Â*LIFE | Wednesday, July 17, 2002

Living in pain

Mary Litchfield of South Point must suffer with chronic malady
By BOB WITHERS - The Herald-Dispatch
To help Mary

The Mary Litchfield Medical Fund has been set up to receive donations from those who want to help the South Point, Ohio, Tarlov cyst sufferer keep her appointment with Dr. Praveen Mummaneni in Atlanta next week.

Donations may be taken to US Bank at 702 4th St. E. in South Point or mailed to the bank at P.O. Box 12, South Point, OH 45680. "Donations also may be deposited at any US Bank," says Jeanie Malone, sales and service manager at the South Point location.

As of Monday, $100 was in the account.

SOUTH POINT, Ohio -- Mary Litchfield lives with excruciating pain. She has lost her job and her husband. She can't drive. When she walks, she keeps her right heel off the floor. Her savings are gone, and she can't pay her rent.
And, she says, few people believe she's sick.

Litchfield, 38, has been diagnosed as suffering from Tarlov cysts -- nerve root cysts that develop most often in females at the sacral level of the spine.

Most people with Tarlov cysts -- about 1 percent of the total population -- have no symptoms, according to the Tarlov Cyst Support Group, which is based in Santa Cruz, Calif. But more than 20 percent of cases become symptomatic, bringing on a potentially incapacitating neurological disorder. They can become symptomatic for no apparent reason, or because of an event -- such as an automobile accident, a fall or heavy lifting -- that causes a marked increase in cerebrospinal fluid pressure. Typical symptoms include pain in the lower back, coccyx, hips, buttocks and legs. The cysts also may cause tingling, burning and lead to disorders of the bladder and other organs in the pelvic area.

And, at this point, surgery to correct the problem is challenging, and the results uncertain.

Litchfield realized she had a problem about four years ago after the birth of her third child.

"I just thought it was a tough delivery," she says. "I developed pneumonia, and I went back to skiing and exercise. But despite everything I did, I could not balance the pain in my lower right back."

On the Web

To find out more about Tarlov cysts, log on to www.tarlovcyst.net.
In fact, it got worse.

"I thought I had endometriosis," she says. "The pain was so bad, I couldn't walk, talk or work. It felt like a crowbar was in my hip pulling everything away."

She tried everything -- hormone patches, physical therapy, a CT scan, a complete hysterectomy. Nothing worked.

Finally, she was diagnosed as bring hysterical.

"I started believing, 'Maybe this IS in my mind,' " she says.

Six months after Litchfield suffered a stress stroke in June 2001, her doctor prescribed an MRI.

"The radiologist's report said it showed a Tarlov cyst on the S-2 area," she explains. " 'What is Tarlov?' I asked my doctor. She said, 'I don't know.' "

Before she found the Tarlov Cyst Support Group's Web site, her life went from bad to worse. She lost her job -- "The pain got to be too much" -- and her third husband.

"I cried all the time," she says. "He though I was losing my mind. That was his excuse to get out; he didn't want to watch what I was going through."

The support group put Litchfield in touch with Dr. Fraser Henderson, a pioneer in TC research at Georgetown University in Washington, D.C., who agreed to see her. But managed-care red tape prevented the visit.

Henderson did suggest a second MRI, which was done at King's Daughters Medical Center in Ashland in April. It found that the Tarlov cyst had grown and that there were three more -- all in the pelvic region.

"I am the first person in this area to be diagnosed with Tarlov cysts, and the first person anywhere to be diagnosed with four of them," she says.

For now, Litchfield manages her pain as best she can. She takes 100 milligrams of Duragesic per hour, administered by a small patch taped to her chest.

"Without it, I wouldn't be moving," she says.

But she wants more. She wants to raise awareness of the disorder and start a local support group. She's sure more local sufferers -- who presently don't know what they have -- can be found.

But she has an uphill fight.

"My own family is doubting me because Tarlov cysts are so rare," she says. "I want my whole family back."

And she wants relief.

Litchfield has an appointment July 24 with Dr. Praveen Mummaneni, a neurosurgeon who has done TC research for the past 10 years at Crawford Long Hospital's Emory Clinic in Atlanta.

"He will evaluate me in writing, but he can't legally do it until he sees me," Litchfield says.

The hurdles of red tape have been surmounted -- now all she needs is money to make the trip. A hearing has been scheduled for her before an administrative law judge in Portsmouth Thursday to see if she can get Supplemental Security Income, according to Philip Litteral, a technical expert in Social Security's Ironton office. And a trust fund has been established to receive donations at US Bank.

Meanwhile, members of her church -- South Point First Church of the Nazarene -- have filled in as her support group.

"I had a tumor inside my spinal cord, so I know what she's going through," says church member Sue Sherman, who calls Litchfield daily. "Having something that's difficult to diagnose is frustrating. We've tried to really encourage her and help her and tell her how prayer really does work."

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