Wednesday, October 19, 2005

Chronic pain patients 'born again' with spinal stimulator

magcover, originally uploaded by rsdscrpsnews.

Chronic pain patients 'born again' with spinal stimulator

By Celia Milne

ROD A'COURT OF Truro, N.S., has a bad back. In 1985, when he was only 31, he injured it while adjusting a snow plow on his truck. He ignored the burning pain in his spine and continued to work, but from that day onward, he was often in pain. After three back surgeries, he was still able to work as an electrician on heavy machinery, but in 1996, he suffered a re-injury and "things started spiralling downward, a vicious cycle of chronic pain and debilitating pain killers," he told a Halifax reporter.

Finally, in the fall of 2003, he was referred to Dr. Ivar Mendez, professor and head of the division of neurosurgery at Dalhousie University and the Queen Elizabeth II Health Science Centre, for a type of therapy called neuromodulation. It is considered to be a last resort for chronic pain.

A'Court is now the happy recipient of an implanted spinal stimulator, thanks to the team at the Neuromodulation Chronic Pain Program led by Dr. Mendez. A computer that was surgically implanted in A'Court's abdomen in April 2004, produces electrical stimulation, while an electrode sits atop his spinal cord. A remote control device allows A'Court to tailor the degree of stimulation he needs. "These impulses inhibit the pain impulses so the patient does not feel pain but rather vibration," explained Dr. Mendez. "The fibres that conduct vibration travel faster than the fibres that conduct pain."

The neuromodulation program was established eight years ago to give hope to patients struggling with chronic pain conditions such as failed back syndrome, complex regional pain syndrome, reflex sympathetic dystrophy, injuries to specific nerves or intractable occipital neuralgia.

"This is a difficult population," said Dr. Mendez. "They suffer quite a bit, and usually they are young. For some, the pain has such an impact on well-being that they'd rather die than live with the intractable chronic pain.

"Ten years ago there was nothing for them, except narcotics."

The Halifax team has done more than 100 spinal cord stimulations, the results of which have been monitored. Expectations are that about 80% of patients with spinal cord stimulation will reduce by 80% their pain medications, and some will stop altogether, said Dr. Mendez. About 25% of patients who were employed before will be able to go back after the procedure, many of them to heavy work.

The implant is a sophisticated computer about 5 cm in diameter and 6 mm thick that goes in the abdomen. The computer sends electrical impulses into the area of the body where the stimulator is, which in the past has usually been on top of the spinal cord. Now, the team is experimenting with lodging the stimulator elsewhere. "We have now started putting the stimulator on the occipital nerve itself, with very promising results," said Dr. Mendez.

The success of the program is based on three key elements, said Dr. Mendez: having a devoted team of experts, ongoing research as the program proceeds and careful screening of candidates. Before embarking on this surgery, a multidisciplinary team of experts explores all elements of the patient's treatment to date—surgeries, medication and the patient's lifestyle and support systems are taken into account. Besides Dr. Mendez, the team includes neurosurgeon Dr. Rob Brownstone, anesthesiologist Dr. Ian Beauprie, neuropsychologists Drs. Doug Cane and Mary McCarthy, and program co-ordinator Paula Chiasson. Before patients get a permanent implant, they receive a temporary computer hooked up to their back for three or four days to see if it provides relief.

"We have a good feel for who will benefit," said Dr. Mendez.

When someone does benefit, it is immensely gratifying for the doctors involved. "These people tell you they have been born again. Their facial expressions change. I feel personally very satisfied being able to make a positive impact on individuals who suffer in silence. It is incredibly satisfying for the whole team," said Dr. Mendez.

Rod A'Court calls Dr. Mendez a medical genius. He is thrilled to have this state-of-the-art device inside him that allows him to work again for the first time in 10 years—even if it does set off alarms in airports!

Original article:

Monday, October 17, 2005

"I love being alone on the water"

Hilary Lister, originally uploaded by rsdscrpsnews.

'I love being alone on the water'

By Hilary Lister for CNN
Monday, October 17, 2005; Posted: 10:16 a.m. EDT (14:16 GMT)

(CNN) -- Hilary Lister, 33, suffers from a degenerative form of the disorder 'reflex sympathetic dystrophy'. In August 2005 she became the first quadriplegic sailor to cross the English Channel -- the longest solo voyage by a quadriplegic sailor.

I started to lose the use of my legs when I was 11. I was very active as a child, playing hockey and rugby, but when I started getting sore knees I just ignored it, thinking it was growing pains. By the time I was 15 I couldn't even put one leg in front of the other.

It wasn't until about six or seven years ago that I really lost the use of my hands. Having been so active as a paraplegic -- being able to drive, swim and play the clarinet -- it was very hard to deal with.

I couldn't wash or feed myself or do any of the basic things in life. I was in very bad place where I was assessing the quality of my life and wondering whether it was worth continuing.

Then, a couple of years ago a neighbor told me about Westbere in Kent, where they take disabled people sailing. I wanted to do it immediately and the experience really has changed my life.

When I first announced that I was planning to sail across the Channel, I had no idea whether it was manageable or not, but I was frustrated that everyone around me was learning to sail and I was still a passenger.

It wasn't easy to convince people it could be done, but my family and friends were just pleased to see me excited about something again. I'd gone for a long time with nothing to talk about and life was pretty dull.

At the start of the year, I managed to get in touch with some people who could help me make it happen, and was loaned a boat by Pindar, one of my main sponsors. We adapted it to allow me to sail on my own, and I did some training in Cowes.

The sip-puff system, which allows me to control the boat, is actually built using the controls from my old wheelchair. It's basically just two plastic straws that are connected to motors. One moves the tiller, which controls your direction. The other controls the winches that adjust the sail, setting your speed. I sip or puff down each of them to sail the boat.

Matt Debicki, (of the Inventure Trust, who take severely disabled people sailing) adapted the boat for me, and did a great job.

The boat is a 26-foot Olympic Class 'Soling' that is usually sailed by thee big blokes hanging out on the rail. I needed the sails to be cut down, to make the boat manageable by just me.

Matt managed to take a few old wheelchair parts, a few yards of elastic and some pulleys and build them into a working sip-puff boat for me.

Even on the day itself Matt was down on the jetty, tinkering, -- it was that sort of operation.

The whole thing was a blast -- I loved every second, it was so exhilarating. Now I'm hoping to be able to sail round Britain. It's quite scary, but the more I talk about it the more I want to do it.

We'll need a bigger boat than the Soling, one that has somewhere to make a hot drink, and space to sleep. The boat will use sip and puff technology too, but it'll be a bit more high-tech; there will be more electronics and less elastic!

The technology has huge applications, not just for sailing but also for driving cars. I would love to be able to drive again. It makes you so much more independent. I just love being completely alone on the water. The whole point is having that complete freedom to control your own destiny.

-- For more information about Hilary Lister and the Channel Challenge visit link

Original Article:

Sunday, October 09, 2005

Walking to Fight Chronic Pain

Walking to Fight Chronic Pain
Oct. 3, 2005 - Bloomington
Josh Brogadir

Where's Dennis now?

He's probably walking through Bloomington along Route 66 despite severe spine and joint pain.

Dennis Kinch is the spokesperson for the National Pain Foundation and is walking Route 66 to bring awareness to those who live with chronic pain everyday.

Kinch said, "Probably for the rest of my life I'll just learn to live with it, and that's what I've learned, that's why I'm walking is to tell other people that suffer from this that you can still be happy. And I'm very happy, I'm just enjoying every little minute of life that I can and I'm enjoying walking as long as I can."

Kinch will walk 2400 miles from Chicago to Los Angeles.

For more information, visit National Pain Foundation


Friday, October 07, 2005

The Big Hurt

Jerome Groopman, originally uploaded by rsdscrpsnews.

From: The New Yorker (Magazine)

The Big Hurt
Issue of 2005-10-10
Posted 2005-10-03

This week in the magazine, Jerome Groopman writes about reflex sympathetic dystrophy, a type of intense chronic pain, and how a better understanding of R.S.D. might help to explain certain fundamental aspects of the nervous system. Here, with Ben Greenman, he discusses the topic.

BEN GREENMAN: What first interested you in R.S.D.?

JEROME GROOPMAN: Several people I know developed it, and they saw a number of physicians until the correct diagnosis was made. Along the way, they were given a lot of misinformation and misdiagnoses. I became intrigued. I didn’t know much about it myself. And, the more I looked into it, the more I realized that it was important. It was not that rare a condition. And thinking about pain in this new way had the potential to give us a window into a new understanding of the central nervous system.

How much is known about pain in general? In medicine, obviously, it’s managed all the time, for surgical procedures and terminal illnesses and everything in between. But pain itself seems poorly understood. Why is one of the most common conditions also one of the most elusive?

I think that, in classic medical education, pain has either been overlooked or disliked. It’s the kind of situation that is often very frustrating to doctors. The therapies are not easy or pleasing. Until recently, it did not have its own specialty. In the past, physicians would just write a prescription for a narcotic and hope that the patient found enough relief not to come back and bother them. A lot of the patients in my article, the ones suffering from R.S.D., would have entered a medical purgatory, where they were largely shunned by the medical establishment. More recently, two things have happened. There’s been increased understanding of the biology of pain, and I talk about that in the article. Also, there are very committed physicians who believe that this is an important clinical issue, and they have begun to devote themselves to the care of these patients.

One of the things about pain that you mention in the article, and that people intuitively understand, is that it’s subjective. When you take a history of a patient’s pain, you have an essentially subjective complaint. Thresholds are different, and there aren’t always visible or measurable symptoms—although, in R.S.D., there is skin-temperature increase and inflammation. The subjectivity of pain must be something that thwarts and frustrates physicians.

I just got off the phone with a close friend who fell yesterday and smashed her arm. Luckily, nothing’s broken, but she has an extraordinary pain threshold. She does not take Novocain when she goes to the dentist, and it’s not because she’s a masochist; it just doesn’t bother her that much.

So is that the kind of person who might, in theory, have a low-lying case of chronic pain?

Well, there are some pains that wouldn’t register with her. But I think that what’s interesting about R.S.D.—and what distinguishes it from any other pain syndromes—is that it can affect anyone. It’s not predicted based on people’s prior pain thresholds. For example, the woman who is the main figure in this week’s piece, whom I call Barbara, is someone who’s very athletic and active. She doesn’t have the “classic pain personality,” which physicians have portrayed in the literature: people who don’t want to work, people who are not motivated, people who are terrible complainers, people who have a little bump and think it’s the end of the world. This is a woman who has been thrown from a horse, fallen down a flight of stairs, torn her hamstring, and hardly complained about any of her injuries. Then R.S.D. came along and affected her the same way it affects everyone—it’s debilitating. So the mystery of this is that the psychological predisposition to reacting to pain doesn’t seem to be determinative.

Can you explain the difference between adaptive and maladaptive pain?

Adaptive pain is pain that assists the body in healing or protects the body. So, classically, you’ll withdraw your hand from a flame, or you’ll have surgery and the area will become inflamed and swollen and painful, and you’ll be forced to rest it, so that healing can occur. It’s either protective or it fosters the natural healing process. Maladaptive pain—and R.S.D. is a severe version of it—is essentially a neurological disease. You develop circuits in the spinal cord and in the brain which are signalling continual pain, despite the fact that there is no painful stimulus. Or you develop circuits in the spinal cord and in the brain in which peripheral nerves—nerves from your fingers or feet or legs, which normally carry innocuous or even pleasant sensations, like a breeze fluttering or a soft touch—now send signals that are interpreted in the brain as being painful. That’s maladaptive. It gives no benefit to you, and actually is extremely destructive.

What are the effects of defining something like R.S.D. as a disease, as a neurological condition in which signals are crossed or distorted?

By focussing on the authentic biology and casting it as a neurological disease, it takes away the negative stigma and elicits not only sympathy but concentrated clinical attention.

The cases cited in the article seem to involve truly excruciating pain. One woman who was a friend of Barbara’s has committed suicide, and Barbara admits that she has considered it. If someone is afflicted with R.S.D. in a foot, would amputating the foot help?

The stump would still be excruciatingly painful.

So the pain remains whether or not the limb does?


And the effect seems to be to drive people out of their minds, and out of their lives.

That’s exactly what it does. The only analogy that I can think of is being under constant torture. For people who were in concentration camps or at prisons under Saddam—those kinds of places where every day you are subjected to excruciating pain, with no guarantee that it is ever going to be alleviated—their lives would have become empty, and not only empty but torture.

Traditionally, as you say, pain has been treated with narcotics, and there are often side effects—addiction to painkillers being the most obvious. As you point out in the piece, therapies like nerve blocks are used to treat R.S.D. as it becomes better understood. Are there also cases where old, blunt, and not so efficient therapies are being abused? Or, for that matter, are there crank therapies?

It’s interesting. These people generally don’t have a very high addiction problem, because they don’t have what’s called an “addictive personality.” They have terrible pain, and they use their medicines very judiciously. In fact, a lot of them don’t even want to use their medicines, because they don’t like the side effects. So they’re not psychologically predisposed to addiction. I think there is still a tremendous need for better therapies. As the biology has become better understood, there are drugs emerging that target specific neurotransmitters, specific channels, and so on, which can help these people. The more extreme interventions, with nerve stimulators, for example, are a relatively recent development—in some cases the results are tremendous, and in others the technique doesn’t succeed. I haven’t seen a lot of crank therapies, because there is not much placebo effect here. You tend to see crank therapies proliferate where the placebo effect is profound. But the kind of pain that these patients are having is not amenable to suggestion or emotional state.

Do you have any sense of how common something like R.S.D. is? There seem to be diseases that crop up more and more often—because of the way people live now, or because of environmental conditions. Carpal tunnel is one. Is there any sense of whether R.S.D. belongs in this category?

I wrote a piece for The New Yorker a while ago about fibromyalgia, and how, historically, there have been poorly understood pain syndromes that were related to the introduction of new technology. For example, there was something called railway spine, chronic and disabling injuries sustained as a result of minor railway accidents, often, when railroads were first introduced, in the nineteenth century, and clearly that’s gone. This is different. To me, it was fascinating to trace this back to the Civil War. And I’m sure it antedated that as well. This doesn’t, to my knowledge, have any cultural or sociological overlay.

So this has probably existed with the same prevalence as long as there have been people but has only recently been better classified and understood?

That’s right. And I think there are large numbers of people who aren’t diagnosed. Some of them are fortunate, because in the acute setting, in the initial setting, if you can tolerate the pain to some degree and keep functioning, the nervous system may be able to rewire itself. Other people, unfortunately, who are not diagnosed, who have chronic R.S.D., just go from pillar to post, basically, and suffer terribly.

As this particular syndrome is better understood, is it likely that the medical community will develop a deeper understanding of larger neurological issues?

If you’re asking whether more attention to this will lead to a proliferation of diagnoses, what distinguishes this from other pain syndromes is that there are objective findings. If you look at the limb of a person with R.S.D., it’s not as though someone has carpal tunnel or someone has railway spine and they’re complaining of pain and there are no objective clinical findings. Here, there are really impressive and bizarre clinical findings. You touch the person with cotton and they’re on the ceiling. I hope that one of the consequences of the article will be that people who have this will realize they have it, and physicians like myself, and even specialists who were never formally schooled in this, will be more alert to it. It’ll be on the radar screen, so that patients can be referred to get help by specialists, and also so that the research that’s done on this condition may lead to better treatments.


Wednesday, October 05, 2005

Too young for pain

1128366100703, originally uploaded by rsdscrpsnews.

Intensive therapy program at Children's Institute helps those stricken with mystifying syndrome

Wednesday, October 05, 2005
By Joe Fahy, Pittsburgh Post-Gazette

Last week, David E. Bierer began an intense regimen that includes five hours of physical therapy every weekday, his best hope for a cure from a baffling illness.

He has often suffered severe pain during the past five years -- sometimes in his arms, sometimes in his joints or other parts of his body.

"It's been almost crippling," the 17-year-old from Parks Township in Armstrong County said.

He has had extensive medical tests to determine a cause and even tried acupuncture, which has provided some relief. But the pain has always come back, and doctors could link it to no physical cause.

Finally, in May, Dr. Paul Rosen, clinical director of rheumatology at Children's Hospital, determined that he had Reflex Neurovascular Dystrophy, a condition that causes children and adults to suffer severe, often disabling pain for reasons that are not entirely clear.

He prescribed an intensive therapy program at the Children's Institute, a pediatric rehabilitation facility in Squirrel Hill. He should complete the inpatient portion of the therapy this week, then receive follow-up outpatient care.

The inpatient program is among only a few in the nation designed to treat the illness.

About two to four children per 1,000 have the disorder, which also is known as Pain Amplification Syndrome, Complex Regional Pain Syndrome, Amplified Musculoskeletal Pain Syndrome and Reflex Sympathetic Dystrophy, said Dr. David Sherry, clinical director of rheumatology at Children's Hospital of Philadelphia.

Dr. Sherry developed the therapy regimen used at the Children's Institute and several other centers around the nation, building on the work of two other physicians, Virgil Hanson and Bram Bernstein.

Injury, stress may be causes

The pain caused by the disorder is real. Usually, it begins after an injury, and psychological stress often appears to play a role, Dr. Sherry said. Sometimes, affected areas can turn blue or red, suggesting that nerve pathways may be disrupted and may cause interference in blood flow, factors that could exacerbate the pain.

But a clear-cut cause has not been determined, he said, and the diagnosis is made from a patient's symptoms and by ruling out other causes.

Since the disorder is not well known, even among doctors, many young people, like David, spend years going from doctor to doctor and undergoing expensive medical tests, only to find that the pain fails to improve or even worsens.

"We never learned about this in medical school," said Dr. Rosen. "It's pain without a clear explanation."

Parents, too, sometimes have trouble grasping that the pain can exist even though medical tests are normal.

"How can everything be normal if my kid is dropping out of school, or dropping out of football, is socially isolated and unable to function?" is a typical reaction, Dr. Rosen said.

Dr. Sherry said he isn't sure why intensive physical therapy, continued over a period of weeks, seems to result in dramatic improvement in many children. He suggested that vigorous exercise and rubbing the affected areas over and over may desensitize them, much as massaging a scar often makes it less painful.

The therapy regimen, which lasts one to seven weeks, also calls for discontinuing pain medication and medical testing.

Adults' therapy harder

Dr. Sherry said he knew of no similar therapy program for adults, though some have used the techniques and have been helped by them. Dr. Rosen said adults with chronic pain generally respond less well to physical therapy alone and often need medication or other treatment.

Some children have the therapy as outpatients. After beginning treatment at Children's Hospital, Ryan J. Whelan, of Richland, continued therapy for months at home and at school.

Ryan, now 10 and in fourth grade at St. Ursula Catholic School in Hampton, has had a recovery so complete that he is now pain-free and able to compete on his school's cross-country team.

His pain began two years ago after he had a minor injury to his right knee at Hance Elementary School in the Pine-Richland School District. At the time, he was being bullied by two children, said his mother, Sharon A. Whelan.

The pain quickly became so great that he was taken to the emergency room, where doctors could find nothing wrong. He injured the knee again the following week and went back to the emergency room, where doctors referred the case to Dr. Rosen.

At the time, even touching the knee would cause him to scream with pain, his mother recalled. The skin from the knee down to the ankle would change from bright red to blue, then back to normal color.

"Even if the wind would blow on Ryan's knee, he would cry," she said, noting that at that point, her son was using a wheelchair.

The tears continued during the therapy, which was three times a day for about seven months. His mother would pour dry rice or popcorn over his knee or rub sponges or brushes across the skin. Sometimes, his sister Reagan, now 8, would help him with his exercises. Over time, the pain subsided.

Though he ended up repeating third grade last year because he missed so much school, his mother said she was grateful that only weeks lapsed before the condition was diagnosed.

Dr. Sherry said about nine in 10 children treated with the therapy remain pain-free after five years, a better success rate than less intensive therapy regimens, medication or surgery.

The Children's Institute began its program in April 2004 and has cared for about 30 patients.

Expanding treatment

The Children's Institute has only one child in therapy at a time, and there is a waiting list. The institute plans to open an outpatient therapy program next year, said Dr. Jamie Calabrese, the facility's medical director.

One of those on the waiting list is Christina M. Brown, 11, of Morgantown, W.Va.

A sixth-grader, Christina used to swim and run on a cross-country team, but gave up those activities because of the pain.

"If anyone touches me, it hurts," she said -- so much, she even avoids embraces from her parents, Christopher R. and Mary O. Brown. "They know it will hurt me, so they just don't hug me at all."

"Once she gets better, the first thing she'll get is a big hug," her mother said.

Her problem began in April 2003, when she sprained her left ankle, her mother said. This year, she also began having pain in her neck, shoulders and back. She has had more than 60 physical therapy visits, yet the pain has often left her in tears.

A pediatrician referred Christina to Dr. Rosen, who first saw her and diagnosed the disorder this summer.

Unlike Christina, David Bierer never gave up some activities he enjoyed, including karate and playing his guitar. But he's had to scale back.

"I used to do karate three or four nights a week, two or three hours at a time," he said. "Now, I can't even stand for the whole class."

For David, a senior at Kiski Area High School, the pain began in October 2000. While waiting for the school bus, he complained of pain in two fingers on his left hand. Later that morning, he developed severe pain in his left arm, which was cold to the touch and blue from his fingertips to above his elbow.

After a battery of tests, emergency room doctors at Children's Hospital thought he might have a blood clot, said his mother, Patricia A. Bierer. Before long, he complained of pain in other parts of his body.

Sometimes, the pain was so great that he needed to rest. But that didn't help, said his father, John Bierer. The pain "would come back in a different area -- a knee, then an ankle, then a shoulder, ricocheting like a pinball machine."

Doctors appeared baffled by the condition, Mrs. Bierer said. After he developed wrist pain early this year, he went to several doctors, one of whom referred him to Children's Hospital. There, he saw Dr. Rosen, who diagnosed Reflex Neurovascular Dystrophy.

"After five years," she said, "we were grateful to have a diagnosis."

David hopes he will recover completely, like so many other children who have had the therapy.

"I'd like to get back to where I was."

(Joe Fahy can be reached at or 412-263-1722.)

For the original article online, click:

Monday, October 03, 2005

Bone disease drug might be best hope for sufferers

hayward092805, originally uploaded by rsdscrpsnews.

(Published Wednesday, September 28, 2005 10:44:33 AM CDT)

By Chris Schultz
Gazette Staff

A drug used to treat a bone condition is holding out hope for Tera Hayward, a Big Foot High School senior who suffers from a syndrome that wracks her body with intense pain.

Pamidronate, a drug approved by the U.S. Food and Drug Administration for treating patchy osteoporosis, also has been found to have positive effects on patients suffering from Complex Regional Pain Syndrome.

The syndrome drew national attention when singer-celebrity Paula Abdul admitted to having Reflex Sympathetic Dystrophy Syndrome, another name for the condition, and having to take powerful painkillers to keep it under control.

As many as 1.3 million Americans suffer from the syndrome, which is generally described as a neurological condition that also affects surrounding tissues.

Pamidronate is used in this country to treat patchy osteoporosis, a bone-weakening disease. However, European doctors have discovered that in many cases, it can also be successfully used to treat Complex Regional Pain Syndrome.

Tera and her parents, Kim and Ken Hayward of Shopiere, hope that Pamidronate might end Tera's need for painkillers, if not end her syndrome altogether.

The drug is given intravenously over a four-hour period. It is in some ways like chemotherapy, Tera said.

Tera's physician, Timothy Lubenow of Rush University Hospital in Chicago, said that clinical tests of Pamidronate in Europe for treatment of the syndrome have been very promising.

"Tera has had a frustrating course," Lubenow said. "She did not respond to many treatments."

Direct injections of local anesthetics don't always work in Tera's case. At one point, her pain was so bad that her parents tried an electric stimulator implant on her spinal cord to block the pain. Unfortunately, the stimulator did not work, and the device was removed.

While the FDA does not recognize Pamidronate as a treatment for the syndrome, physicians are allowed "off-label" use of the medication-that is, using it to treat diseases in a way not recognized by the FDA, Lubenow said.

However, insurance companies usually provide reimbursements based on FDA approval. That means most patients have to pay full price for the drug.

Each treatment costs about $2,000, Kim said. The alternative is a morphine pump that's installed into the patient's body, she added. That costs about $100,000.

In addition to being expensive, the morphine also can affect the patient's quality of life, making the person too drowsy at times to function properly, Kim said. Worse, morphine doesn't stop any of the other symptoms of the syndrome, she added.

Lubenow, an anesthesiologist, said he's been using Pamidronate for several years to treat the pain syndrome. The drug does come with some side effects, such as fever, nausea and flu-like symptoms, he said.

The doctor said he became interested in the syndrome during his fellowship in 1986.

"I saw this as a disease looking for a specialist," he said.

Treatment of the pain involves the use of nerve blocks, which are local injections intended to shut down a specific group of pain receptors, Lubenow said. This is a type of injection in which not all physicians have adequate experience.

"Pain medicine 20 years ago was in its infancy," Lubenow said. "It requires special training."

Tera recently completed her fourth Pamidronate treatment.

Although the syndrome prevented her from attending school during her junior year, Tera said she's ready to complete her senior year attending classes at Big Foot.

For the original story online, Click:

Living with agony

gazette, originally uploaded by rsdscrpsnews.

(Published Wednesday, September 28, 2005 10:44:32 AM CDT)

By Chris Schultz
Gazette Staff

SHOPIERE-Tera Hayward, 17, has a relentless enemy.

The Big Foot High School senior is dogged by a rare condition that causes her excruciating pain.

It is pain severe enough that nerve blocks-shots of powerful local anesthetics-are needed to stop it.

Tera suffers from a condition called Complex Regional Pain Syndrome. Physicians are still not sure what causes it-and while they can mitigate its pain, there's no recognized cure.

Although she's not suffering any pain right now, Tera has to be careful not to get the slightest injury or the syndrome, and its crippling pain, will recur.

Tera was first diagnosed with the syndrome when she was 9 years old and has suffered through three bouts with the pain.

According to medical literature, the pain is considered at the top of the pain index-even higher than the pain experienced by people suffering from nonterminal cancer.

Tera has a better description.

"If you were to drain your veins of blood, fill them with lighter fluid, and then light it, you might have an idea of the pain," she said.

Still, Tera is facing up to her enemy. It kept her out of school all last year. But she made up her junior year through tutoring and summer school.

This year, Tera walked through the doors of Big Foot High School in Walworth as a senior-and she plans to complete the school year and graduate.

She wants to attend Washington University in St. Louis. Her goal is to become a physician.

"I want to be a doctor," Tera said. "I want to treat this.

"With all of the school I've missed, I could be several grades behind," Tera said.

She's not. Perhaps because her parents are teachers, she's fought hard to keep up and maybe forge a little bit ahead.

Her mother, Kim Hayward, is a science teacher at Edison Middle School in Janesville and her father, Ken Hayward, teaches vocational technology at Big Foot High School.

The Haywards live in rural Shopiere, within the Clinton School District. But Tera attends Big Foot as a transfer student.

Tera's bout with the pain syndrome started with a simple childhood accident. She picked up too much firewood and dropped a piece on her foot, breaking her toe.

Within 24 hours, Tera's foot turned purple, and it was oddly cold to the touch, Kim said.

Tera described the onset of the pain as a cold ache. It didn't stay cold for very long.

The family was living in Tennessee at the time. The doctors there made a mistake. They put Tera's foot in a cast. While that may be the right treatment for a broken bone, patients with Complex Regional Pain Syndrome should not have their limbs constricted, Kim said.

The cast caused Tera tremendous pain.

Sometimes people with the syndrome are accused of faking symptoms, Kim said. But Tera was losing sleep.

"You don't fake not sleeping," Kim said.

It was a podiatrist who first recognized Tera had the syndrome.

At a hospital in Nashville, Tera began years of treatment for an enemy that attacked her from the inside and stole her peace of mind and proper use of her legs and feet.

It took four months of treatments to finally chase the pain away.

Tera said she was in remission for two years.

"There's no cure for it. You just keep it at bay," she said.

Complex Regional Pain Syndrome lurks like a predator, waiting for another opportunity. And it can strike after even a trivial incident.

At age 11, Tera tripped over the family cat and landed on her arm. The pain came back, flooding her right arm with fire from the finger to the shoulder.

Kim said the syndrome affects the appearance of the affected area. The skin on Tera's arm turned red and the hairs stood straight up. The skin can be either very hot or cold to the touch.

But touching is not recommended.

"You can't get it wet," Tera said.

The water causes pain.

"You can't put it under the covers," she said.

Even the softest sheet causes agony.

Even noise can set off or escalate the pain, Tera said.

Again, this attack lasted between three and four months.

Pain blocks aren't the only treatment. Once the pain is controlled, the patient needs therapy because the syndrome causes muscles to wither away if they're not kept in motion.

Tera said she squeezed tennis balls, learned sign language and did a lot of writing and drawing.

The pain left for five years, but when Tera was starting high school as a freshman, she began to experience low back pain. A benign tumor was found on her spinal column.

She went through surgery at UW-Madison in October 2004 to remove the tumor. The operation was a success, but the surgery triggered another bout with the syndrome, Kim said.

The onset this time was slow, but it came on nonetheless. By April, the pain started in earnest.

Tera found starting her junior year at Big Foot High School was impossible.

"I do want to be here, but I can't be here," Tera said. "School is a privilege. It's been taken away from me."

Tera is on the 504 plan, a federal program that gives students an extra year to complete a school year. She's had tutoring and does research on the Internet to make up for lost classroom time.

"The Internet is my biggest resource," Tera said.

Tera had to complete her entire junior year during the summer. By late August, she was certain she would finish her junior year and be ready to start her senior year this fall.

Tera said Big Foot did everything it could to help her complete her junior year.

"The students and teachers are very supportive," Tera said.

By August, the Complex Regional Pain Syndrome was going into remission again.

Tera can't participate in contact sports. But she is active-when she can be.

"I can't live in a plastic bubble," Tera said. "It's just a risk you have to take."

Tera takes pain counseling, but she doesn't put much stock in it. Instead, she relies on a matter-of-fact, grit-your-teeth, fight-through-the-pain attitude.

"Everyone falls down in life, but you have to get back up," Tera said. "You have to be an advocate for yourself."

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