You are the expert of you

“You are the expert of you,” says Krista Brecht, a nursing and chronic-pain specialist at the pain centre. “You come with a suitcase filled with things that can be helpful, like the professor who devised a way of working on a computer while lying down because sitting was too painful. We help you to identify those things and help you to become more self-reliant.”

Today Berardinucci undergoes physiotherapy regularly, meditates or relaxes in a hot bath about five times a week and makes a point of walking daily. Some relief came when surgery reduced pressure on her spinal cord. She’s also been given morphine and a drug cocktail that features a new anticonvulsant, a recent addition to the pain centre’s treatment arsenal. As her pain has become more tolerable, her interest in life has been renewed.

An early proponent of biofeedback and of morphine for noncancer pain, the pain centre is constantly in search of new tools. Anticonvulsants used to combat epilepsy and small doses of tricyclic antidepressants, for instance, have proven useful for many patients.

“Scientific research into pain,” says the centre’s Gary Bennett, “is one of the most productive areas of neurological research right now.”

The pain centre is currently setting up a one-year pilot study about the potential benefits of smoking marijuana for chronic neuropathic pain. “We do not recommend cannabis to patients, but we have had good reports from patients using it for neuropathic pain,” says Dr. Mark Ware. “We would be interested in the possibilities of cannabinoids in the management of pain once clinical trials are completed.”

According to the most recent Health Canada numbers, 786 Canadians are legally permitted to possess marijuana, of which the majority (about 600) can also grow it for their own use. Former pain centre neurosurgeon Dr. Joseph Stratford says, “I know of patients whose lives have been changed for the better by smoking marijuana.”

Encountering patients at the centre with intractable phantom-limb pain after amputation impelled one young doctor, Joel Katz, to see if administering a local anesthetic as well as a general one during surgery could prevent pain. Previously, Melzack, Katz and Terence Coderre had studied the effect on animals and discovered that local anesthetic protects the body from postsurgical pain. A general anesthetic alone does not.

Convinced by their results in both animals and people, a growing number of anesthesiologists now use local anesthetics as a preemptive strike against postsurgery pain.

When Dr. Mary Ellen Jeans saw how some of the centre’s patients were aided by acupuncture—which stimulates major nerves—she began to test a noninvasive treatment involving electricity, called transcutaneous electrical nerve stimulation (TENS). Today hundreds of people undergoing physiotherapy benefit from TENS. Patients affix electrodes to painful areas or at nerve points, then switch on a mild battery-powered electrical current from a device that can slip easily into a pocket. Milena Svraka, 52, was referred to the clinic after being mugged one night by two men, one of whom punched her in the face and dragged her across the pavement by her right arm while the other kicked her in the legs and body. She didn’t go to emergency because nothing felt broken but visited her local clinic the next day. The doctor said her muscles were strained and prescribed a few days of rest.

Back at work, Svraka couldn’t ignore the pain in her back, neck, right shoulder and arm. Determined to find out what was wrong, she saw a variety of medical practitioners, and still got no relief. When she couldn’t stand the pain any longer, she revisited the clinic, where her doctor recommended she take an indeterminate sick leave.

Svraka, who had travelled widely and rarely taken a sick day, now felt confined to the house. “Pain changes who you are. I wasn’t up to being jostled by people on the bus or metro. I was in so much pain, I just wanted to curl up and have it stop.” On a neurosurgeon’s referral, she was directed to the pain centre.

After a consultation, Svraka was put on a low-dose antidepressant, tried traction therapy—used to relieve joint compression, promote soft-tissue stretching and improve circulation—and began treatment with TENS. “I started feeling warmth returning to my arm right away,” she says. She used the arm more and began to regain the ability to turn her head from side to side—something she hadn’t been able to do in years.

She has since added everyday chores to her list of what is possible—such as stirring pots and peeling vegetables—and continues to use her TENS machine daily, affixing electrodes to her arm, neck and shoulder areas. The gentle pulse emitted releases endorphins, relaxes the surrounding muscles and seems to close the gateway to her pain.

Today her pain is a bearable three or four on a good day. “I can do things I love again, like gardening and going for walks.”

Linda Chown had successfully blacked out the memory of a bicycle accident she had at age nine, when she flew over the handlebars facefirst into a telephone pole. Her two front teeth remained embedded in the pole, and she endured four years of treatment to restore them. When, as an adult, she began suffering unrelenting face pain and severe migraines, a friend suggested she try osteopathy. While being given a facial treatment, she suddenly recalled the accident, and the shock and pain came flooding back. Later, when the nearly unbearable pain wouldn’t go away, she was referred to the pain centre.

A psychologist, Ann Gamsa, was called in and worked with Chown on many personal concerns, including her failure to remember much for a period of time after her accident. Seeing that her difficulty in expressing certain feelings was likely a factor in her pain, Gamsa helped her patient look at the accident and its aftermath, discussing the shame, anger, fear and pain it caused. The intensive work, along with medication and coping strategies, sharply reduced Chown’s suffering. It also left her grateful that not only her body but her mind was treated, too.

Today other pain centres across Canada follow the MUHC Pain Centre’s proven formula of combining physicians with varying specialists. But much remains to be done in educating the world about pain.

“There are still many practitioners who blame the patient,” says Gamsa.

“That is useless, unfair and wrong.” Despite a stack of research supporting the use of opioids such as morphine to relieve long-term pain and research that proves pain sufferers rarely become addicted, many doctors are still unaware or unconvinced.

“Montreal is light-years ahead of us in Ontario,” says anesthesiologist Dr. Ellen Thompson. “Under the rules of our College of Physicians and Surgeons, any doctor can refuse to treat a patient with opioids.”

Still, in the medical world, little is known about most forms of chronic pain. Researchers have only recently begun to study the differences between chronic pain and the passing pain that accompanies a broken arm, a heart attack or surgery. Work has also shown that unchecked pain changes the body at the cellular level, creating conditions that can continue to cause pain even after tissues have healed or disease is conquered.

As yet there is no magic bullet for the treatment of chronic pain. Researchers have been looking for safer and more effective alternatives to morphine and other related opioid analgesics for more than a century. In the past decade, they have developed a new series of drugs called delta opioid receptor agonists. “These drugs mimic the effects of chemicals already found in the body, and studies suggest they may be effective painkillers without producing morphinelike side effects,” says Steve Negus of the Harvard Medical School.

Researchers are also assessing the usefulness of new creams, exploring whether genes predict pain sensitivity and looking into theories that, down the line, could stop pain before it starts.

Says Milena Svraka: “I went to the MUHC Pain Centre to find a better treatment and what I could do to help myself. I found out that a good day can be a miracle. Simply having less pain can be a miracle.”

Chronic Pain From Hell

(The Case for Medical Marijuana)

By: Jana Christian
August 18, 2002
Published @ Marijuana.com

I’m a 55-year-old disabled baby-booming woman living in MESSachusetts (don’t ask). I live in chronic and constant excruciating pain from four ruptured herniated discs in my neck and one in my lower back. I also have Carpal Tunnel Syndrome. I’m a person who, up until three years ago never smoked pot…but I’m toking it NOW.

I had a work-related injury (also a previous neck injury from a random act of violence) and have been to Hell and back through the circuitous Workman’s Comp system (that’s a story for another talk show…but I digress). Suffice it to say that I went without income for 17 months because of miscommunications between the insurance adjuster and my neurosurgeon.

I’ve run the gamut of twisted procedures the docs put you through (without sedation ñ now the hospitals are so short-staffed, they can’t afford an anesthesiologist)…tests like CT scans, MRI’s (3 so far), and the ever-popular EMG (electro-myography). That’s a nifty torture-tool, to determine which nerves are active, and which ones are dead or paralyzed…they attached these barbaric electrodes up and down both my arms and literally shocked me to the point I was jumping up and down off the bed..my husband was horrified. I felt like Linda Blair. I never felt so much pain in my life…and they do it slowwwwwwly…withOUT Valium and Demerol…Such is life. From that test, I was diagnosed with Carpal Tunnel Syndrome, another nerve killer AND another ruptured disc at L5-S1 – geeeeeze.

Meantime, back to the local pharmacist…”Doc…whaddya got in a golf-ball sized Vicodin…HUH?”. So the docs try every narcotic known to man…so, HEY…I’m liberal..Give me more of THOSE..AND they try muscle relaxers and NSAIDS, and P.T. the list goes on. I put everything in my mouth I could find to end the pain except a gun, and THAT was next.

Finally, after ending up in a psyche unit of the local hospital with severe depression, suicidal thoughts and a flat affect (medical term for I don’t give a damn), I come to this brilliant epiphany…There IS no pill, NO treatment, NO maneuver that can help THIS pain…my doc even told me so…so why did they prescribe narcotics in the first place? I dunno. They tell me you can’t maintain chronic pain with narcotic medication, yet my doc was giving me 120 Percocets at a time ñ THIS after I had just gotten out of the psyche unit…WHAT THE ____?? And so my quest continues to STOP THIS PAIN.

I’m living on blind faith, prayer and yoga, and wondering if I’ll ever sleep through the night again. My condition is worsening according to my latest MRI two weeks ago. I’m afraid of paralysis. I have prayer and pain, and that’s about IT for the good news. Although my neurosurgeon said “Try Holy Water”…too late ñ I already have.

But if you think I suffer, you should catch my poor husband (also disabled) at the end of the day. He’s endured 12 surgeries ñ we have matching herniated discs in our necks and backs, so at least we can commiserate together. He’s been through Workman’s Comp too and all because he tried to help when he worked as a Nurse’s Aide. An Alzheimers patient attacked him, threw him across a tile shower floor, where he subsequently smashed into a tile wall going at about ten mph. Well, two surgeries later (one horribly botched) to repair crushed discs in his neck (complete with a bone plug from his hip), two shoulder replacements, two foot surgeries, two lumbar spine discectomies (another awaits), etc., the poor man has the neck of an 85-year old according to his chiropractor.

I was with him three years ago when his neuro-surgeon was once again recommending surgery at L4-5, his third lower back surgery. He had ordered a myelogram (NASTY). Well, I hope no one out there ever has to go through what he endured. Compared to my husband’s myelogram, my EMG was a walk inCentral Park. I could hear him screaming his lungs out, and still they proceeded while I waited outside the door, praying for release. When I got the run-down from my husband later, he told me two big burly orderlies held him upside down so the dye could flow up his spine. All the while, the doc could not even find a space in his spine to stick the needle, there was so much scar tissue. And then I find out he had NO anesthesia..NO Demerol and Valium like in the good old days when you had a hideous test they used to give you…oh NO…cutbacks at the hospital ñ they’d have to pay an anesthesiologist…can you imagine? What garbage. How inhumane do we have to get before something gets done?

When you live in chronic pain there’s no let up. No relief..no light at the end of the tunnel. You become the pain…it’s your only focus…”How do I stop this pain”..your whole universe revolves around the quest for relief..you lose your friends, cuz who wants to hang around two people who can’t go out most nights because they have trouble getting in and out of a car..and sit around like a couple of chickens craning their necks to pull traction on their own spines?…I can’t sit still for more than 10 minutes at a clip…I have to unclench my body constantly…God WORK with me here. AAAARRRRGGGGHHHHH!!!@@#$&***

I have but one question. I’m curious about just this ONE thing. WHEN will marijuana be legalized at least for medical purposes ñ HUH??? I’m guessing it won’t be too long now, because for the life of me, I can’t fathom how alcohol is still on the best-seller list. I mean despite all the facts pointing to its dangers and its epidemic rise in use (in the colleges big-time power drinking is killing our young hopefuls)…despite the media’s coverage of the rise in deaths and maimings across this country because of drunk-driving…ALCOHOL is still okay AND legal??. What of the people left behind in the wake of this hideous irresponsibility and carelessness…left in comas, or WORSE…in vegetative states…and what of the families that have to pick up the pieces? I shudder to imagine their pain and anguish. My grandfather was killed by a hit-and-run drunk driver who was all over the road, and I’m sickened by the devastation alcohol leaves in its wake.

Drunk driving is NOT okay, but the most you get for committing this crime is a short time in jail. I see a sharp rise in violent crimes caused by the evil alcohol inflicts on the brain. WHY can’t the Feds get it that alcohol is, in fact, the Devil (read the warning labels ñ you’re on your way to Crossbone-Frickin’ Alley)…the government puts a label on a bottle then allows it to be sold ANYway??? KNOWING that’s it’s poison…Now, color me reactionary, but is this a miscarriage of justice, or WHAT?

And then we come to cigarettes…they’re still legal too? Insurance companies drain us dry…the DEA and the FDA jump on board with their bogus regulations, all the while trying to convince the people that the war on drugs is ‘working’…HUH? They want people to quit smoking…yeah, RIGHT…that’s why the cost for Nicoderm patches is MORE than most people can afford…Meantime, Nicorette (a pack of GUM, for God’s sake) is about $40 a pack. So people keep smoking AND dying, the insurance rates keep going thru’ the roof, and the pulse goes on. And STILL, no one’s dying from marijuana. Not even close.

I’ve had eNOUGH, and I’m not staying silent one second longer . Let’s go after the REAL problem in this country…the number ONE self-inflicted wound…suicide by the bottle and cigarettes…Let’s leave marijuana alone…When’s the last time YOU read that someone got violent smoking a joint? Never…that’s when. You’d never see a pot smoker snap out in rage…Like Bill Maher said on his show…if you smoke marijuana, the worst that could happen is you might eat cookie dough. Seriously.

The point I’m trying to make (and laboriously, at that) is that throughout all of this, the only respite I found from the pain was when I lit up a joint. It definitely disconnected my brain from the pain, but I was able to function and get through my day. Halleluia for marijuana and the efficacy of its properties. Too bad so many people are in jail for possession…what a waste of jail space…(and they wanna build MORE prisons???) Too bad boneheads like Barry McCaffery don’t live in chronic pain. I bet they’d change their tunes then?

Phewwwwww!! That felt good. Thanks for listening..well, that’s my story, and I’m stickin’ to it, dammit. Sorry folks, but when I see injustice, I just cannot make my mouth behave.

© All content on this page is property of Jana Christian.

Wheelchair bound

Hello my name is Isla. I have had pain now for about 3-4 years. I have many doctors and such but still no luck in the diagnosis department. I am on trileptal, zoloft, and percocet. I have tried Kadian, but nothing. The pain is located in the lower left pelvic region and wraps around my hip to my back. The pain is so bad it has landed me in a wheelchair. I am 22 years old, am married, and have two step kids. So I guess… hello!

2001 to 2010: The Decade of Pain Control and Research

Decade of Pain Control and ResearchGlenview, IL – October 31, 2000 – The 106th U.S. Congress passed H.R. 3244 and President Clinton signed this bill into law. Title VI, Sec. 1603, provides for the “Decade of Pain Control and Research,” to begin January 1, 2001. This is only the second Congressionally declared medical decade, the first being the Decade of the Brain in the 1990s.

With this designation, brought about through the efforts of the American Academy of Pain Medicine, the American Headache Society, and the American Pain Society, it was hoped that public attention and funding for research would be focused on an under-recognized but very serious issue.

Pain lacks a significant constituency at the federal level, resulting in a lack of investment in research, education, and treatment. This Congressionally declared “Decade” will bring a much-needed focus on pain to both the public and private sectors, and is a first step in stimulating further progress in research, education and clinical management.

This is a major accomplishment for the Pain Care Coalition, and great credit is due to both Philipp M. Lippe, MD for originating the idea and to Michael Ashburn, MD for his diligent work with Senator Orrin Hatch and his staff to enact this law. Dr. Lippe serves as the Executive Medical Director for the American Academy of Pain Medicine.

The Pain Care Coalition is a national coalition that advocates for responsible pain care policies at the federal level. The Coalition was formed in 1998 by the American Academy of Pain Medicine, the American Headache Society, and the American Pain Society.

You are not alone