Jeanne Sager | Democrat
CLIFF DAVIS OF Liberty holds son Ryan, 2, at home. His physical condition at times makes it hard for Davis to play with his toddler.
Breadwinner's Disease Throws Family In Turmoil
By Jeanne Sager
LIBERTY December 7, 2007 It started with a tingling in his feet.
Four days later, Cliff Davis could barely walk.
He couldn’t go to the bathroom.
He couldn’t stop shaking.
Fast forward two months.
He’s been diagnosed with a rare neurological disorder in plain speak, “they couldn’t get my nerves to stop fighting with each other,” Davis said.
He’s had a lumbar puncture, MRIs of the brain and spine, been poked and prodded to the point where he said he had “holey arms.”
He’s been told recovery can take anywhere “from two weeks to 12 or up to two years,” Davis said.
“It could be never,” he continued. “I never recover.”
The National Institute of Health (NIH) says one third of transverse myelitis (TM) sufferers make a full recovery. Another third recover but have significant loss in quality of life.
The remaining third suffer with the affects of the spinal cord inflammation for the rest of their lives.
Last Friday, Davis was told he “isn’t sick enough” to qualify for additional sick days from the union sick bank at the Liberty Central School.
He’s been begging his doctors to go back to work, but his neurologist is standing firm.
“Mr. Davis can expect to have intermittent weakness, pain and sensory loss for an undetermined length of time, and it is not possible to predict long-term prognosis,” wrote Davis’ neurologist, Dr. L.L. Garten, in a letter to the school district this week.
“Mr. Davis did attempt to return to work on 11/8/07, but unfortunately suffered a relapse in symptoms . . . he has been advised to avoid exertion which may lead to more neurological damage.”
Dr. Donald Roth, Davis’ primary care physician in Liberty, knew within 10 minutes what was wrong with his patient.
“I’ve been looking for it for 40 years,” Roth said. “It’s extremely rare it’s 1 out of 2.5 million cases per year.”
When he sent Davis up to Imogene Bassett Hospital in Cooperstown, he warned him.
“Every doctor in central New York is going to come and see you because no one’s ever going to see this again.’”
That was Oct. 1 four days after Davis’ feet started tingling.
On Monday, the 1st, he and wife Sandy went to the emergency room at Catskill Regional Medical Center in Harris.
They diagnosed him with urine retention, inserted a catheter and told him to check up with his physician in three days.
Davis refused to leave with the catheter in place.
“He was being a typical man,” Sandy recalled. “But in retrospect, if he had left the catheter in, went home and laid in bed for two days, he could have been paralyzed.”
Instead the Davises went home, went to family court to deal with a personal matter, and by 3 p.m. Cliff told Sandy to drive him to Roth’s office.
“I could barely walk in the courtroom,” he said. “By the time I was there, I was just trembling. I couldn’t stop shaking I looked like I was having a seizure.”
The numbness from the lumbar down, the urine retention and constipation, the fact that the areas affected were on both sides of the body . . . they all pointed Roth immediately to transverse myelitis.
“There are very few things that present anything like this and have an acute onset,” he explained. “But if you’re not looking for it, you’re never going to make this diagnosis because it’s so rare.”
In Cooperstown, the Davises spent 23 hours in the emergency room waiting for a bed.
“But for being in the emergency room for 23 hours, they were extremely accommodating,” Sandy noted. “Within 30 minutes of being there, he’d been registered and triaged, seen the ER doctor and been catheterized.”
They brought Cliff a bed and let Sandy rest on a cot.
The next day, he was moved to the intensive care unit (ICU), and his symptoms got much worse.
Caused by inflammation of the spinal cord, there is no set cause for TM, nor is there a cure.
The most common treatment is prednisone, a steroid, to bring down the inflammation.
Prescribed by the Cooperstown doctors, the prednisone attacked the symptoms of Cliff’s disease, but there is nothing to actually treat whatever has caused his condition.
Initially, it didn’t seem to work.
“They asked me if I was aware of his [do not resuscitate] wishes,” Sandy said. “They were afraid if he continued in the disease he’d lose lung function, and he’d have to be intubated.
“Someone would have to make his decisions for him.”
“They thought I wasn’t going to make it,” Cliff said frankly.
The hospital told Sandy to go home to Liberty; she couldn’t stay in the ICU.
“I fought tooth and nail,” she said. “I’d just been told my husband might have to be intubated.”
The doctors relented, and Sandy stayed.
Fortunately, Cliff rebounded. The next night, she was able to take a trip home to see their son, 2-year-old Ryan.
She returned Wednesday to find 40 people in his room Bassett is a teaching hospital, and as Roth had warned, Cliff’s is an extremely rare disease.
He wowed doctors, despite gaining 20 pounds because of the prednisone, and going six days without being able to move his bowels.
In nine days with the help of physical therapy, he regained the use of his faculties.
They discharged him, still on the prednisone, with the addition of anti-seizure medications and muscle relaxants.
Finding the root cause
So far, the doctors have ruled out two of the four possible causes of TM.
His brain scans showed no signs of multiple sclerosis, although that doesn’t rule out Davis’ developing MS down the road.
Doctors also cleared the infectious route there were no signs of mononucleosis, chicken pox or even a middle ear infection.
He’ll go to Rochester later this month to meet with a specialist to determine whether ischemia essentially a stroke in the spinal cord could be at the root of his problem.
Depending on the results of that visit, doctors may still have to investigate the idiopathic cause of TM literally meaning the disease is “of unknown origin.”
Even finding the cause won’t necessarily help Cliff.
He has good days and bad days.
“Even on my good days, I’m going to have tingling in my feet,” he said. “My feet feel like I jumped off a 10-story building.”
He sleeps only when he takes a muscle relaxant even then it’s in fits and starts.
How to support the family
Keeping him awake isn’t just the pain.
It’s the thought that he can’t support his family.
Sandy works 30 hours a week as a medical assistant for cardiologist Dr. Muccia.
The Davises both have two children from previous marriages. Including Ryan, that’s five children they have to help support.
They just bought the home where Cliff was brought up in May now there’s a for sale sign in the window.
“We’ve already had discussions of what do you sell to keep the house,” Sandy said with a sigh.
“We’re going to have five kids here Christmas morning how do you do that?”
Cliff quickly changes the subject.
“I begged the doctor to let me go back to work,” he said.
On Nov. 9, he went in to work in the buildings and grounds department at the high school.
He’s been employed by Liberty schools since August 2006 his title was part-time cleaner even though he was working full-time.
He joined the union eight months ago, donated a sick day to join the union sick bank.
He was supposed to become an official “groundskeeper” on Oct. 1 the day he was diagnosed.
When he went to work on Nov. 9, Davis made it four hours.
He was taking down a goal post on the football field when his body gave out.
His boss drove him home, a co-worker drove his truck.
Garten has told him no more. The risk of a secondary injury is immense and he can’t drive heavy machinery because of the vibrations.
No disability at LCS
Sandy asked the school what they’d do if Cliff returned in his condition and got hurt again.
“They told me, ‘That’s a chance he’ll have to take,’” she said, incredulous.
Although Cliff is officially disabled, Superintendent Mike Vanyo said the district does not carry disability insurance.
Nor can Cliff apply for unemployment because he’s still employed by the district and intent on returning to his job when he recovers.
“I fought tooth and nail to get that grounds position,” he said. “I still have the position the position is mine.”
He’ll return to Garten in January, and he’s hoping by then the pain and weakness will have subsided.
Vanyo couldn’t comment on Davis’ case because it’s a personnel matter. Officially the union makes the decisions on the sick day bank.
Frustrating for Cliff is the fact that people don’t see him as sick. All he wants is for the pain to end, so he can return to work.
But people associate spinal injury with being paralyzed, Sandy said, with being in a wheelchair.
The fact that Cliff’s condition isn’t obvious to the naked eye shouldn’t sway people’s opinions, Roth said.
“Just the fact that there isn’t a cough or a broken bone doesn’t mean it isn’t real,” the doctor said. “He’s got a disease this is no joke.”
For Sandy, the hardest part is watching Cliff every day in pain.
“He can’t get on the floor to play with Ryan, it hurts too much,” Sandy said. “Ryan pats the floor and says, ‘Daddy, Daddy,’ but he can’t.
“It’s miserable,” she said. “It’s miserable for him, it’s miserable for Ryan.”