressure drops, it gets bad.”

Like most healthy people, Burd never had heard of Chiari until she began experiencing symptoms in 2002, including headaches and “drop attacks,” during which her legs suddenly fold beneath her.

Burd’s husband, Clark, who has become something of a Chiari scholar since his wife’s medical problems began, said that Chiari usually either shows up in the rapid growth years of the early teens or, as in Burd’s case, waits until the person is in the mid-30s.

Other issues

As her headaches intensified, Burd was diagnosed with Chiari. She only recently learned that she also has tethered cord syndrome, which is a contributing factor.

Ordinarily the spinal cord moves freely within the bony spine, like a piece of string strung through a soda straw. When the cord becomes tethered to a bony part of the spine, often because the spine did not fully close properly during development, the cord is unable to move properly when the person bends or stretches. The cord itself stretches, damaging muscles and nerves that control the legs, feet, bowel and bladder.

In the last few years, Burd explained, doctors have discovered a strong link between tethered cord and Chiari, theorizing that the pressure of the tethered cord pulling down on the spinal cord actually can pull the cerebellum down to create the Chiari.

“It took me a week to come to terms with the fact that my spinal cord was pulling down on my brain,” Burd said.

She touched the area behind her ear with her fingertips.

“It feels almost like one of those squishy stress balls,” she said. “Sometimes I can move it.”

The pressure of Chiari has interfered with her pituitary gland, which regulates hormones related to metabolic function, and Burd has gained weight as a result.

Burd’s situation is further complicated by Ehlers-Danlos Syndrome, an inherited condition that causes loose joints and weak tissues.

“Doctors say sewing up someone with Ehlers-Danlos is like trying to stitch wet toilet paper together,” Clark said.

“I’m a triple threat,” Burd said, again poking fun at the unrelenting health problems that have stolen her quality of life. “I’m just a walking disaster. It takes me a long time to do things that used to take 10 minutes. I don’t leave my bedroom very much.”

In addition to the headaches, her legs are numb, making it difficult to walk.

Hoping for help

As she sat on the back porch last week with her eyes almost closed against the daylight that hurts her head, Burd’s cordless phone was on the table in front of her, within easy reach, in case her insurance company called.

Next week, Burd is scheduled to go to the Chiari Institute, part of North Shore Jewish Hospital, in Great Neck, N.Y., to have surgery to release the tethered cord to prevent further nerve damage and reduce some of the pressure on the spinal cord that is pulling her brain down onto her brain stem.

“There will be 25 to 30 people in the operating room, checking nerves to determine if they’re dead or alive,” Burd said.

Healing time for the surgery is normally three months, but because of the Ehlers-Danlos, doctors have told Burd that her recovery probably will take up to five months.

The surgery is not a cure-all, but it has the potential to improve the quality of her life.

In August, the Burds went to Great Neck for testing and screening to determine if Burd was a candidate for the surgery, and the specialists there agreed that she is. The insurance company, however, took the stand that the surgery was experimental.

“It’s considered experimental in Florida. It’s not experimental in New York,” Burd said. “My doctor there is working with the insurance people.”

Burd is confident that the issue will be resolved, but time is becoming an element. If the approval is not forthcoming soon enough, the surgery might have to be postponed and the discounted flights she and her husband purchased early in order to get the best rates might have to be changed, resulting in extra charges. So, she keeps the phone at her fingertips, hoping to hear that the surgery has been approved.

Money is an issue for the couple. While Burd has medical insurance, her surgery will be considered “out of network,” and not all the charges will be covered. Medications and traveling expenses are not covered, either.

Love INC is paying for a rental car while the couple is in New York so they can stay at more reasonably priced hotels a distance from the hospital, and a Presbyterian church in the Great Neck area, contacted by the Hopekeepers at North Lake Presbyterian Church in Lady Lake, to which the Burds belong, has offered to help pay for their hotel.

The Burds also have set up a trust fund to help with her medical-related expenses not covered by insurance, and they would appreciate help from the community.

“I’m hoping to be better, to get some of my quality of life back,” Burd said. “If surgery’s not done, I won’t get better. Any help is greatly appreciated.”

By sharing her story with Daily Sun readers, Burd also hopes to raise awareness of Chiari.

“There’s people who suffer 15 to 20 years without being diagnosed,” Burd said.

Glenda Sanders is a features writer for the Daily Sun. She can be reached at 753-1119, ext. 9245, or glenda.sanders@thevillagesmedia.com.