LIVING IN PAIN AFFLICTION For chronic pain sufferers, even hope can hurt
.
by Carl T. Hall, Chronicle Science Writer
Monday, April 5, 1999 ©1999 San Francisco Chronicle
URL:
http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/1999/04/0
5/MN37A1P.DTL&type=health
FIRST OF TWO PARTS
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It has been nearly 28 years since Chris Ally rounded a blind turn on his
motorcycle and ran head-on into a delivery truck.
Eighteen days after the accident, when Ally, then 23, finally came out of
his coma, doctors and family members gathered around his hospital bed told
him how lucky he was to be alive. Soon, he would begin to wonder.
Ally, son of the late New York advertising legend Carl Ally, was six months
out of college; he had been working in a motorcycle dealership, making good
money, riding high.
The accident sent him hurtling into a new world: a place where his body
became the enemy and some malevolent power seemed to have hijacked his
brain.
He was on a highway again. Twenty-eight years later, he is still trying to
get off.
``It's taken my whole life from me,'' he said. ``After 28 years, there's
nothing left in my life but the pain.'' ---- --
Chronic pain -- the kind that lasts longer than the injury that may have
caused it -- afflicts nearly 100 million people in the United States, more
than a third of the population, according to the Society for Neuroscience,
the world's largest organization of brain researchers.
The toll of the suffering is inexact, as are the methods used to diagnose
it. But pain that just will not go away is by far the most common
neurological disorder
-- a $100 billion-a-year burden on American society, experts say.
Most of the burden is unnecessary.
Despite major advances in the science and practice of pain control, studies
consistently show chronic problems remain misunderstood, misdiagnosed and
mistreated.
Research suggests that as many as half the nation's pain patients are not
being treated effectively.
That puts millions of people ``in a terrible bind,'' said Skip Baker,
president of a militant grassroots organization, the American Society for
Action on Pain.
Baker's Internet site (www.actiononpain.org) serves as a magnet for
desperate pain sufferers. The site includes a ``panic button'' for people
on the verge of suicide.
``I was the same way a few years ago,'' Baker said. But while not all
people can erase their pain, he learned, most can at least reduce it to
tolerable levels. ``I bought a shotgun after a doctor said nothing could be
done,'' said Baker. ``Then I saw a doctor who would help.''
Statistics offer a hint of how widespread the problems are. In the United
States alone, according to the latest surveys and estimates:
-- Chronic headaches, including migraines, affect about 45 million people.
The costs -- including lost productivity, medical expenses and the
estimated 157 million missed workdays -- add up to $50 billion annually.
-- Arthritis affects more than 40 million people, and as the population
ages over the next two decades, that number is expected to reach 60
million.
-- Low back pain strikes two-thirds of adults. Problems usually go away on
their own, but chronic pain lingers in about 15 percent of cases, leaving 7
million people partially or completely disabled.
-- At least 16,000 people die each year from gastrointestinal problems
caused by nonsteroidal anti-inflammatory drugs (NSAIDs), widely used pain
relievers such as ibuprofen and aspirin. Yet physicians and patients alike
are often reluctant to use narcotics, the most potent alternative, because
of the stigma surrounding them.
``There's still a fear of opiates,'' said Allan Basbaum, a pain expert at
the University of California at San Francisco. ``The word `morphine' scares
the hell out of people. To many patients, morphine either means death or
addiction.''
Specialists in pain control are attempting to improve standards of care,
giving rise to such organizations as the 4,000-member American Pain
Society.
Neuroscientists are piecing together the puzzle of how pain signals are
transmitted, how pain sensations affect different parts of the brain and
how chronic pain can detrimentally ``rewire'' the nervous system.
California and many other states have changed their laws to encourage more
physicians to prescribe morphine and other pain medications in doses strong
enough to be effective. New drugs have been developed, drug delivery
methods have been improved and doctors today have better strategies for
handling side effects.
And yet, despite these advances, the medical system routinely fails those
living, and dying, in pain.
Dr. Russell Portenoy, president of the American Pain Society and head of
the pain-management department at Beth Israel Medical Center in New York,
blames this failure on ``the culture of medicine as it's practiced in this
country.''
Doctors are well-trained to repair the human machine, he said, but often
fail to treat patients as human beings for whom there may be no easy
answers.
In the era of managed care and cost-conscious medicine, problems that
resist treatment and do not seem life-threatening may also get short shrift
from doctors expected to devote no more than 15 minutes to the average
patient.
``Pain patients require a lot of talking and a lot of listening,'' said
Gerald Gebhart, a pharmacologist researching new pain drugs at the
University of Iowa. That takes patience and sensitivity that not all
doctors can, or care to, muster: finding the right treatments can take
months or years of experimentation.
Often, sufferers are forced to search for doctors willing to prescribe
powerful, closely regulated narcotics, a dicey enterprise at best.
Pain patients, though they may develop a physical dependence on narcotics,
rarely become psychologically addicted and suffer negative consequences.
But doctors are still reluctant to prescribe controlled substances because
they say they do not want to attract the attention of drug-enforcement
authorities.
The California Medical Board has concluded that the fears are overblown. In
a formal policy statement, the board found ``systematic undertreatment of
chronic pain,'' which it attributed to ``low priority of pain management in
our health care system, incomplete integration of current knowledge into
medical education and clinical practice, lack of knowledge among consumers
about pain management, exaggerated fears of opioid side effects and
addiction, and fear of legal consequences when controlled substances are
used.''
The consequences for patients can be tragic: If their pain goes untreated,
it can rage out of control. New research shows that prolonged pain can
cause lasting changes in the spinal column and the brain stem, turning what
had been side streets into roaring freeways for pain signals.
``We have to educate the public that `grin and bear it' is no good,'' said
Dr. Ronald Dubner, a pain expert at the University of Maryland. ``Chronic
pain is a disease in itself. If you don't treat it, and the symptoms
continue for too long, you can do some real damage and make the problem
worse.'' ---- --
For Chris Ally, the trouble started soon after he opened his eyes after his
1971 motorcycle accident.
His left arm felt dead. No movement, no feeling. Just stabbing sensations
deep in the shoulder. The impact of his helmeted head slamming on the
pavement must have compressed the vertebrae in his upper back, damaging a
group of nerves called the brachial plexus, doctors told him.
The pain that started in his shoulder and neck intensified after he was
discharged from the hospital. By 1975, he had concluded that his damaged
left arm was pulling on the traumatized nerve root at the spinal cord.
So in December of that year, he had his arm amputated.
``It was time to get rid of it,'' said Ally, a San Francisco resident since
1987 who lives alone in a Nob Hill studio. ``It was deadweight anyway, and
I thought it would end the pain problem,'' he said. It didn't.
He no longer needed to wear a sling to keep his limp arm from flopping. His
walk was steadier. But he had sacrificed a limb and gained nothing in the
way of pain relief.
Pain is difficult to measure. Doctors use various scales, asking people to
rate their discomfort from 0 to 10, for example, or from blue to red,
signifying a range from nearly pain-free to the worst pain imaginable.
But a 10 is not the half of it for people like Ally.
``The thing I am in most danger of now,'' he said, ``is losing my mind.''
---- --
Brain imaging has offered researchers a view of what happens in the nervous
system when pain persists, showing areas of the brain involved in both the
sensation and emotional dimensions of pain.
If unrelieved, neuroscientists now say, pain can amplify the body's ability
to communicate pain signals.
Some people can override the signals temporarily through conscious effort
or powerful distraction, a phenomenon that explains why wounded soldiers
may feel little pain on the battlefield, and why injured athletes may not
feel any pain until the game is over.
But for those in full retreat, chronic pain can be a daily, 24-hour ordeal.
Ally calls them ``walkers'': rising bursts of overwhelming pain that strike
without warning, gripping him perhaps 100 times on bad days, forcing him to
get up and move around until the agony subsides.
Talking on the street one day outside his apartment, Ally stopped abruptly
and turned away, leaning into the building. Two passers-by were startled by
the suddenness of it, and seemed to consider offering help, but they
hurried past when it became clear that he was used to this.
He twisted his neck, stared into the distance, pressed his chin to his
chest. Then he reached across his chest with his right hand and pulled down
hard on the stump of his left arm.
He let out a sound, heartbreaking, impossible to describe, something
between a groan and a lament. Sweat beaded on his forehead.
During several interviews and trips to the hospital and doctor's office, he
often seemed close to tears.
He described the pain as ``a steady, strong, dull aching presence that
feels like someone has driven a hot railroad spike into my shoulder with a
hammer.''
When the walkers first come on, he said, it feels as though someone is
twisting and turning the spike, driving it in deeper -- and then ``the
spike starts getting hotter, and hotter, and hotter.''
Lately, the pain had been getting much worse.
Ally attributed this to a perverse side effect of his plan to enroll in a
clinical trial of ``an incredible new pain drug'' called ziconotide.
``Out of necessity, I have done my best to eliminate any memory of what it
felt like not to hurt all the time,'' he said. ``It's a matter of trying to
get acclimated to something I figured I could do nothing about.''
Looking forward to the drug trial seemed to put a crack in his armor.
``It's amazing what the brain does,'' he said. ``The pain starts talking:
`You will do everything I say. You will do everything you can to keep me at
bay. You will have no room for anything else.' '' He had to stop for
awhile to get his composure. Another walker.
``It's really been ugly this past couple of weeks,'' he said, finally.
``This has been the first time in many, many years I have been thinking
there may actually be a way past this.'' ---- --
As chronic pain consumes people's lives, anxiety and depression often close
in. Ally, at least, benefited from good medical care and an adequate
arsenal of drugs, which can help keep despair at bay. All too frequently,
people have to settle for a lot less.
Many patients -- suspected of faking symptoms to get drugs or time off
work, among other things
-- spend years simply trying to convince doctors that their troubles are
real. Sufferers visit doctor after doctor, their hopelessness building as
they go.
In the worst scenarios, lives fall apart.
``What's going to happen to me?'' said Jane Husman, sobbing in her Marin
County living room last fall, describing her failed marriage, her arguments
with the Social Security system, her inability to loosen the grip that her
wrecked vertebrae seem to have on her life.
After six years of trying to cope with a back problem and jolting pains in
her leg, stoicism no longer worked: her search for relief became desperate.
Since 1994, she has undergone multiple unsuccessful surgeries and tried a
surgically implanted pump, a device that delivers pain relievers to the
fluid-filled space surrounding the spinal cord.
Her latest gamble -- a second try at a pump -- didn't cause allergic
reactions like the first. Instead, it brought other troubles: numbness in
her leg that caused her to collapse and repeated emergency room visits to
change her medication. Then, early this month, she felt a change. The pain
went away. Her life returned.
``I am starting to feel like a human being again,'' she said. ---- --
Ally's latest gamble, the new drug ziconotide, is one of several
experimental medications designed to take advantage of increasingly
sophisticated knowledge about pain's multiple pathways.
A small Menlo Park company called Neurex, now a unit of Elan Corp., the
Ireland-based drugmaker, discovered the drug's active ingredient in the
venom of fish-eating sea snails, which use elaborate chemical weaponry to
stun swifter prey.
Ziconotide, now being reviewed by the Food and Drug Administration, alters
the biochemistry that transmits pain signals up the spinal cord to the
brain -- reducing the flow of electrically charged calcium atoms into nerve
cells. In some cases, the drug can apparently eliminate pain that other
treatments can't touch.
When pain goes on too long, calcium channels
-- like a river that carves a bed as it flows -- become increasingly
efficient, transmitting pain signals long after an injury has healed.
Ziconotide, designed to block the calcium channels, is said to be much more
potent than morphine, but has to be administered with care. Too little
fails to do any good. Too much can disrupt brain chemistry and cause side
effects.
To administer ziconotide, surgeons implant one end of a tube into the
spinal column and run the other end out the patient's side, where it
connects to an external pump held in place with a shoulder strap.
The amount of drug pumped through the tube is steadily increased until an
optimal dose is found. Patients who respond favorably are fitted with an
internal pump, the same device commonly used for delivering spinal
morphine. ---- --
Ally has tried nearly everything.
In 1981, he had a surgical procedure known as a rhizotomy to sever the
nerves thought to be causing his difficulties. But it accomplished little
other than leaving a long scar at the back of his neck.
He gradually stepped up his use of pain drugs, something he had resisted
for fear he would eventually start popping them ``like Cheerios.'' He also
found some relief smoking marijuana, recently shown to affect certain nerve
cells in ways similar to morphine.
Nothing really worked. Suicide began to loom as the only solution. He
stocked up long ago on the pills and paraphernalia to do the job. He
occasionally tries on the plastic bag he got from the Hemlock Society in
Canada.
Despairing, he began talking of ``checking out'' over the Labor Day weekend
last year. Then, a friend told him about ziconotide, and after an Internet
search, he contacted the manufacturer.
Neurex referred Ally to Dr. Robert Presley, a well-regarded pain specialist
with a clinic in San Jose.
Ally was accepted into the Neurex clinical trial and scheduled for surgery
to put the drug-delivery system in place. He agreed to let a reporter
observe the procedure. Presley would operate at 6 p.m. at Good Samaritan
Medical Center in San Jose.
---- --
All afternoon, during the drive from San Francisco and the preliminaries in
Presley's clinic, Ally debated the surgery.
Walkers were coming hard and fast. His anxiety was palpable.
``How do I know this will work?'' he kept asking at the clinic. ``Why do I
feel so uncertain about this?'' If someone tried to answer, he would only
ask again, over and over.
The nurse, Debbie Clay, patiently took him through the forms and standard
neurological tests. She reassured him that getting a pump implanted was no
big deal. She lifted her sweater to let him feel hers, a lump the size of a
hockey puck, just under the skin of her abdomen. But when Ally reached over
to touch it, his hand shook.
He stepped outside for some air. He smoked a couple of cigarettes. Nothing
seemed to calm him. Clay's pump was ``a lot bigger than I imagined it would
be,'' he said.
When he arrived at the hospital, a nurse brought a sedative, but when she
drew the curtain to give the shot, Ally went into a panic, yelling for
help. Nobody had told him what the shot was for.
He finally calmed down enough to allow the injection, but it had little
effect. He began to talk faster and faster, voicing his doubts about
whether he really wanted to participate in the drug trial after all.
Apparently, no one had filled him in on some details, such as the need to
keep the external pump from getting wet when he showered. ``How can I do
that?'' he demanded to know. ``I have one arm and I live alone!''
When Presley arrived at the hospital, he found Ally beside himself --
worried that a one-armed man who lived alone could not cope with the
technical aspects of an experimental drug that might not work.
Ally was on the gurney, ready to be wheeled into the surgical suite. The
hospital's patient advocate, who had come around to make sure he had
consented to the procedure, clearly had doubts.
Ally grabbed the doctor's hand. Words came in a tumble. ``Every bone in my
body is telling me not to go through with this,'' he said.
Presley tried to reason with him. He assured him that lining up a visiting
nurse or arranging for an extended hospital stay would not be a problem.
``This drug could really help you,'' Presley said.
Ally would have none of it. After listening a few more minutes, Presley
told him he was starting to worry, too.
``I'm not going to do this procedure tonight,'' Presley said. ``We can try
it again after you are comfortable that this is the right thing to do. You
haven't lost anything. We can still get the drug for you.'' ---- --
There would be no second chance for Ally.
The drugmaker was running the trial to determine side effects, and patients
experiencing extreme anxiety even before they started would skew the
results. So Ally was ineligible.
He continues to see a psychiatrist. He takes Prozac for depression and 200
milligrams of methadone daily, plus three or four Percocets, for the pain.
Every day, Ally tries to find some project to keep his mind occupied. He
volunteers as a public school tutor. He ``adopted'' a child through a
charity, traveled to Indonesia to visit her and plans to help support her
through college. He used to play one-handed keyboards in a pickup band with
friends, clowning for tips at a San Francisco cable-car turnaround.
``Excuse me if I don't wave,'' he would tell tourists.
But now, the friends have drifted off and the isolation is growing, a vast
space occupied mostly by pain. He still hopes to find a doctor willing to
try something. Anything. Otherwise, he fears the pain will win. ``I know
it has the power to kill me,'' he said, gritting his teeth, caught in
another walker.
And then, as he has done every day for 28 years, he found a way to get
through it.
Tomorrow: Dying in pain
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ABOUT THE SERIES
This series was reported and written with the cooperation of patients and
their doctors, who were consulted throughout. To read the series online,
log onto www.sfgate.com.
------------------------------------------------------------------------
CHART:
PAIN BY THE NUMBERS
Moderate to very severe pain that has lasted at least six months afflicts
9 percent of the U.S. adult population, or about 25 million
people, a new survey estimated. Its key findings:
.
-- In percent of chronic pain sufferers:
Severity
Moderate 43%
Severe 23%
Very severe 34%
.
Time had pain
6 months to a year 10%
1-5 years 34%
More than 5 years 56%
.
Type of pain
Flares up frequently 61%
Constant 39%
.
Cause:
Arthritis 37%
Back pain 27
Headaches 6
Other 25
Don't know 5
.
Medical care for pain:
Ever gone to a doctor 94
Now seeing a doctor 61
Hospitalized last 12 mos. 11
Changed doctors to find relief 22
(three times or more)
Referred to a pain specialist 22
.
Medications now taking:
Over-the-counter pain relievers 63
Prescription NSAIDs 29
Narcotic pain-relievers 16
Antidepressants 9
Trying non-medical therapy 68
.
Effect of treatment:
Pain under control 55
Pain still out of control 41
.
Impact on lifestyle/emotional state:
Problems sleeping 68
Difficulty walking 53
Can't concentrate 42
Trouble at work 34
Damaged relationships 26
Depressed 18
Feel useless 12
Turned to alcohol 10
.
.
Note: Excluding cancer-related pain.
Source: ``Chronic Pain in America: Roadblocks to Relief,'' January 1999
report, based on a survey conducted by Roper Starch Worldwide
Inc. for the American Pain Society,
American Academy of Pain Medicine and Janssen Pharmaceutica.
CHRONICLE GRAPHIC
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