Pubdate: 5 April 1999
Source: San Francisco Chronicle (CA)
Copyright: 1999 San Francisco Chronicle
Contact:  http://www.sfgate.com/chronicle/
Forum: http://www.sfgate.com/conferences/
Author: Carl T. Hall, Chronicle Science Writer
Note: Part 1 of 2

LIVING IN PAIN AFFLICTION

For Chronic Pain Sufferers, Even Hope Can Hurt

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.

Note:
This series was reported and written with the cooperation of patients
and their doctors, who were consulted throughout. 
- ---
MAP posted-by: Derek Rea