Category Archives: Personal Story

True stories of people who suffer from debilitating, chronic pain.

CHRONIC PAIN FROM HELL – Quatro – Fortuitous

ìAdventures in CHRONIC PAIN FROM HELLî
Still MORE Reasons for Legalizing Marijuana ñ NOW!
Dear Diary: Edition One
Author: Jana Christian

So living in chronic pain CAN be fun after all. Except for when you try to do things normal people do, and find your pain is now up to a level 10 on that stupid scale the doctors always use (how can you measure pain using an analogy like that??? Most of the time my pain and my husbandís is usually beyond that flimsy scale, but I digress)Ö.and youíre in a place that now feels like prison and CANíT GET HOME!! Iím talking about the casino at Foxwoods in Connecticut, my God Ödeliver us from there.

So itís been like 8 years since either of us has been there or ANY casino and NOW, they have 4 casinos which are about as easy to maneuver as a maze; I mean our heads were swimming with the teeming masses of people walking around with their heads up their collective buttsÖ.when youíre in Chronic Pain, sometimes you donít get out much and we were overwhelmed, to say the least.
Well, we immediately run over to the Wampum Club ( cuz when youíre broke, you look for cheap or free stuffÖI even bummed a Camel once to get me over the hump Öbut I digress too ).. and sign up, because of course, we have no real moneyÖ(just these 24 outdated chips circa 1993 which is the reason we came here in the FIRST place).

They explain all the benefits of owning one of these cards, and even give me a $5 food coupon because I happened to sign up in my birthday month. WOWWWWW! Iím somebody nowÖI have my Wampum Club card!

Next we head for the cage where they cash in the chips and all. But the chick at the window says ìwell, these chips went out with the cooling of the earthÖand have been recycled..we canít honor them, but if you take them to the cage in Casino 4, MAYBE they will.î AAAARRRRGGGHHHH@#$%&*@!!

Well, where the Hellís this magic cage? ..so we ask those helpful fellas in the brown garb that are supposed to be some kind of Indian guide, or otherÖIíd rather be lost in the Tundra with the 3 Stooges than some of these guysÖwe checked in with 3 of them and got 3 different sets of directions.

But you donít understandÖ!! weíre disabledÖhave driven 2 hours on fumes to get here just to use these discarded chips we found in the cellar ñ BURIED ñ while we were packing to moveÖwe canít walk much farther with blown discs in our necks and backs, but off we go to Casino 4Ö(mind you, by this time my husband is doing a fast burn)Öand when THAT happens, all thinking goes out the window and I become emotionally invisible and of no help, except to blabber out nonsense about what he should do (which he canít hear anyway), so I canít tell you how far we actually walked before my husband lost it and announcesÖîThatís ITÖwe are NOT leaving this place until we get some justiceÖyou mean to tell me the richest casino in the world can not offer me a lousy $24 after all the trouble we went to getting here? Are you NUTS!?îÖso off we go to another Wampum Club window so we can throw their cards in their faces along with the $5 coupon for foodÖ(I was not too thrilled with that, as my blood sugar was going down like a narc at a biker rally), but I agreed with my husband. And we were again explaining our woes to yet another employee named Linda, who used the brains God gave herÖcould see a situation about to go out of control, talked my husband downÖmade a few phone calls, and VOILAÖ

The casino manager appearsÖwalks us over to a cage, hands our chips over to the teller, gets us some real cash, and weíre setÖthat simple, and all because a few people had their eyes open while most others are members of the walking dead and donít even know it, bless their hearts. Watch out who you ask directions ofÖthey might be more lost than you..You could end up in Tel AvivÖfood for thought.

But it gets betterÖafter they finally DID honor our chips, we took about Ω hour to A) lose all the cash at the quarter slotsÖB) find another 3 ëguidesí to steer us off track on the way back to our misplaced car, which, by the way, was parked in the Handicap parking lot outside and they had directed us to the indoor garage (see we werenít even aware of the layout at Foxwoods, and felt like we had walked in circles for hours), the upshot of which is that thoí disabled and in excruciating pain, we walked almost the whole perimeter of that gigantic edifice called Foxwoods until I recognized our parking lot.

But by that time, we both needed EMS to resuscitate us, but I digress AGAIN. We made it homeÖtook two of everything, and called NO one in the morning. It was the most fun either of us has had in a LONG time.

I guess in the final analysis, we always were our own best guides to begin with. There were only 2 sets of footprints, but we know the truth. We were amazed at how little there is to miss ëout thereí.

Since the 9/11 massacre, we find peace in little things like just being able to wake up and cook a good breakfast, PAIN and all. I figure life is too short and fragile to sweat the small stuff, so I am reborn on this dayÖ.but enough about feelings.

Anyway dear diaryÖgotta work on my bookÖand get some shut-eye. I leave you with this little ditty, where there is medical weed, there is help inDEED.

angels_inc”

CHRONIC PAIN FROM HELL!! (Third Edition)

(Still MORE Reasons for Legalization of Medical Marijuana)

Author: Jana Christian
Midnight(insomnia)

I watched Real Time with Bill Maher last night, and once again, his comments on marijuana just blew me away!

One guest was Jesse Ventura, the former Governor ofMinnesota. What a breath of fresh air. They were going ’round and ’round on this issue of WHY the government can’t get its head out of its butt when it comes to legalization. Well, Jesse made the most sense when he said that the only reason they won’t legalize marijuana is because the drug companies with all their high-priced bogus man-made drugs (that half of us don’t need in the FIRST place) keep oiling the palms of the politicians to keep pot under wraps and portray it as the Devil, when we all know differently. Well, DUHHH. And you can grow a pot plant in your own backyard for nothing. And wouldn’t the bottom of the ‘war on drugs’ fall out then?

What an unforgivable waste of our money is this so-called war on drugs. Who won? NOBODY. Couldn’t this money be better-spent on feeding our own starving families in THIS country. And speaking of wars, Bush wants HOW much to keep the ball rolling inIraq?? But that’s a topic for the Smirking Chimp.com.

Meantime, in my attempt to educate the powers that be on Chronic Pain, this last Tuesday, my husband re-visited his surgeon. Hasn’t been to see him in 3 years. Three years ago, this surgeon had scheduled Don for surgery (see “Chronic Pain from Hell” (the Case for Medical Marijuana), but subsequently my husband canceled it after his doctor told him “If I were you, I wouldn’t let ME operate on you”, and gave him a 50-50 chance of paralysis.

Tuesday, x-rays were re-taken, and the doc just shook his head, and almost started crying. My husband’s neck looks like so many strands of spaghetti Ò no symmetry to it, but his lower spine has virtually disintegrated. The doctor shook his head and said “I can’t imagine how you’re still walking”. So he ordered new MRI’s on neck and lumbar spine and referred him to yet another Pain Clinic.

Two days later he gets a call from the doctor who informs him that his Workman’s Comp insurance company has gone bankrupt, and my hubby’s case has been placed in some pool of funds run by the state..oh GOD, what next?? Not another state agency. And here’s the good part. They won’t approve the MRI’s until my husband undergoes an IME (Independent Medical Exam), one of the state’s choosing..well, all I can say is AAAAAAAAAAAAAAAARRRRRGGGHHH@!#%$**&/. For God’s sake, he’s been out of work for 12 years and has undergone 12 surgeries. What do they want from him?

This means that the excruciating pain my husband’s in (the reason he went back to the surgeon in the first place), will just have to wait, while we wait for approval.

All of this is bad enough, but he has NO medication, and can’t GET any ’til he can get to the Pain Clinic. And to top it all off, we are out of marijuana, because we’re both on disability and can’t afford it. And WHY, because the damn government is corrupt and has no soul. And now I have to stop, because the crushed discs in my own neck are howling at the moon. More later.

Jana

PS Hey, Dr. Zombie!

PPS We did get some medication from a Guardian Angel friend of ours, so my hubby is sleeping like a baby. Beats Valium.

Partners in Pain

By: Jana Christian

I met my husband, Don, over the phone six and a half years ago. At the time, I was living with a woman who was an old friend of Don’s family. Don had called this woman and left several messages. I subsequently called him back to tell him that his friend was out of town. We talked and talked. I read him my poetry. We shared our histories. We cried. We ended up talking for four hours and made arrangements to meet for breakfast the next morning.

We met, we clicked..we meshed; we had so much in common ñ chief among those things was the fact that we had matching injuries. Ruptured discs at C5-6,C4-5, C3-4, C2-4, and L5-S1. Also, Carpal Tunnel Syndrome and lots of chronic pain to boot. A match made in Heaven.

We had found our soulmate; someone to identify with, and we married thirty-five days later. Call me crazy, but that’s the way it happened. We couldn’t have found each other soon enough. Both of us were in a self-destruct mode, due to years of chronic pain, and had pretty much given up on hope.

My husband went through six doctors and two unnecessary surgeries before I met him — only to finally find out he had the largest herniated disc at L5-S1 that the doc had ever seen. At first, this last doctor accused Don of just looking for pain killers until he finally did an MRI and apologized to him with tears in his eyes..told Don he couldn’t believe he was even walking with such a large ruptured disc. His first surgery was at age 27. Since then, it’s been a never-ending saga of repeated surgeries, accusatory doctors and staff in emergency rooms..on-going agonizing pain with no relief, and finally acceptance. People just can’t understand. It’s not their fault..too bad they can’t walk in our shoes.

It is SO debilitating living this existence of constant pain 24/7 with another person suffering the same fate. Unless you have it, there’s no clear-cut way of explaining the way it alters your life. But I’ll try.

When someone says they’re in pain, just because they happen to be coiffed and buffed on the outside, does NOT mean you could ever get in touch with the pain going on inside their bodies. I wish people would have more empathy, but how could anyone know, if they’ve never experienced it?

I’m exhausted from feeling as if I have to explain my every activity to people who tell me “Gee, you look fine”. I tell them “You wanna see my X-rays”? That usually does it. One day out of seven you just might get a spurt of actual energy (don’t blow it), if you’re lucky. You race around and try to do it ALL, because for five days, your back and upper body have been useless, and now you feel guilty for not doing enough around the house.

Last week my husband and I cleaned six small windows. With his neck and shoulders (two shoulder replacement surgeries, two discectomies in his neck, and eight other surgeries), and my neck and arms (two Carpal Tunnel release surgeries last year), we had to hang low for three days, we were so exhausted.

I’ve been studying chronic pain for quite a while. I got a kick out of discovering the 3 “s’s” of chronic pain. SADNESS, SLEEPLESSNESS, and SUFFERING. I say they should add another ‘s’ for SUICIDE. Not much to look forward to.

My husband kills me. He drags his body around and tries to always be productive. He pushes himself to the point that it makes me crazy because I worry about his health, and angry, because who has to listen to him groan the next day? You guessed it. But as he likes to say, “I’m not giving in to this”. He works like a dog on our yard and garden, practically drags his hind legs, but dammit, he gets it done. He’s been such an inspiration to me, when I want to give up.

For months when both my neck and back were ‘out’, I couldn’t sit, I couldn’t bend, NOR lie down and couldn’t sleep for five nights in a row sometimes and was totally losing it. I took to my bed and wanted never to emerge. If not for Don, I might still be there. Pity party’s over.

Meantime, now instead of sleeping and watching the world go by, I try to make my fingers do the talking, tho’ I can’t type for long periods or very fast (used to do 90 WPM), but doing it piecemeal is better than not at all. I’ve started yoga, because the chronic pain manuals tell you to stay in constant motion, and if I’m not in constant motion, I can only think and feel PAIN, so that’s a new behavior I’ve been doing.

We are blessed with a TENS (Transdermal Electro-Neuro Stimulator) which gives some minor temporary relief, but we maintain our constant pain with prayer and marijuana (WHEN or IF we can afford to buy it) PRIMARILY (see attached article written for Marijuana.com). We used to use alcohol for pain, only to produce more pain in other areas..so that’s out. Then there were narcotics from our doctors..Closest stuff to heroin you can get, and guess what?? No relief, so what’s the point? Gives you an idea as to the intensity of the pain.

We’ve been to physical therapy with maybe some temporary relief..done the pain clinics, been on the traction table, been through surgery, had injections, heat, pain rubs, Reiki, not to mention hypnosis, all with few, if any, results. My plan at first was to just give up if there’s no relief. But today, I know there are people out there with a MUCH worse situation than my own. I’m working on acceptance now..acceptance that my condition IS WHAT IT IS. And acceptance of the fact that I’m my own best doctor, that my pain WILL get worse, that surgery is not an option I’m willing to try on my neck just now after the nightmare stories I’ve heard (the worst ones from my husband), and acceptance that I’m not getting any younger. With these truths in mind, I’m trying to heal from the inside out starting with my attitude. All I have is today, so I better not waste a minute of it.

Today we’re watching the birds in our back yard. It’s an activity which produces much relaxation, and a positive attitude. I’ve been making them my focus, as it’s an activity I can say is very productive. I try to rise each morning with the best outlook I can muster. Some days are a wash. Other days, I actually love life. I’m practicing an attitude of gratitude as I battle my way to freedom from pain..

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

CHRONIC PAIN FROM HELL TOO!!!

A Chronicle in Pain Management

We’re BACKKK!! My husband and I ñ just sittiní here listening to Barry Whiteís version of Basketball Jones, and laughing our butts off. And smoking a fat one for the first time in a long time..and it suddenly occurred to meÖ

Maybe if I document our lives ( we both live in chronic pain 24/7 from ruptured neck discs, multiple surgeries, Carpal Tunnel Syndrome and now migraine headachesÖsee ìChronic Pain From HELL!!î in Activism) ñ maybe if we share how we manage our pain with marijuana, we could make a difference on pathing a way to Washington with our ideas and findings, which weíve been documenting for months.

Iím speaking out for the legalization of Medical Marijuana for people in chronic pain..itís a harmless herb that God himself put on this Earth for our consumptionÖ who are we to say him no?? (lol)

As a Medical Assistant and EMT, and I know MUCH about anatomyÖnot to mention physiology, I guess it is all up to me. Weíve compared our vital signs (i.e. blood pressure, pulse, etc.) on days when we were drinking to manage our pain, versus those days when we were fortunate enough to have weedÖjust two days ago, my husbandís B.P. was 170/118 ñ VERY high..

Then yesterday we got our ëmedicineíÖtwo hours after smoking, my husbandís B.P. had dropped dramatically to 124/86ÖIt blew us awayÖthus this article.

Iíve got my answers. Now to get the Feds to listen, thatís another uphill battle. But I think Iím ready for itÖdespite my pain, itís time to move.

ìITíS CHRONIC PAIN, OR CHRONIC BROWNIESî

Weíve tried Percocet
But to my regret,
It DID NOT do the trick.

Iíve done Demerol,
But LISTEN, yíall
It made my eyes go thick.

And every narcotic known to man,
Can never do what good weed can.
But scripted drugs are A-ok?
Thoí they only take your life away?

Cigarettes can STILL be sold?
Even thoí the truth has been fortold.
Whoís high in the DEA I wonder.
The war on drugs has been a blunder.

And alcohol is legal too!!
Donít you cry for the harm that it can do?
I know Iíve cried one thousand tears..
I try to speak, but no one hears.

Listen folks, itís clear to me.
In pot, there is no misery.
Compared to all those medications,
MaryJaneís the ONLY indication.

Donít have to spend my day in pain,
Cuz pot re-routes my hurting brain.
I have more fun, more energy.
I thank the Lord that I can see.

OOOPS..there I go again with my rhyming old selfÖbut you get the picture, I hope..Suffice it to say, (gotta stop typing nowÖthe broken neck, donítcha knowÖ)..my husband and I have experimented with all the ëlegalí narcotics and with alcohol, and the damage done to ourselves and others in chronic pain that we know, should tell the taleÖ

Weíre speaking out and would like any advice on exactly who to contactÖprobably our state senator, but weíll be in touch..
Rhythmically Yours,

Jana Christian, Songwriter
ìANGELíS INKî
angelsink_jana@yahoo.com

Abbie – Chronic Low Back Pain


On January of 1991, at the age of 24, I was in a car accident that changed my life. A few months after the accident a MRI showed I had a L5-S1 herniated disc with a displacement of the S1 nerve root. I had a lot of pain in my back and down my left leg. Chiropractic treatments and rest did very little to alleviate my pain. Because of leg pain and weakness I had a microscopic laminectomy and discectomy. A few days after that operation the pain that had subsided came back and even worsened. I tried physical therapy for months with no improvement and finally a CT confirmed that the disc herniated again.

At this point I had to move back to my father’s home in Israel (at the age of seven [1974] my parents moved us all to a Kibbutz in Israel). I was hospitalized for three weeks for conservative treatment that included steroid injections (not in the back but IM), confinement to bed, PT, and traction. It was a horrible experience. I felt completely helpless because I could not really move, so any thing I wanted or needed had to be brought to me I could no longer be an independent person. The hospital was terrible I shared a room with two other women and I shared a bathroom and shower with five other patients. There was no toilet paper in the bathroom I had to bring my own. On a good days, I got up early to take a shower right after it was cleaned and before anyone else used it.

The conservative treatments did not work and I had my second laminectomy discectomy in June of 92. I was pain free for a few months when slowly the symptoms came back. The orthopedic surgeon could not determine from a new CT whether scar tissue was the culprit or new or old disc tissue was causing all the symptoms. I was in and out of the emergency room a lot for the pain, since my doctors never gave me adequate painkillers.

My orthopedic surgeon gave me a treatment of several trigger point injections once a week for three weeks that gave me minimal relief. I went to another hospital for acupuncture. The treatments were done in the hospital basement, and along with 7 to 10 other patients the doctor went from each one and inserted the needles. After 15 or 20 minutes you would hear patients beg the nurse to come and take the needles out because they were hurting. It was ridiculous and no wonder it never worked.

I started to look for a really good doctor, one that I chose and not one that would be assigned to me. I made appointments with doctors in their private practice (Israel has socialized medicine in which doctors are assigned patients based on availability). I saw one doctor in his office and he suggested another operation maybe even fusion once I told him that I have no money to do it privately and needed to go through the ‘system’ he changed his tune. I tried to see him at the hospital clinic (he was recommended to me as the best neurosurgeon in the area) and he put me in a ridiculous ‘walking’ body cast. This cast started under my arms and ended at my knees, and I was supposed to walk around in it for 10 days. They put me in this body cast in July (93) one of the hottest months in Israel. I still canít believe I agreed to this I was still naive and with each new treatment I believed that I was going to get better. When the ten days were up I could not walk and I was ready to kill myself because of the pain.

During these years my family physician and the nurse practitioner only gave me 1 percodan a day, 10 percodan at a time, and I had to come back every ten days to get some more. I remember waiting all day dieing of pain until it was time to take the percodan. I still cannot believe I got through those years like that. I guess that because of the poor pain management I was unable to do any thing else but lie in bed and read books all day long.

After the body cast I never went back to that doctor (big surprise). I had another 2 CTs, a mylogram, 2 more MRIs, and two bone scans and still no one could tell me what was wrong. Of course since after the second operation the doctors insinuated that it was all in my head. I had no support from most of my family. My sister and twin brother were angry that I was so dependent on my father and believed that I was faking so that I could keep on living with him. And my stepsister and brother could not understand what I was going through and believed that I need to ignore the pain (as if I could) and get up and get on with your life and everything will be fine. My mother did not know what to believe. My father, despite everyone in the family telling him otherwise, was always there for me. It was hard to be dependent at 24 (and the next 5 years) on my 68-year-old father. It was very humiliating to endure people’s stares when he tied my shoes or carried the groceries and so on. But finally we got a break.

We found a very good orthopedic surgeon about two hours away. My uncle in Miami recommended him to us, since the doctor worked for the Miami Dolphins and now moved back to Israel. He preformed a L4-S1 fusion with 4 screws and 3 rods. At my request a neurosurgeon (a colleague of the ortho dr) decompressed the S1 nerve root.

Waking up from this operation was hard to say the least. The pain hit me like a freight train, and I could hardly breath. I was hooked up to a PCA unit but that was not enough, and I got supplemental morphine and phenergen. I pushed the PCA button every 5 minutes because if I didn’t my back would spasm up and the pain would be too much to bear. At 4 in the morning the unit ran out of morphine.

My mother who was at my side told the nurse that it was empty, and she replied that it was the anesthesiologistís, on call, responsibility to replenish the unit. However, the anesthesiologist was in surgery and would not be out for a long time. My mother then asked if the doctor could prescribe something instead of the PAC for now. The nurse replied that she was not going to wake up the doctor for something like that. I had to wait until 8 for one of the anasthiologits to come and refill the unit. I was in agony tears were poring down my face I begged for someone to help me. I was weak and disoriented from the anesthesiology and because of the operation I could not scream so my pleads went unnoticed.

I was release on my 28th birthday. An ambulance took me to the kibbutz rehabilitation unit. There I met the male nurse on duty, little did either of us know that we would be married a year later!! I was confined to bed and was allowed to get up twice a day this lasted for three months. I got through it with a lot of support from friend, my father of course and this kind male nurse (Neal) who kept asking me if I want a cup of tea and I always said yes. When I was released we started dating, and married in 1995. I always wanted to return the States and we moved two years later.

After the third operation I needed very little pain medication such as vicodin, but gradually over the years my pain became stronger and I needed to take percocet once the twice then three and four times a day. I kept hearing reports about chronic pain and I read an article in the Times about chronic pain and realized that that was I. But I still looked for a treatment that would cure me, and went through the typical injections, PT, and medications. During this time I went back to college part time and worked teaching Hebrew two hours a day twice a week. Once I realized that the CP was not going away I started searching for a PM doctor.

I started treatment at a PM clinic last November. The doctor said that they had many different medications and treatments we could try. I started to take neurontin 300mgs x3 a day then we gradually increased the dosage until I got to 1200mg 3x a day. I was ordered to stop taking the percocet, and I gradually did. At the next visit I got a nerve block injection and pamalor 75 mg to add to the regime. I was in a lot of pain and nothing was working I called their service many times and all they did was up the Pamalor, and when I told them that that is not enough I need a stronger medication to help me the doctor on call replied that if I was in that much pain I should go to the ER. So I jumped through their hoops and went to the ER and spent half a day there.

At my next appointment we talked to our doctor and explained to her that the medications I am taking help with the burning but not the rest of my pain, which is considerably stronger. She replied that she does not practice that kind of PM that she does not prescribe narcotics. So my husband stated, “so you don’t really care about my wife’s pain” the doctor contorted “yes I care, I would not be working in PM if I did not care” so again we tried to explain what I needed. At one point my husband asked if she was only going to treat only a part of the pain and not all of it. And that convinced her to put me on 20mg oxycontin 3x a day. She made me sign a contract with two terms that I see an orthopedic surgeon (about removal or the hardware that she thinks is pressing on the S1 nerve) and another pain management doctor to consult with about the Spinal Cord Stimulator and make an appointment with her in two weeks.

At our last scheduled appointment I was late because I was coming from the other PM doctorís office she wanted mo to see. As I was coming into her office I met her in the hallway and she told me not to bother going in because she will not see me. I begged her to understand why I was late since both her clinic and the other PM clinic were over 1.5 ñ 2 hours away from my house and I wasnít very mobile as it is. But she just stood there drunk with her power and in a bitchy way said no.

I was in tears as my husband drove us home. Instead of going home I asked that he take me to my PCP. I told her what had happened (mind you I did not have an appointment and it was 4:30 when I got there) she could not believe it and we decided that I would not go back to that PM doctor. Now my PCP wants me to find a new PM doctor while she continues to prescribe the medications I was given.

I have decided that I am not going to have another operation even though it might be true that the S1 nerve is compressed (this is dangerous since one might loose urinary control ect.). I canít deal with another operation. For now I will continue with what I have with some adjustments perhaps.

59-year-old grandmother had been pummelled by pain in her whole body for years.

By the time Marilyn Bard finished telling her story at Montreal’s MUHC Pain Centre, the desk before her was littered with wet tissues. The 59-year-old grandmother had been pummelled by pain in her whole body for years. Simple tasks such as hanging the wash caused sharp pain to run along her arms. Her neck and head throbbed with an intense pain she never thought possible. When she visited her doctor, he told her there was nothing wrong. But the day she couldn’t even hold her newborn grandson in her arms, she knew there was.

Bard sought a second and third opinion. The final diagnosis: rheumatoid arthritis, psoriatic arthritis, fibromyalgia and occipital neuralgia. The neuralgia required two separate surgeries to remove nerves from the back of her head. Doctors treated her arthritis with cortisone shots and painkillers. But the pain in her joints was never eradicated, and the neck pain returned.

Visibly, it took a heavy toll. “I looked like my grandmother!” Bard says. Worse, the chronic pain was threatening her 19-year marriage. Her husband believed she could conquer the pain if she tried hard enough and had to shoulder everyday chores.

Finally, in 1999, Bard’s neurologist convinced her to visit the MUHC Pain Centre, so called because of its affiliation with the McGill University Health Centre. Founded by doctors Ronald Melzack, Joseph Stratford and Mary Ellen Jeans, it has treated hundreds of patients successfully since opening its doors in 1974.

With low expectations, Bard joined the centre’s group-therapy class and for the first time talked to others who understood her pain and offered strategies to deal with it. To her surprise, she began feeling better right away—and it lasted. She learned how to relax by releasing tension in each part of her body, starting with her toes then progressing upward, and she was switched to more effective painkillers. Her pain was ranked nine out of ten—ten being the most painful—when she began at the centre. Now, on good days, it barely registers a one.

“When I visited my three grandchildren in Calgary not long ago,” says Bard, “I was lifting them up, swinging them around and running with them. I was doing things I’d never done before!” Chronic pain—any recurring or persistent pain—can last months or a lifetime. Surveys show about 2.5 million Canadians suffer moderate to severe chronic pain. In the United States it disables to some degree some 86 million people, at an annual cost of $90 billion to industry and business. “Persistent pain is so destructive,” says Melzack. “It causes damage to those who suffer from it and to everyone around them, too.”

Melzack’s fascination with pain began in his early 20s while working on his Ph.D. in psychology at McGill. Immediately after graduating, he spent three years at a multidisciplinary pain clinic in Oregon. There, he began work on a questionnaire based on the rich vocabulary of one of his early patients, whose left leg had been amputated but whose “phantom” limb caused her agony. Melzack’s pain questionnaire was devised to determine a patient’s perceptions of the intensity of pain, and is now used at the pain centre as well as at hospitals worldwide. Leaving Oregon, Melzack travelled to Europe for two years of research and was then invited to the Massachusetts Institute of Technology, where he met physiologist Patrick Wall. Together they developed a new theory of pain that overturned a 300-year-old understanding of how pain works.

“The Gate Control Theory,” which they published in 1965, describes how nerve gates at each level of the spine’s vertebrae either let pain pass through or damp it down. A person’s thoughts, expectations, outside stimuli such as rubbing a sore spot and even cultural conditioning, they suggested, can reduce the pain signal.

Back in Montreal, Melzack corralled experts from different disciplines—anesthesiology, psychology, neurosurgery and nursing—and cofounded the pain centre, basing its treatments on a multidisciplinary approach with specialists collaborating on a variety of aids and innovative treatments. All shared the common belief that the pain anyone feels is real.

For Catherine Berardinucci, 44, of St. Eustache, Que., the pain began after an accident on a water slide. As she readied her inner tube to head down the slide, a man behind her gave it an impatient shove. To her horror, she heard loud cracking noises from her neck as she landed, spinefirst, at the bottom of the chute. Rushed to hospital, she was diagnosed with severe whiplash.

Berardinucci was sent home in a neck brace. After two weeks the only reminder of the incident was tingling fingertips. Then, three years later, unbearable pain suddenly gripped both her arms. Tenosynovitis was diagnosed. Yet the more she read, the more certain Berardinucci was that she didn’t have the condition.

After months of pain and little progress, she was finally given a magnetic resonance imaging test.

It revealed permanent spinal-cord damage as a result of the accident. She learned that surgery to improve her range of movements could leave her a quadriplegic, but she decided to take the risk. Depressed, taking morphine and antidepressants, she didn’t want to go anywhere, do anything.

While she awaited surgery, her family doctor referred her to the MUHC Pain Centre, where she described the accident and her hitherto unsuccessful treatments. The centre decided it could help. Berardinucci was given nutritional information and relaxation techniques, and at group therapy she learned strategies to help manage her pain by getting out of bed and doing one activity—however small —each day. Doctors tried various medications, seeking the right fit. At every step, she was encouraged by the nurturing atmosphere that permeates the centre.

BY ALISON RAMSEY

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.”