When “THE CURE” causes a condition to go from bad to TERRIBLE ?

Medication hard to come by for some pain sufferers

http://ravallirepublic.com/news/local/article_540ed0fe-019a-11e5-a4c8-47b86b056cd0.html

FLORENCE – In Florence, there are two men whose lives are caught up in the growing effort to rein in the illegal use of prescription painkillers.

Last year, Dr. Chris Christensen’s “cash-only” clinic was raided by federal drug agents armed with a search warrant alleging he had over-prescribed massive amounts of pain pills to his patients.

His highly publicized case has helped add a new layer of scrutiny to the challenging issue of properly managing prescription medications.

Gary Snook is a 62-year-old Bitterroot Valley man who has never found himself on the wrong side of the law.

And yet almost every time that he goes into a pharmacy to pick up the opiates he desperately needs to keep his horrific pain at bay, he feels like a criminal.

“The last time I tried to get my meds filled in Missoula, I was turned down at three different pharmacies,” Snook said. “I can’t go into an emergency room. They won’t treat me there. Yet when my pain flares, it’s so bad that I could die from a heart attack or stroke.”

Snook suffers from a relatively unknown malady called adhesive arachnoiditis that causes unbearable chronic pain.

Ironically, it struck after physicians applied a series of steroid epidurals to his back in an effort to quell the pain he suffered following surgery for a bulging disk.

The arachnoid membrane that surrounds his spinal cord was accidentally punctured. That triggered an inflammation, which in turn produced scar tissue that adhered to the nerves of his spinal cord.

Those nerves are supposed to float freely inside the spinal cord. The nerves of a person with arachnoiditis swell up like overcooked spaghetti and either stick to the inside of the canal or stick to each other. The end result is chronic pain that Snook said is beyond words.

“You’re not really in pain,” he said. “You are in agony. It feels like you’re up to your neck in boiling oil. How bad is it? It’s suicidal kind of pain.”

Snook requires high doses of narcotics to keep the pain in check. He sought out one of the most renowned intractable pain physicians in the country, Dr. Forest Tennant of West Covina, California, for treatment.

But even after he has the prescriptions in hand, Snook struggles to find a pharmacy that will fill them.

With people being charged with a felony for the possession a single pill without a prescription and pharmacies facing additional scrutiny for any unusually large dispersion of opiates, Snook worries about the day when he can’t find a pharmacist willing to help him.

“I’m not a drug addict,” he said. “I’m drug dependent. The only crime that I’ve committed is that I’m sick. I can’t really figure out this concern over opiates. The only thing that they do for me is give me pain relief.

“Sometimes I feel like I’m living in a rerun of ‘Reefer Madness,’ ” he said. “Do people really think that if I take an opiate pill that I’m going to burglarize my neighbor?”

“The people who are suffering like I am are not going to sell their pills, no matter what,” Snook said. “The people who have these problems do everything they can to ensure that there’s no diversion. They need their medication to survive one day to the next.”

Not that many years ago, Snook was a successful businessman who rarely missed a day of work due to illness. He and his brother built a successful construction company known for its ability to tackle large and complex projects.

That’s now a distant memory. He calls his life today “a true horror story.” Without a heavy dose of narcotics to keep constant pain under control, Snook is certain that he won’t survive.

“Imagine someone with stage four cancer who can’t get their meds,” Snook said. “No one would say that’s right. The pain we suffer is far worse.”

Tennant has been treating people with severe chronic pain since the 1970s.

Chronic pain is usually defined as any persistent or intermittent pain that lasts for more than three months. Many patients suffering from chronic pain can be treated with alternative methods like surgery, nerve blocks, physical rehabilitation or weak opioids.

But, Tennant said, there is a small segment of the population inflicted with incurable, extremely painful conditions that don’t respond to any intervention.

Their pain is intractable.

About a dozen states, including California, Oregon and Washington, have recognized the plight of this small group of people. Those states have passed laws that allow certified physicians to legally prescribe opioids to help those patients address that intractable pain.

“You always have these outliers in every medical diagnosis,” Tennant said. “They are the one in a thousand. You have your worst case of diabetes or worst case of migraine. Gary is one of those outliers. They are poorly understood because they are somewhat rare in the population.”

These outliers can’t be treated by a general practitioner.

“Unfortunately, today there are drug addicts who are masquerading as patients with intractable pain,” Tennant said. “Unless a doctor is well trained, those patients can fool you. If that happens, it’s understandable that the medical board will ultimately have to step in and address that issue.”

On the other hand, Tennant said many states – like Montana – don’t have well established guidelines that determine when a physician is up to the task.

“All states need to face the music and develop specialists like me,” he said. “Patients don’t understand the difference. They think any doctor should be able to help them, but they are asking for something above and beyond what’s normal. Right now, both sides are throwing arrows and neither side is right.”

“Opiates are all bad,” Tennant said. “Who really wants to have to take them? There’s really nothing good about any drugs, but someone has to prescribe them. Someone has to stock them.”

In Helena, Dr. Mark Ibsen has come under scrutiny after he began treating pain patients around 2011. Many of those had been dropped by their regular physicians.

The State Board of Medical Examiners is currently considering sanctions against Ibsen for his alleged over prescription of narcotic pain medications.

Ibsen said the process has been agonizing and costly.

“It’s been two years and there is still no ruling for me,” he said. “It’s been a hard thing for my family and my business. On the other hand, pain patients have been flocking to me because of the publicity. The word is out that I won’t abandon them.”

Ibsen said many of his patients tell him their physicians have backed away from prescribing the pain medication that they have required for years.

The former emergency room doctor said this issue isn’t confined to Montana.

With the current focus on cutting down illegal use of prescription drugs, Ibsen said physicians and pharmacists alike are “just terrified” to treat patients with chronic pain.

“I wasn’t afraid to take on some of these challenging cases,” he said. “It began as a trickle, but it became a flood. I expected that someone would step up to help, but instead everyone stepped back.

“All of a sudden you have patients out there dealing with severe pain and you can’t kick those cases down the road anymore,” Ibsen said. “There’s no one left down the road.”

Ibsen said he feels like he’s become the heir apparent to Dr. Christensen.

“That case has a certain amount of inertia to it,” he said. “I think I’m basically their next guy. They need to have some evil person to unseat.”

Terri Anderson of Hamilton believes the medical establishment needs to look elsewhere in its attempt to address the issue of pain in America.

Anderson also suffers from adhesive arachnoiditis caused by misplaced steroids in her spine.

She lost her civil engineering career with the U.S. Forest Service because of it and will rely “on high-powered opioids” for the rest of her life to address the “suicide-level pain” that’s been caused.

In her comments on the proposed national pain strategy being developed by the U.S. Department of Health and Human Services, Anderson said federal regulators and policy makers must recognize the underlying problem that’s causing the need for opioids in the first place.

“Preventable medical harm is the third leading cause of death, and I have no doubt it is one of the leading causes of disability in our country,” she wrote. “Interventional pain physicians use the fear of opioid prescribing to fuel their profitable epidural steroid injection mills.”

Anderson said she had to fight for an honest diagnosis of her ailment.

In her current position as a union representative, she said she fights for injured Forest Service workers.

“Too many employees are being coerced to submit to dangerous epidural steroid injections for back pain without knowing the risks,” she wrote. “The bodies are piling up in social media. These patients will never work again and now they are being denied opioids for their intractable pain.”

With over 100 million Americans currently suffering from chronic pain, Anderson wrote the new national pain strategy acknowledge that preventable medical harms is a major contributing factor.

“These unsustainable levels of injuries from risky interventional pain procedures will break the bank,” she wrote. “HHS/NIH must implement a strategy to first stop the bleeding as the injury rates are unsustainable to taxpayers.”

4 Responses

  1. I am one of the outliers that Dr, Tennant speaks of. I also live in California, one of the States that had, in the past, laws to protect intractable pain patients. So why has my life been taken from me by the medical establishment AGAIN? Where are those laws that protect people who live with intractable pain that doesn’t respond to conventional therapies? Where is the compassion and what happened to “FIRST, DO NO HARM”?

    I have Adhesive Arachnoiditis, RSD, and a host of other painful diagnoses. Despite losing my career in Critical Care Nursing, I strove to find a way to be of service to my community, family and friends. No matter how seemingly small my service might be, I needed to contribute to society in some way. I believe all pain patients are capable of this on different levels and in different ways IF their pain is adequately managed.

    From 1990 to 1999, I lived in debilitating pain. Eventually, the pain drove me to attempt suicide. Thankfully, I was tackled by a neighbor, hospitalized and given another chance. It just so happened, that was the year nonmalignant pain began being treated appropriately in California. I completed a month long multidisciplinary pain program and was released to a pain management Physician. My pain was managed with high doses of Opiates (after ulcers from NSAIDS, seizures from Gabapentin, and living like a zombie on antidepressants). For too many years, I was a burden to my family, friends, community, and a drain on the system. Finally, there was hope on the horizon.

    When I emerged from the fog of high dose antidepressants, My family and friends were thrilled to “have me back”. I began hydrotherapy, progressed to walking twice a day with a walker, then cane, and soon no aid. Before long I was hiking the California hills every morning. Multiple times, I traveled across Country to help my siblings and aging parents get through surgeries or illness. I became active in helping Alcoholics recover and I served as a medical advocate for my ever growing group of friends and acquaintances. My pain was ever present but managed and I worked hard, doing every alternative therapy in the books and then some. I took responsibility for my recovery just as my Physician did. We were a team.

    In 2012, soon after an LA Times article about Opioid Overdoses and without explanation, my Pain Management Doctor of twelve years began rapidly weening my medications. Perhaps he gave into heavy pressure from AIG/Chartis Workers’ Compensation, perhaps he was afraid of the DEA. I will never know. I later learned that he dropped all of his “high risk” patients (whatever that means). I was a compliant patient and never failed a drug screen or med count. I took my medications as prescribed and kept them under lock and key. I was a model patient with a good rapport with this Physician. For six months he gave me short, flippant answers when I asked why he was weaning my medications. “Evidently, people are dropping dead” is the nearest I got to an explanation. I asked for DNA testing – DENIED. I left that Dr. and found one who weened me a bit further and stopped. I am now back to where I was prior to 1999 – useless and suffering. I need a cane to ambulate (on the rare occasion that I do), I’m useless to my aging parents who need me now more than ever, and those Alcoholics that need helped? I suppose they’ll find someone else. But, putting me, my family and friends through this again is tragic and cruel. I didn’t fail because I couldn’t be cured, but the very system that I worked for has failed me, my family, my friends, and all those that I would help through my advocacy work.

    We face a scary future and I won’t lie, I’m terrified. What sane person would wish for cancer so that their pain could be managed or they’d know an end was in sight? I’m willing to bet I’m not the only one.

    • well i was looking for a arachnoiditis class action suit i was told about , because i have it of course , so your story got my attention ,, i beleive we are just a number to them big pharm comp.

  2. The problem with pain is that it is a chronic illness. And we still characterize the treatment for chronic illness in the medical model, which measures its’ effectiveness in (1) adherence and conformance to treatment, and (2) cure rates. By definition, a patient with chronic illness, who is never a ‘person,’ who perfectly adheres and conforms to a treatment protocol, will NEVER achieve the CURE. In the medical model this means one of two things: (1) The patient has failed or the physician has failed to conceptualize the appropriate treatment plan. Because the ‘patient’ has no power in this relationship, the failure to cure is ALWAYS due to a DEFICIT of some kind. Because the physician has the power and the knowledge but has no deficits, the patient must be discharged for failure to conform and the failure to cure is then a measure of patient failure, never physician failure. Then we get terms like addiction, abuse, malingering, attention seeking, etc….

    In fact neither the patient or the physician are at fault. Instead the fault lies in the model of treatment – the medical model and the system that sustains this wrongheaded approach to care of the chronically ill. NO person with chronic illness can be ‘cured’ in this model no matter their level of adherence or conformance…it is an oxymoron. It sets up failure from the first day of the patient (not person):physician (provider of the cure) relationship. The assumptions are wrong as are all of the resources and regulations that maintain this model for this population.

    Instead our focus should be placed on metrics associated with living as well as possible within family and community in spite of the failure to cure. Our metrics for success should address the integration of factors (health, education, livelihood, social, empowerment) that indicate whether the chronically ill person is able to participate in their family and community system at a level that is satisfactory to them given their health state, the support that is available and their ability to exchange goods, services and caring relationships with their community.

    If we reframe this paradigm, we can only make progress. So long as we are measuring ‘cure’ from a deficit perspective we will lose every time….the person, the family, and the community lose. Every time.

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