Another Chiari Sufferer’s Story
The following is a recent story about a Chiari patient from the Ft. Worth Star-Telegram dated June 15, 2011…
BY ELIZABETH CAMPBELL
BURLESON — Clyde Walker spends most of his time propped up in a recliner, unable to do much for himself.
Standing, walking or even lying in bed sends pain shooting through his body. He has difficulty breathing and swallowing food, and his arms are becoming weaker by the day.
He can’t work as a mechanic anymore, he’s been forced to move out of his home, and he delayed seeking treatment because of his inability to pay.
“I’m dying an excruciating death,” Walker said, describing his rare condition, Chiari malformation, in which the brainstem doesn’t form properly. That prevents spinal fluid from circulating properly, causing nerve damage and other complications.
“I am losing my business because of this. I can’t keep up in the office anymore,” he said.
But some relief may be on the way.
Walker, 50, was recently chosen to participate in a five-year study at the National Institute of Neurological Disorders and Stroke, which is part of the National Institutes of Health in Bethesda, Md.
On Sunday, Walker and his brother Tony flew to Maryland, and he is scheduled to undergo surgery Friday.
Dr. John Heiss, a neurosurgeon who will perform the operation, said Chiari malformation affects 1 in 10,000 people. The surgery lasts several hours and involves removing the bone from the base of the skull, creating more space for spinal fluid to circulate. The surgery is not a cure, but doctors hope it will improve Walker’s quality of life.
The milder form of Chiari malformation causes headaches, but Walker’s symptoms are more severe, he said. Walker’s spinal cord is injured because of the malformation, and his upper body is starting to weaken, Heiss said.
“Our main reason for doing the surgery is to keep Mr. Walker from getting worse,” Heiss said. “Now, he is having pain and weakness in his arms. We don’t want things to progress to the point where he can’t walk or do things for himself.”
Paralysis can lead to other complications, such as infections and blood clots.
The study will track patients’ progress after the surgery. In many cases, Heiss said, people have surgery but no follow-up takes place.
The diagnosis
Dr. Gregory Skie, who practices in Mansfield, said he diagnosed Walker’s Chiari malformation. The cerebellum extends below the head into the spinal column, putting pressure on it.
“Mr. Walker was more complex than I imagined,” Skie said. “He’s typical of my male patients. He didn’t get in to the doctor like he should have.”
Skie said another doctor referred Walker to him because he could not figure out what was wrong. He said Walker’s situation had grown worse in the past couple of years because he was too weak to repair cars and had no medical insurance. Skie said he negotiated with a radiologist to do MRIs at a price that Walker could afford, which is how he discovered the Chiari malformation.
Local neurosurgeons can perform the surgery, but it would cost Walker at least $150,000, Skie said.
Walker said he learned of the NIH study while researching his condition online. Skie was a fellow at the institute during the 1980s and knew of its research capabilities. Skie sent in Walker’s records, including the MRI scans.
“This is a person who inhibited himself because he couldn’t pay the bills, but we found resources available for him to get a diagnosis,” he said. “We then got him into our only national research hospital. I am thrilled with that. This surgery will not only save his life, but it will prevent him from having paralysis of his upper-left extremities.”
Gradual deterioration
Walker said things have gradually worsened. At first, he had severe headaches if he coughed or sneezed, and his condition continued to deteriorate.
He is also concerned that his daughter, Nikki Walker, could have the disease, as she has some of the symptoms.
Because of his weakness, Walker can no longer repair cars at his garage, East Renfro Automotive Center, and his daughter is working without pay to keep the business going. Because of his illness, Walker also lost his home and is living in a run-down trailer that he said was destroyed by renters.
Walker, who will be in Maryland for about three weeks to recuperate, said he is grateful that he was chosen for the study.
Tony Walker, who will stay at the NIH with his brother, said he has no Chiari malformation symptoms. Studies show that 10 percent of people diagnosed with the malformation also have a relative with the disease.
Tony said he worries about his brother’s well-being and hopes that the surgery will bring relief. Learning about the surgery “scared the hell out of me, but it scared the hell out of me for him not to have it.
“It’s a risky surgery, but Clyde has no quality of life without it.”
Elizabeth Campbell, 817-390-7696
Let’s hope Clyde is successful in his efforts and finds relief and a return to the quality of life that he is seeking!!!
