Becky McCandless: ‘A Bright Light in a Dark World’

By Pat Anson, PNN Editor

Pain sufferers and patient advocates are mourning the loss of a trusted friend and colleague, Rebecca “Becky” McCandless. Becky passed away on January 30 at a hospice facility in Bloomington, Indiana after a brief battle with cancer. She was 59 years old.

Becky developed Arachnoiditis – a chronic and progressive inflammation of spinal nerves – after a botched epidural steroid injection in 2005. Her intractable pain became so intense that Becky considered suicide, until she found a doctor willing to prescribe high dose opioids.

Becky soon became an advocate for herself and others in the Arachnoiditis community. In 2015, she wrote one of the first guest columns to appear in PNN, defending the use of opioids and taking the CDC to task for its soon-to-be-released opioid prescribing guideline.

Becky said opioids had saved her life:

BECKY MCCANDLESS

“The CDC is clueless because they are recommending a cap on the daily dosages. How can they estimate a person’s pain levels? Everyone is different, and there are genetic differences and high metabolizers who need higher doses to control their pain. If that happens, my pain will be uncontrolled again, and I worry about my future. 

Is this fair to the thousands or even millions of pain patients who may suffer from Arachnoiditis, who have been harmed by the medical community and incompetence of the Food and Drug Administration? Even though the FDA issued a warning on steroids used for back pain, doctors are ignoring it and not telling their patients. We were harmed and now we suffer because doctors are turning us away.”

“Becky was a dear friend who overcame many trials, and she never gave up when she was handed great difficulties,” remembers Terri Anderson, a fellow Arachnoiditis sufferer who met and became friends with Becky on Facebook. “Becky was a bright light in a dark world. Her life was cut way too short.  I will miss her uplifting texts and phone calls, but I will always cherish her memory.” 

Becky was still mourning the recent deaths of her mother and sister when she learned she had an aggressive form of lung cancer. 

“Despite suffering tragic losses and incurable pain, Becky always made plans for better days ahead.  She encouraged others in our Arachnoiditis community and challenged misguided individuals on the topic of intractable pain with her Tweets and emails,” Anderson said.  

“What do you say about one of your dearest friends in the world, when you have shared with them both the daily challenges and physical pain of a devastating, chronic pain disease for so many years?” asks Denise Molohon, another Arachnoiditis sufferer. 

“Becky showed incredible strength and courage. She was a fighter. She rose back up each and every time, opening up the discussion and bringing suicide into the light, just as she had done with her own chronic pain disease. As a pain patient advocate, she helped multiple people, physicians, patients and organizations.” 

Becky and Molohon’s advocacy for Arachnoiditis led Vice President Mike Pence – then governor of Indiana – to proclaim a week in July 2015 as Arachnoiditis Awareness Week.  

After so many years dealing with the ravages of Arachnoiditis, Molohon says Becky’s diagnosis with late-stage cancer came as a shock.  

“Becky faced it like she had every major challenge, with the utmost bravery, a positive outlook and a fighting attitude,” Molohon said. “Becky was known for her huge heart. There wasn’t a single person or animal she wouldn’t help, didn’t matter the situation or problem. If she couldn’t find a way, she’d find someone who could. I will miss her huge smile, her contagious laugh and most of all her kind, generous heart.”

Becky was just days away from her 60th birthday when she died.

In lieu of flowers, memorial contributions can be sent in honor of Becky to the Adhesive Arachnoiditis Research & Education Project or to the Sycamore Land Trust.  Condolences to the McCandless family can be made here.

Opioids, Off-Label Prescribing and the Road Not Taken

By Lynn Kivell Ashcraft, Guest Columnist

So much of the conversation about the use of opioids and other medications to treat various conditions has made it sound like doctors are doing something wrong when they utilize a treatment in an off-label fashion. 

Off-label prescribing is not a crime. The federal Agency for Healthcare Research and Quality (AHRQ) estimates that 1 in 5, or 20 percent, of all prescriptions are written for off-label use.

In fact, off-label use of a drug often represents the standard of care. The Food and Drug Administration never intended for its drug approval and labeling process to be the sole determining factor in how a drug is to be used in a clinical setting. 

It is left to physicians themselves to determine the ultimate clinical utility of pharmaceuticals, biologicals and medical devices in treating their patients.

Epidural Steroid Injections Are Off-Label

Some off-label use, however, is controversial. Many accepted protocols for treating back and neck pain include the use of epidural steroid injections (ESIs), despite a lack of rigorous supporting clinical evidence. As many as 9 million ESIs are performed in the U.S annually, yet few patients are told the injections are an off-label use of both the medication (corticosteroids) and the route of administration (an injection into the epidural space of the spine).

In 2014, after hearing about serious neurological problems in patients who received ESIs, the FDA required a label warning that injections of corticosteroids into the epidural space may result in rare but serious neurological events, including "loss of vision, stroke, paralysis, and death."  

Anxious not to lose a treatment that they believed in, professional societies of anesthesiologists, pain medicine physicians, rehabilitation specialists, neurosurgeons, surgeons, radiologists and interventional pain specialists wrote guidelines to prevent complications from ESIs that were published in the journal Anesthesiology in 2015. 

A coalition of doctors also formed the Multisociety Pain Workgroup (MPW) to defend the use of ESI’s. The MPW called an AHRQ study “flawed” and “absurd” because its questioned the effectiveness of ESI’s for treating low back pain. It also lobbied unsuccessfully to have the FDA tone down its warning.

Since 2017, according to OpenSecrets.org, the American Society of Interventional Pain Physicians has spent nearly $1.5 million on campaign donations and lobbying — much of defending the use if ESIs.

Where was the same type of outcry from the medical profession defending the use of opioid medication when the 2016 CDC guideline was released? Why have so many doctors stood by silently while insurers, states and the DEA began implementing the guideline as policy?

Lynn Kivell Ashcraft is an analytic software consultant and writer who lives in Arizona. Lynn has lived with chronic intractable pain for almost 30 years and works with Dr. Forest Tennant as part of the Arachnoiditis Research and Education Project. 

Is Laughing Gas the Best Medicine for Labor Pain?

By Pat Anson, PNN Editor

A century ago, nitrous oxide – more commonly known as laughing gas -- was widely used in American hospitals to relieve labor pain during childbirth. But laughing gas fell out of favor as more Caesarean sections were performed and women opted more often for epidural injections for pain relief.  

Nitrous oxide is still commonly used in Europe and Australia to manage labor pain, and is beginning to regain popularity in the U.S. The inhaled anesthetic gas helps reduce anxiety and makes patients less aware of their pain, but does not eliminate it. 

“Nitrous oxide is easy for patients to use, relatively inexpensive, and will attract more patients looking for a birthing center, or more homelike type of delivery experience,” says Barbara Orlando, MD, an assistant professor of anesthesiology, perioperative and pain medicine at the Icahn School of Medicine at Mount Sinai, New York.

Orlando and her colleagues reviewed the medical records of nearly 2,000 women who used nitrous oxide during labor in five large university hospitals.

Many gave laughing gas high marks for pain control. The mean patient satisfaction rate for nitrous oxide was 7.4 (on a scale of 0 to 10). Their babies also had no adverse health effects.

Curiously, however, nearly 70 percent of the women who tried nitrous oxide switched to an epidural or another pain management method.  

“The high patient satisfaction rate and safety profile that we found should motivate other institutions nationwide to offer nitrous oxide as a pain management option to women in labor,” said Orlando, who presented her findings at the annual meeting of the American Society of Anesthesiologists (ASA).

“Although nitrous oxide did not prevent women in labor from requesting other pain management options like an epidural, we received positive feedback from patients who said they like laughing gas as an option to manage their pain.”

Epidurals injections allow mothers to stay awake and alert throughout delivery. But they are not without risks. A poorly placed needle can damage the spine permanently, as Dawn Gonzalez discovered a few years ago.

“The blind insertion of the epidural during birth is basically playing roulette for spinal damage. Normally birthing mothers are told the only side effect possible during epidurals is a spinal headache that lasts a few days,” said Gonzalez, who developed adhesive arachnoiditis, a chronic and disabling inflammation of her spinal nerves.  

The ASA has defended the use of epidurals, calling them “one of the most effective, safest and widely used forms of pain management for women in labor.”

In a large study of over a quarter million epidurals, the risk of complications was found to be low. An “unrecognized spinal catheter” – what Dawn Gonzalez experienced – occured in only one of every 15,435 deliveries. She thinks there are better odds and safer alternatives.

“Laughing gas, Lamaze, hypnotism, meditation, water birthing and even some medications are the absolute safest and most effective forms of labor pain relief. Every woman deserves to know that when she opts for any kind of invasive spinal anesthesia, the risks are very grave and by far much more common than anybody realizes,” Gonzalez said.

Why Do Doctors Keep Pushing Invasive Procedures on Me?

By Mike Emelio, Guest Columnist 

I'm not a cynical person by nature, but I'm seeing a very clear pattern with interventional pain management doctors. Why is it that every doctor I've seen who is certified in interventional pain medicine (at least 8 of them already) demonize opioid medication and insist on pushing their non-FDA approved injections, radiofrequency ablations, pain pumps and spinal cord stimulators? 

This approach is even more absurd when you consider the fact that invasive procedures tend to have low rates of efficacy and are known to create scar tissue and nerve damage, both of which can cause more pain.  

As if this weren't ridiculous enough, in spite of explaining to these doctors how epidural steroid injections not only didn't work for me, but robbed me of my life by tripling my pain and making my condition much worse (see “Disabled by the War on Opioids”), every single one of the doctors I've seen still tries to push more of those injections on me.  

My head spins every time I hear them try to sell me on more injections. Are they deaf, insane, just trying to make their wallets fatter, or all three?

On what planet does it make sense to do more of what made a thing worse? 

Ever since my life was ruined by those injections 5 years ago, I've been desperately trying to find a doctor who truly cares about my well-being and wants to help me. My search has been fruitless so far.  

Sadly, it just keeps getting worse. The latest doctor I started seeing keeps pushing a pain pump on me. That is as absurd as it gets. Multiple doctors have told me that the reason those injections made my back pain worse is because they caused adhesive arachnoiditis or nerve damage – both of which can be made worse with invasive procedures.  

Why would any doctor push a pain pump on me? I could understand it for a patient with a history of drug abuse, but that is not the case with me. Not only do I have zero history of drug or alcohol abuse, but I have taken my pain meds responsibly for many years. Why should I submit to being put under anesthesia, cut open and have a device implanted in me, all which can have serious complications, when I can get the same medication in a pill that I took responsibly for many years? 

All of the surgeons say that my best option for improved quality of life is pain medication and staying as active and mobile as possible. Yet every interventional pain management doctor ignores their advice and pushes for injections, spinal cord stimulators or pain pumps. Why would they do that?  

It's simple.  According to my Medicare statements, a doctor makes about $75 per visit to write and maintain prescription medications. But with the injections, it's $1,000 and up!

Many times I've personally seen doctors perform unnecessary tests that pay them a lot of money and only for that reason. This is not just my opinion, as other doctors I've seen have confirmed this. Not all doctors are like this and I wouldn't even venture to say most, but the fact is there are plenty of them out there. 

I'm not saying any of this to bash doctors. I'm sharing this information in hopes that people take the time to get educated, be vigilant and be their own advocate when it comes to their healthcare. Doctors are only human. They're just as susceptible to flaws as anyone else. I can't impress enough on all of you to look out for yourselves and get second, third, fourth and even fifth opinions if needed.

If you think that sounds excessive, just think about what happened to me. They took away what was working for me and used a non-FDA approved procedure on me that wasn't even designed for what they were using it for. The end result was that it crippled me, robbed me of my ability to work, forced me into a life of poverty and disability, and took away my freedom, my dignity and my ability to properly care for myself. 

Simply put... It has devastated my life.

I don't post any this for sympathy. I am only trying to educate and inform people about what can happen if they put too much faith in doctors without doing some research. What happened to me is a prime example of just how essential it is that we patients be as proactive as possible, be our own advocates and protect ourselves. 

Michael Emelio lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Epidural Steroid Injections Won’t Solve Your Back Pain

By David Hanscom, MD, PNN Columnist

A lawsuit was in the news recently about a Kentucky doctor who refused to give his patients pain medication unless they had epidural steroid injections.

Really? I have run across this scenario many times throughout my 32 years of performing complex spine surgery. It is a huge problem from several perspectives.

First of all, epidural steroid injections don’t provide lasting relief for any indication. This is particularly true when they are recommended for neck or back pain. There is not any research paper indicating a significant benefit. Yet they continue to be administered at a high rate.

I prescribed them sparingly for acute ruptured discs, where the natural history is for them to resolve without surgery most of the time. The steroids do knock down the inflammatory response that occurs around the disc material, so it buys some time and sanity while the body heals.

I also used them occasionally for spinal stenosis (constriction of the nerves). Pain in the arms and legs would usually improve for a short period of time.

What was unexpected was that many patients that I had on the schedule for surgery would cancel because their pain would disappear when they utilized other tools to calm down the body’s stress hormones. The more favorable hormone levels changed their pain threshold.

Epidural steroid injections as a stand-alone treatment might be of some benefit, but they aren’t going to definitively solve your chronic pain. Whatever benefit that a patient may feel probably comes from the systemic effects of the drug. Steroids make everything feel better, but it’s unfortunate that there are so many severe side effects.

Let me share what happened to one patient.

Ralph was one of my favorite patients. I worked with him for over 20 years. I haven’t met a more well-intentioned human being. By the time I first met him, he had undergone over ten surgeries and was fused from his neck to his pelvis. He never had relief from his chronic back pain. I had to perform a couple of major surgeries just to get him standing up straight.

I worked hard with Ralph on a structured rehab approach with some modest success. I lost track of the number of phone calls. He had a lot of stress at home and was helping to raise a grandchild. In spite of his pain, he kept moving forward.

Then he broke through and had a dramatic decrease in his pain and better function. Ralph wasn’t pain free and his function was permanently limited because his spine was fused. But he was stable on a relatively low dose of opioids. We were both pleased.

I didn’t hear from Ralph for many years until he called me from his local hospital. He was quite ill. His entire spine was severely infected. His primary care physician, who took care of his meds, had retired. No one else would take care of his needs and he was referred to a local pain clinic, which performed a high volume of spinal injections. They would only prescribe opioids if Ralph agreed to the injections.

Not only are injections ineffective for back pain, they really don’t work in the presence of 12 prior surgeries. Ralph’s back was a mass of scar tissue, rods and bone without much of a nerve supply. There is also less blood supply in scar tissue and a much higher chance of infection. Where would you even place a needle if the whole back is fused?

We admitted Ralph and had to open up his whole spine, which was infected with several hundred milliliters of gross pus. It took another two operations to wash him out and get the wound closed. He eventually did well, and we continue to stay in touch.

Ralph had to undergo a proven ineffective procedure in a high-risk setting in order to obtain pain medications that were effective. He became seriously ill, underwent three additional surgeries with the attendant pain and misery, and the cost to society was over a hundred thousand dollars. I rest my case. 

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Disabled by the War on Opioids

By Michael Emelio, Guest Columnist

I am 53 years old and have severe disc degeneration spread throughout my spine and scoliosis in my lower back. As if that weren't enough, I've also been diagnosed with fibromyalgia.

I have been on opioid medication since 2001.  For over a decade the meds helped reduce the pain enough so that I could still work 40 hours a week, including some heavy lifting. But in 2013 the DEA shutdown the doctor I had been with for over 12 years, forcing me to find a new pain management doctor.

The new doctor not only refused to continue the meds that were working for me, but immediately cut my opioids by over 90% without tapering me down at all. My pain increased so much that I couldn't return to work, even for light duty.

When I asked the doctor why he wouldn't continue the prescriptions my previous doctor was giving me, he said and I quote, “Because of the crackdown on pain meds you're not going to find a doctor in this state will give you more than what I'm giving you now." 

Mind you, this was back in 2014, and was still less than the maximum 90mg morphine equivalent dose that the CDC started recommending in 2016. 

Little did I know that was only the beginning of my nightmare. Since back surgery wasn't an option, the doctor told me my only choice was to have epidural steroid injections.

MICHAEL EMELIO

I did some research and had legitimate reservations about the injections, but without being offered any other options and not wanting to be labeled a drug seeker, I reluctantly agreed. I couldn't afford to be out of work much longer.

The injections were administered a month apart. The first series did nothing for my pain and the second one actually increased the pain by over three-fold. This resulted in me becoming completely bedridden 24 hours a day and struggling to complete the most basic daily life functions. I'm not talking about doing laundry and cleaning house. I'm talking about just feeding myself.

This left me unable to do any kind of work whatsoever, let alone return to my regular job of over 7 years, where I was working towards retirement. When I asked the doctor what was I supposed to do now, his response was, “Have you considered applying for disability?"

Unless you've been here, you cannot fathom the level of shock and horror that I felt at that moment, yet alone the level of injustice and outrage. A word that comes to mind is appalled, but that doesn't even begin to describe it. I went from being an able-bodied worker to disabled and bedridden 24 hours a day.  And for no other reason than the War on Opioids!

To be perfectly clear, I didn't take illegal drugs and I never abused, gave away or sold my prescriptions. I passed all my drug tests, never had a record of drug problems, or even a DUI. I didn't even drink alcohol. I did NOTHING to give them any reason whatsoever to take my medications away.

My current doctor is currently weaning me off the last of my opioids, stripping me of the last tiny bit of medication that have any effect on my pain. What little quality of life I have left is about to be taken away completely.

The only thing I can do now is pray that I am able to hold on and not become another suicide statistic after being forced to live in agony day-in and day-out. All because of the barbarically handled, totally blind, and uncompassionate War on Opioids.

Don't get me wrong. I'm not against fighting drug abuse and addiction, I'm just against the way it's being fought. Taking these medications away from people who have proven they need and use them responsibly will fail to have any impact whatsoever on the addicts who are abusing them.  It only serves to punish the honest and innocent. Why should I be punished and forced to live a life of pain, misery and indignity when I have done nothing wrong?

With the help of opioids, I was still very active and happy, enjoying things like riding motorcycles, jet skiing, and even paragliding. Although recently becoming single, I had no reason not to hope for eventually finding the right woman and living happily ever after.

But I've been robbed of all of that now. I am bedridden and struggling to survive on nothing more than disability income. My pain has tripled thanks to the unnecessary and unwanted steroid injections, and for no other reason than the fear instilled in my doctor by the DEA and CDC.

And it's still not over. The only thing my doctor is offering now is more of the very same injections that put me here in the first place and robbed me of my life.

What keeps me fighting is the sheer anger and outrage that I have for the injustice of it all. If you are a doctor, DEA agent, politician, or anybody else who is not a chronic pain patient – then take a minute to realize that you are only one car accident, one slip, or one fall away from this happening to you.

STOP THIS MADNESS!

Michael Emelio lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What Back Pain Sufferers Should Know

By Doug Beall, MD, Guest Columnist

Allow me to describe a common patient referred to my office. Their back pain has been around long enough to be chronic and anti-inflammatory pills no longer dilute the pain.  Good days are when the patient is able to leave the house and painfully make it through eight hours at work; bad days are when the only endurable position is to lay flat at home all day.

Learning to live with the pain is no longer an option, so his physician refers him to my office. Let's pause the story here.

This sequence has been the experience of countless patients suffering from back pain. After months — sometimes years — of what feels like a 10 on the pain scale, these patients are willing to do almost anything to make the pain go away.

By the time they come to the doctor, most have done their research and have already written their own prescription, concluding that invasive surgeries and painkillers are the only options strong enough to alleviate their pain. But how did we get to the point where the all-out attack option seems like the only option?

As a doctor who specializes in treating patients for back pain, here’s what I wish more patients suffering from chronic pain knew.

When it comes to strong painkillers and increasingly invasive surgeries, bigger is not better. While surgery is the right option for some, the culture of pain management in the United States has produced the myth that the more invasive and aggressive the technique, the more effective it is. This over-reliance on aggressive techniques, especially opioids and invasive surgeries, puts last resorts at the front of the line while ignoring a range of safer and frequently more effective treatments — injections, vertebral augmentation, stem cell therapy or radiofrequency ablation, to name a few.

Simply put, the more aggressive and invasive techniques have not demonstrated that they produce better results. People aren’t automobiles. Our bodies can’t be put back together quickly or without some downside from surgery. While the more invasive repair may be better for your car, when it comes to people, the less invasive the technique, the better the patient recovery will be.

The primary consequence of the bigger is better mentally has produced a dangerous dependence on opioids for treating non-cancer pain and post-surgical pain. Opioids may be necessary for a relatively comfortable recovery after surgery, but normally not for more than four to six weeks. Recent research published in the Journal of the American Medical Association (JAMA) estimates that six percent of patients prescribed opioids after surgery become persistent opioid users. Chronic opioid use has ruined countless lives, so any treatment relying on opioids should only be considered a last resort.

Furthermore, it’s not clear that invasive surgeries are effective for patients. As an example, one of the most common pain management procedures is lumbar spinal fusion surgery, which is often used to treat chronic lower back pain. A new study from the medical journal Spine indicates 20 percent of patients undergo another operation within four years of an initial spinal fusion. Patients can only hope they’re not the unlucky one out of five sitting in the doctor’s waiting room who will be back for a second operation.

Pain sufferers should know that the vast majority of their chronic pain could be helped with simple, less invasive procedures without having to make an incision. When patients are referred to my office, I start with the least invasive options before moving on to surgery and more definitive techniques.

Instead of having patients go under the knife and prescribing them opioids, many of my patients suffering from chronic lower back pain have experienced tremendous results with radiofrequency ablation, which uses radiofrequency energy to deactivate a nerve that transmits pain from a patient’s lumbar disc.  This procedure can be done with a needle during an outpatient visit, and it often provides instant relief that can last for years.

Other procedures include epidural steroid injections (ESIs) and vertebral augmentation surgery. Both are minimally invasive options that help relieve acute and chronic pain.

Epidural injections relieve a variety of conditions, including sciatica, herniated discs and spinal stenosis. During an ESI, a surgeon or interventional pain physician injects a local anesthetic and a steroid into the epidural space, providing swift pain relief for the region. While this relief only lasts for a few weeks or months, it provides patients with enough time to continue working on their physical therapy and for the underlying pathology to heal.

Vertebral augmentation is an injection of a cementing agent into a vertebra in order to stabilize a vertical compression fracture (VCF). VCFs can result in severe deformity and extreme pain, and vertebral augmentation can help fix this injury with minimal complication or risk.

For patients suffering the disabling effects of chronic back pain, it’s important to know there are alternatives to opioids and invasive surgeries; not only radiofrequency ablation, but a whole range of minimally-invasive techniques. In the end, surgery may be necessary — but for many, these other options will prove to be not only safer, but also more effective.

(Editor’s note: For another view on ESI’s and their risks, see Dr. Margaret Aranda’s column, “5 Things to Know About Epidural Steroid Injections.”)

Dr. Doug Beall is a Fellow of Interventional Pain Practice, a Diplomate of the American Academy of Pain Management and is the Chief of Services at Clinical Radiology of Oklahoma, specializing in interventional musculoskeletal care.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Bad Bill That Won't Fight Opioid Addiction

(Editor’s note: Last month, PNN reported on the “Post-Surgical Injections as an Opioid Alternative Act,” one of dozens of bills Congress is considering to combat the opioid crisis. HR 5804 would raise Medicare’s reimbursement rate for epidurals and other spinal injections used to treat post-surgical pain. The bill – which was lobbied for by doctors who perform the procedures – has drawn little public scrutiny and was rushed through a congressional committee after one brief hearing.)

By Denise Molohon, Guest Columnist

Raising the reimbursement rate for post-surgical spinal injections would dramatically increase healthcare costs and disability rates. This is based on historical research and medical evidence.

A harmful procedure should never be considered a “standard of care” by the medical profession. Yet that is what has happened with epidural steroid injections (ESIs) and Congress is going along with it under the guise of preventing opioid addiction.

“In the United States, more than ten million epidural steroid injections are delivered each year, a number that makes them the bread and butter of interventional pain management practices,” wrote Cathryn Jakobson Ramin, author of“Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.” 

The National Health and Medical Research Council of Australia warned in 1994 that the risk of a dural puncture of the spinal cord during an injection was at least 5 percent. It also cautioned that “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery.”

In such cases, an epidural steroid injection (ESI) carries a very high risk of direct entry into the subarachnoid space, which can have catastrophic consequences to a patient, including the development of Adhesive Arachnoiditis, a chronic, painful and disabling inflammation of spinal nerves. I live with that condition, along with a growing number of other patients.

“The incidence of arachnoiditis has risen about 400% in the past decade,” says Forest Tennant, MD, Editor Emeritus of Practical Pain Management.

Between 2000 and 2011, there was a staggering 665% increase in the rate of lumbar and sacral epidural injections among Medicare beneficiaries. The data also show that there were enormous increases in spinal injections performed by physical medicine and rehabilitation specialists.

“We are doing too many of these, and many of those don’t meet the proper criteria,” Dr. Laxmaiah Manchikanti told The New York Times in 2012.  Manchikanti runs a pain clinic in Paducah, KY and is chairman of the American Society of Interventional Pain Physicians – which lobbied for HR 5804 and gave campaign contributions to its sponsors. He told The Times about 20 percent of doctors who perform ESIs are not adequately trained.

The growing use of spinal injections has not resulted in better care. Dr. Richard Deyo, a professor of family medicine at Oregon Health and Science University, told the The Times that “people with back pain are reporting more functional limitations and work limitation, rather than less.”

HR 5804 is more bad policy piling on top of an already failed campaign of opioid legislation -- much of it based on misinformation provided by the CDC -- that will perpetuate the tsunami of needless pain and overdose deaths. 

It needs to stop. Today. 

When profit is one of the major motivating factors of those seeking new legislation, those creating the legislation and those lobbying for it need to be questioned. Profitability should never play a factor in any treatment plan. However, it now seems to dominate the American healthcare system from diagnosis to testing to medication. 

This needs to change.

Medicine needs to be removed from the hands of lobbyists, PAC’s, and politicians and put back into the hands of the personal physician and his or her patient. It should be as individualized and unique as the medical needs of each patient. 

It truly is that simple. 

Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Study Finds Many Treatments for Back Pain Ineffective

By Pat Anson, Editor

Lower back pain is the world’s leading cause of disability, affecting about 540 million people at any given time. With so many people suffering, you'd think there would be a consensus on the best way to treat or at least manage low back pain.

And you'd be wrong.

In a series of reviews appearing in The Lancet medical journal, an international team of researchers found that low back pain is usually treated with bad advice, inappropriate tests, risky surgeries and painkillers -- often against treatment guidelines.

“The majority of cases of low back pain respond to simple physical and psychological therapies that keep people active and enable them to stay at work,” says lead author Professor Rachelle Buchbinder of Monash University in Australia. “Often, however, it is more aggressive treatments of dubious benefit that are promoted and reimbursed.”

Buchbinder and her colleagues say low back pain is best managed in primary care, with the first line of treatment being education and advice to exercise, stay active and continue to work. Instead, a high number of low back pain patients are treated in emergency rooms, encouraged to rest and stop work, referred for scans or surgery, and prescribed painkillers.

“In many countries, painkillers that have limited positive effect are routinely prescribed for low back pain, with very little emphasis on interventions that are evidence based such as exercises," adds co-author Professor Nadine Foster of Keele University in the UK.

"As lower-income countries respond to this rapidly rising cause of disability, it is critical that they avoid the waste that these misguided practices entail."

Low back pain mostly affects adults of working age in lower socioeconomic groups. People with physically demanding jobs, physical and mental comorbidities, smokers, and obese individuals are at greatest risk of reporting low back pain. 

Most people with new episodes of low back pain recover quickly, but recurrences are common. It’s also important to rule out more serious causes of back pain, such as cancer, arthritis and spinal fractures. In a small proportion of people, low back pain can become chronic and disabling.

The Lancet authors say patients should avoid harmful and useless treatments, and doctors need to address widespread misconceptions about their effectiveness. For example, there is limited evidence to support the use of opioids for low back pain, and epidural steroid injections and acetaminophen (paracetamol) are not recommended at all.

The authors recommend counseling, exercise and cognitive behavioral therapy as first-line treatments for short-term low back pain, followed by spinal manipulation, massage, acupuncture, meditation and yoga as second line treatments.

“Millions of people across the world are getting the wrong care for low back pain. Protection of the public from unproven or harmful approaches to managing low back pain requires that governments and health-care leaders tackle entrenched and counterproductive reimbursement strategies, vested interests, and financial and professional incentives that maintain the status quo,” said co-author Professor Jan Hartvigsen of University of Southern Denmark.

“Funders should pay only for high-value care, stop funding ineffective or harmful tests and treatments, and importantly intensify research into prevention, better tests and better treatments.”

The findings in The Lancet series are similar to those reported in other medical journals. A 2016 study published in JAMA Internal Medicine found that regular exercise and education reduce the risk of developing lower back pain by as much as 45 percent.

Another study in JAMA found that opioid medication provides only modest short-term relief for low back pain. Previous studies published in the British Medical Journal and The Lancet also found little evidence that acetaminophen was effective in treating low back pain.

5 Things to Know About Epidural Steroid Injections

By Margaret Aranda, MD, Columnist

Some patients with neck and back pain report that their doctor requires them to get epidural steroid injections (ESI's) before they are prescribed opioid pain medication. Many do not realize that the procedure or any use of drugs for spinal injection is not FDA approved and is considered "off label."

Some patients benefit from ESI’s, while others gain no pain relief or suffer serious complications. In 2014, the FDA warned that injection of corticosteroids into the epidural space of the spine may result in rare but serious neurological events, including "loss of vision, stroke, paralysis, and death."  

A 2015 commentary by FDA scientists in The New England Journal of Medicine urged doctors to carefully select patients to identify those who might benefit from spinal injections and to minimize serious risks.

Probably the worst epidural steroid catastrophe was the 2012-13 outbreak of fungal meningitis, caused by contaminated steroids produced at the New England Compounding Center. As many as 13,000 patients nationwide were exposed to the fungus, mostly through epidural injection, resulting in 751 meningitis infections and at least 64 deaths.

Let's take a step back to assess why epidural steroids may or may not be a good idea. The rationale behind the procedure comes from the anti-inflammatory effect of steroids on the nerves.

Chronic inflammation in nerves can lead to pain, numbness, and muscle weakness. Nerve injury causes microscopic changes in nerve anatomy, including tissue swelling or edema, an increase in fibrous tissue and, in the worst case, nerve death through something called Wallerian degeneration. In cases like traumatic brain injury or stroke, the nerve damage can be permanent.

There are now about 9 million epidural steroid injections performed annually in the U.S and the number of procedures appears to be growing.

During a standard epidural injection, the doctor may inject into the epidural space a contrast dye using x-ray guidance (fluoroscopy) to make sure the dye is going into the correct location.  Others may use a more blind approach, called the "loss of resistance" technique, with a syringe of air that injects itself into the epidural space as it enters. There is a "pop" when the needle penetrates the epidural space.

After the air or dye is injected and the needle located, a second syringe containing  the steroid is injected. Afterward, the patient is observed for signs of pain relief and complications.

Many studies show that about 50% of patients feel better. If there is no pain relief after one ESI, a second attempt is usually in order. If partial relief is exhibited, a series of three injections in two weeks may be performed.

There is controversy over the rate and frequency of epidurals for pain. Typically, a “cycle” of epidurals is done, but if there is no pain relief after two injections, some doctors recommend that a different treatment be used. Some patients report getting as many as two or three dozen epidurals in a single year.  Critics say that raises the risk of a misplaced needle causing “cumulative trauma” and serious complications such as adhesive arachnoiditis.

If you doctor recommends that you get an epidural steroid injection, here are five things you need to know:

1. Drugs Used: The two most common drugs for ESI are a local anesthetic (lidocaine or bupivacaine) and/or a corticosteroid (betamethasone, dexamethasone, hydrocortisone, methyl-prednisolone, triamcinolone). 

The local anesthetic offers immediate numbing and pain relief. It also verifies whether the injection was done in the right place and gives an idea of how the steroid may act to decrease inflammation. After the anesthetic wears off, the steroid kicks in for an effect that may last varying times, sometimes for a short period and sometimes forever.

Patients and doctors need to know whether there was immediate pain relief from the local anesthetic. The doctor should ask, "Does the pain feel better?" to assess the temporary anesthetic effect.

If the answer is yes, then the steroid should provide more pain relief. If the answer is no, the steroid is much less likely to have any clinical effect. There is no indication to repeat the procedure if there is no decrease in pain. Doing so would unnecessarily expose a patient to serious complications or death.

2. Injection Sites: The most common injections are into the neck (cervical) and into the lower back (lumbar). Less commonly, epidural injections are placed into the upper back (thoracic) or to the bottom tip of the spine in the sacral area (caudal). The needle can go either straight into the middle of the spine (interlaminar), or enter from the left or right side (transforaminal). 

In general, the closer the injection is placed to the head, the greater the risk of serious complications if the needle accidentally hits a nerve or artery, an air bubble causes an embolism, or if the injection goes into the spinal fluid.

3. Minor complications: Adverse events can occur within minutes or up to 48 hours after an injection. Minor complications are generally not life-threatening and usually go away with little to no treatment.

Some patients get an "epidural headache" when the needle is inserted too far into the dura, causing a leak of cerebrospinal fluid. This is a stressful and painful headache, but it usually completely resolves. Other minor complications include facial flushing, fainting, hypertension (high blood pressure) and increased pain.

4. Serious complications: No one really knows the complication rate of epidural steroid injections, due to under-reporting by doctors and the lack of standard guidelines.

Normally, the steroid will flow into the epidural space above and below where it was injected, but it can also flow into unintended places like the subdural or intrathecal spaces, cranial nerves, brain stem, and lower midbrain.

For example, if the injection accidentally goes into the spinal fluid, the procedure becomes a spinal block, not an epidural block. This may lead to potentially life-threatening complications. If this happens during an injection to the neck, it can spread upward, toward the top of the head and into the brain, leading to serious complications. 

Severe complications from an injection can include arachnoiditis, allergic reactions, stroke, brain edema, cauda equina syndrome, seizures, vasculitis, blindness, and death.

5. Off-Label Use: The FDA places epidural steroids in the category of "off-label" use that falls within the practice of medicine and is not FDA-approved. The FDA requires all glucocorticoid steroid warning labels to state:

The safety and effectiveness of epidural administration of corticosteroids have not been established and corticosteroids are not approved for this use… serious neurologic events, some resulting in death, have been reported with epidural injection of corticosteroids.”

The FDA website also warns patients to seek emergency medical attention if they experience any unusual symptoms, such as loss of vision or vision changes, tingling in the arms or legs, sudden weakness or numbness, dizziness, severe headache or seizures.

If you have concerns regarding the use of epidural steroid injections, talk to your doctor.

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

What Next for Arachnoiditis Patients?

By Pat Anson, Editor

A pioneering two-day conference on arachnoiditis has ended in Helena, Montana with dozens of  patients armed with new information about the chronic and disabling spinal disease.

Many are also left wondering who will treat them and how to pay for it.

"We practitioners need your help and you need our help," says Forest Tennant, MD, who is the world's foremost authority on arachnoiditis, a progressive and incurable inflammation of the spinal cord that leaves most people who have it with severe chronic pain.

Tennant, who treats about 60 arachnoiditis patients from around the country at his pain clinic in West Covina, California, has developed a complex and unique therapy for arachnoiditis that combines pain medication, anti-inflammatory drugs, vitamins and hormones. Once bedridden or using walkers, several of his patients were healthy enough to make the long trip to Montana to hear him speak.

"I would not dare prescribe these drugs if I didn't have control of the opioids and everything else you're doing. These things are hazardous in the hands of the inexperienced," he warned.

At age 75, Tennant knows it is time for other doctors to learn and start practicing his treatment methods.  But he and his patients face a dilemma. Most pain management doctors and specialists already have a full patient load and Tennant himself is not taking new patients.

"Every good specialist in this country is booked. They're not available and they don't know anything about this anyway," says Tennant.

"Pain management really is its own specialty now and if they're not in that field, they're not going to help you do this. These hormones are going to have to be done by the same doctor that manages your pain and manages your inflammation. It's going to have to be done by the same practitioner."   

If attendance at the conference is any indication, finding doctors willing to learn and practice Tennant's treatment protocol will be difficult. Invitations went out to over two thousand practitioners in Montana, but only a handful showed up.  No one from the Montana Medical Association or the Montana Board of Medical Examiners attended.

"The problem with this protocol in the conventional medical world is that this crosses disciplines. We're talking rheumatologists, we're talking endocrinologists, and that's where conventional medicine gets stuck," says Christine White, ND, a naturopathic physician from Missoula who attended the conference. "Conventional medicine has evolved into this realm where the general practitioner doesn't do a lot. They refer out (to specialists) and what we need to do as physicians is get general practitioners willing to take on more rings of this problem."

The problem may be a bigger one that anyone imagines. Tennant estimates as many as one million Americans may suffer from arachnoiditis, many of them misdiagnosed with “failed back syndrome” or other spinal problems.

Most people get the disease when the arachnoid membrane that surrounds their spinal cord is damaged during surgery or punctured by a needle during an epidural steroid injection. Inflammation sets in and can spiral out of control, forming scar tissue that cause spinal nerves to stick together. That leads to adhesive arachnoiditis and neurological problems, which can cause burning or stinging pain that can be felt from head to toe.

Insurance Won't Pay the Bills

Besides getting treatment, another common problem faced by arachnoiditis sufferers is their insurance coverage.

"The reimbursement structure is part of the problem and the reason why I ended up with adhesive arachnoiditis," says Terri Anderson, who as a federal employee was covered by Blue Cross Blue Shield when she went to get treatment for back pain.

"I think the doctors and surgeons looked at my Blue Cross Blue Shield and they wanted to do epidural steroid injections and spinal surgery. Blue Cross had good coverage for all these invasive procedures, so I think they have some culpability," she said

Like many arachnoiditis patients, Anderson is not reimbursed for the unusual drugs and hormone therapy that she gets "off label" from Dr. Tennant or for the cost of traveling to see him in California. Her out of pocket expenses add up to about $200 a month.

"My co-pays for my medications are about $500 a month," says Nancy Marr of Los Angeles, who is insured through Medicare and a supplemental policy with AARP. Marr doesn't have to travel far to see Tennant, but she does have to pay out-of-pocket for his services.

"To participate in this kind of a program at this point in time would end up costing people a tremendous amount of out-of-pocket costs," she says.

While all of this is discouraging, the mood was anything but gloomy at the conference. For many, including this reporter, it was their first chance to meet and interact with people they've been communicating with online for years. That sense of community and a common goal stirs optimism. And so does the knowledge that the conference may have laid the groundwork for a treatment that could ultimately benefit thousands of people who are suffering.

New Treatment Gives Hope to Arachnoiditis Patients

By Pat Anson, Editor

Dozens of pain patients and physicians are meeting in Helena, Montana this weekend at a pioneering medical conference focused on arachnoiditis -- a progressive spinal disease long thought to be incurable that leaves many patients disabled with chronic back pain.

The conference is being led by Dr. Forest Tennant, a pain management physician from southern California, who has developed a unique protocol to treat arachnoiditis with a combination of pain medication, hormones and anti-inflammatory drugs. Unable to get the same type of therapy where they live, desperate patients from as far away as Maine, Alaska and Florida have been traveling to see Tennant for treatment at his pain clinic in West Covina, a Los Angeles suburb.

“We’re making history today. In all my wildest dreams I never thought we’d be having an arachnoiditis seminar in my home state,” said Gary Snook, a Montana native and a patient of Tennant for over a decade. “If there is one thing that we can learn today, it's that this hopelessly incurable disease that we suffer from is not as hopeless as we once thought.”

It was Kate Lamport’s idea to have Tennant give a seminar on arachnoiditis in her hometown of Helena. The 33-year old mother of four developed spinal pain after a series of epidurals for child birth and bulging discs in her back. She was diagnosed with arachnoiditis last year and went to see Dr. Tennant in California.

“As I learned more about arachnoiditis, I realized how many people were struggling just getting a diagnosis and treatment,” Lamport says. “There are so many people who want to go see Dr. Tennant, but they can’t. He’s booked and they can’t afford to travel, so I wanted to put something together to give people an opportunity to come see him and learn from him.”

The arachnoitditis conference is not just for patients. Several physicians and practitioners are also attending, hoping to learn some of the therapies Tennant has developed over the past decade.  

FOREST TENNANT, MD

“Physicians are simply not getting the education and training they need,” says Tennant. “I am just so frustrated by all of the patients who are calling and all of the physicians that are calling, the demand for knowledge. And so we need a new way of doing some training and some education. And this is my first attempt to step outside of the educational box, if you will, and see if this is a mechanism that will successful.”

Tennant has conducted extensive research on the disease and has launched an Arachnoiditis Education Project for physicians. He says patients respond much better to treatment when arachnoiditis is in its early stages, when the inflammation is limited to the arachnoid membrane that surrounds the spinal cord.

As the disease progresses, the inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together, leading to adhesive arachnoiditis -- which causes severe pain and other neurological problems, such as burning and stinging sensations that can radiate from the back down to the feet. More advanced stages of arachnoiditis can lead to paralysis.

Growing Number of Cases

Once considered rare, arachnoiditis is appearing more frequently as interventional pain physicians perform more surgeries and epidural steroid injections as alternatives to opioids for back pain. Tennant estimates as many as one million Americans may suffer from arachnoiditis, many of them misdiagnosed with “failed back syndrome” or other spinal conditions. He says every pain practice in the country needs to familiarize itself with arachnoiditis.

“We’ve had a decade of some marvelous science that no one talks about. We talk about opioids, epidurals and all the problems, but we don’t talk about the good things that have happened scientifically that have helped us develop a protocol to treat spinal cord inflammation,” Tennant told Pain News Network.

One discovery is the role that specialized cells in the brain and spinal cord – called microglial cells -- have in protecting and nourishing nerve cells. When glial cells become hyperactive in response to an injury, they trigger an inflammatory response that causes chronic pain.  That inflammation needs to be addressed with corticosteroids, says Tennant, or pain medications will never be effective.

The second discovery is that the central nervous system uses oxytocin, progesterone, pregnenolone and other hormones to regulate microglial cells. Hormone supplements and injections can be used to boost hormone levels and keep microglial cells at healthy levels.

“These two discoveries are profound. If it had not been for these two things, we would not be doing this seminar. The protocol that I’ve developed is because of these discoveries,” says Tennant.

Treatment Lowers Use of Opioids

Tennant’s treatment protocol is complex and requires the “off-label” use of several different medications. But many of his patients report they’ve been able to lead more productive and active lives, while reducing their use of opioid pain medication.

“It’s allowed me to be more active. I’m less exhausted, I get around better. I don’t have to use a walker as much,” says Rhonda Posey of Texas, who started seeing Tennant in April. “I’m smiling more. I’ve got better spirit and I have hope.”

“I actually believe that I was close to dying last year,” says Nancy Marr of Los Angeles, who suffered from arachnoiditis for a decade before she started seeing Tennant last year. “I went to see Dr. Tennant because my pain physician all of a sudden was threatening to withdraw all of my opioid medication.”

Blood tests revealed that Marr had low hormone levels and her inflammatory markers were “off the charts.” After treatment by Tennant, she’s only taking half the oxycodone she used to need for breakthrough pain.   

“My inflammatory markers are within normal range and my hormone levels are up. I’m feeling much better. I do have flares, but I can do a lot more,” she says.

“I’m on less pain medication now than I’ve been on for years,” said Jerry Davis of Arizona, who believes his back problems stem from a case of meningitis. “I got off the fentanyl. I got off all the other stuff."

Davis said he can usually sleep through the night, no longer has to spend some days in bed, and can lead a fairly normal life.

"I wasn’t in a wheelchair, but I probably would be by now if I hadn’t found him,” he says.

At age 75, Tennant isn’t sure how much longer he’ll be practicing. But he’s determined to share what he’s learned with other doctors, so they can provide the same treatment and hope he's given to arachnoiditis patients. Tennant is planning to host another arachnoiditis seminar in Hattiesburg, Mississippi this October.

What Arachnoiditis Did to Me

By Shane Schwartz, Guest Columnist

I injured my back lifting tiles and went through every possible treatment, including physical therapy, steroid injections and a host of other things before finally deciding to have surgery. I couldn't take the pain any longer.

After speaking with the neurosurgeon, I elected to proceed and had a 360 degree 2 level fusion at L4-S1 with plating and decompression. It was quite an extensive surgery lasting over 9 hours. I did okay for the first 6 months and was placed in physical therapy as part of my rehabilitation -- supposedly to get back to 80% of my normal health.

Well it fell apart shortly after that and I underwent another round of epidural injections in hopes of some sort of relief, but to no avail.

After being kicked to the curb by my neurosurgeon and being told of all kinds of different diagnoses which made absolutely no sense, I went to the Oklahoma University Medical Center because I was told I had a brain tumor by the crooked neurosurgeon’s partners in crime.

Upon arriving at the hospital, I said I needed a brain scan because of what the doctors who did my spine surgery had told me. The doctors at OU pretty much laughed after a physical exam of me. They scheduled me for spinal imaging and that is the first time I ever heard of Arachnoiditis. My father is a nurse anesthetist and he was very concerned when he heard that word being used.

Suddenly everything started fitting into place as to what was happening to my body. Look at the before and after pictures of me. My heart goes out to everyone dealing with this.

I sent my MRIs scans to a very qualified physician who specializes in this disorder and went to visit with him after reviewing my scans. He confirmed it was Adhesive Arachnoiditis.

Folks, this disorder is so much more than a spine issue. It robs me of everyday life as I once knew it.

I'm 41 years old, but feel as if I'm 90. No disrespect to the elders, please don't misunderstand me, but it causes unrelenting pain throughout my entire body.

BEFORE AND AFTER PHOTOS OF SHANE SCHWARTZ

I just want to be able to enjoy life with my children again. I have a 17 and 8 year old who have basically had their father stolen from them.

This disorder needs to be on the front burner of every doctor doing any kind of spine surgery, as I was NEVER warned of anything even remotely close to this as a side effect.  I question almost daily if tomorrow is even worth it. This is no way to live.

The spine surgeons keep getting richer at the public expense and when something of this nature occurs, you are like a tin can and kicked to the next doctor, who may or may not take you. From my experience no doctor wants to deal with Arachnoiditis once they hear the word. WHY?!?!? I am a human being!!!! Not a tin can that can just be kicked around and down the road because these doctors don’t want to deal with it or own it!!!

It's so very frustrating, depressing, and my anxiety is through the roof. It's just HORRIBLE!!!

God bless anyone and everyone who has this disorder and has to deal with it on a daily basis. I am open to conversing with others in my shoes. I love and wish us all the best and thanks for reading.

Shane Schwartz lives in Oklahoma.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Our Search for a New Pain Doctor

By Marlee Hanson, Guest Columnist

I am 31, and my husband Ray is 34.  Ray is disabled.  His biggest daily struggle is chronic pain from  a serious back injury. Adding to our troubles is that we live in Montana, a state where there is an acute shortage of doctors willing to treat chronic pain with pain medication.
 
Ray has undergone multiple surgeries to fuse his spine.  We went into these surgeries knowing he would lose some range of motion, but hopeful that they would lessen his pain, allowing Ray to be the husband and father he desperately wants to be.  Sadly, the surgeries were difficult, the recoveries were long, and his pain has only worsened postoperatively.  The disappointment has been crushing.
 
Interventional pain procedures have sadly failed to help my husband as well.  He has endured diagnostic CT myelograms and developed post-procedure cerebrospinal fluid (CSF) leaks.  One was severe enough to require an epidural blood patch.  A CSF leak causes vomiting and a severe headache commonly known as a spinal headache.  These are not only painful, but can lead to meningitis.  The primary treatment is bed-rest.  When this fails, an epidural blood patch is performed.  Though it relieves the headache in most cases, it puts the patient at further risk of developing meningitis.

On many days my husband is not able to move, get out of bed, prepare food, or even take a simple shower because the pain is so severe.  Thankfully, Ray has found relief through opioids. Oxycodone allows him to function so he can be a husband and father.  It gives him enough relief that he is able to stretch and do physical therapy exercises. 

Exercise has also allowed him to rebuild muscle, improve stamina and helped decrease his pain.  None of this would be possible without the pain relief opioids provide him. Unfortunately, we fear my husband is weeks away from losing access to the one medication that truly gives him relief, as his physician’s license has been suspended.

Once we knew this was a possibility, Ray and I began seeking a new doctor to treat him. I believe my husband is a low risk patient.  He takes his medication as prescribed, does not abuse it, and has never been discharged by a doctor for misusing his medication. He has never overdosed. 

ray and marlee hanson

So far we have scheduled appointments with two doctors. The first one neither examined my husband nor reviewed the X-Rays and MRI’s we brought to the appointment. This physician made his treatment decision based on the prescription monitoring database and gave my disabled husband a prescription for one quarter of what he usually takes in a month, along with a pamphlet on vocational rehabilitation. 

We told the doctor Ray had already consulted vocational rehabilitation when it was suggested by his workers compensation caseworker.  We explained to the doctor how much opioids have reduced his pain and improved his ability to function.  The doctor said it was simply not worth the risk of his license being suspended.

Years ago, workers’ compensation and Social Security deemed that Ray was disabled, based on input from several physicians.  We felt this new doctor was not listening, and we were disappointed when he refused to provide the chronic pain management my husband needs. 
 
We were still hopeful that the second doctor, who was recommended by a friend, would assume responsibility for his care.  Ray waited five months for this appointment.  The day before the appointment, the doctor's office called to cancel, stating she would not see Ray for pain management. She also refused to fill his prescription.  He has taken these medications with good functional benefit for the past eight years.

We used to travel to Missoula for chronic pain management.  The trip was inconvenient and the long drive exacerbated his pain.  Eventually we were fortunate enough to find a physician in Helena near our home.  Unfortunately, we will now be forced to travel for appointments once again and deal with all that this entails.  Our next appointment will be in Great Falls.  If Ray does not receive care there, not only will we be forced to travel out of state, but my husband will also have exhausted his supply of medication. 

Ray is a law abiding citizen with a chronic pain condition that needs to be addressed.  Finding care is nearly impossible in the current regulatory climate.  I fear deeply that one day he will escape his pain by suicide.  Ray is not suicidal at all, but I fear if he is forced to go without medication, he will become bound to bed in pain, and I fear that suicide will be the outcome.

The government is looking at opioid pain relievers as harmful substances.  When these medications are illicitly used and abused there is a problem.  That problem does need to be addressed.  However, as harmful as those medications have been for some, they are just as helpful for others.  We do not need laws restricting or banning opioids; we need a nationwide effort to ease the suffering of those who are in pain.  We need doctors and practitioners who are trained in proper use & dosage of pain medication, as well as alternative pain treatment. 

Physicians need to look at chronic pain patients as individuals, just as they do with other patients.  Each condition varies in severity and everyone metabolizes drugs differently.  Please allow doctors to prescribe the medications Ray needs to survive so can be the husband and father he wants to be.  His children and I deserve that, as does he. 

Marlee and Ray Hanson live in Montana.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Epidurals May Harm Newborn Babies

By Pat Anson, Editor

We’ve written before about the risks associated with epidural injections used to relieve back pain and pain during childbirth. Now comes word that epidural analgesia may also have adverse effects on newborns.

A large study by researchers at the University of Granada in Spain found that babies born after their mothers were given epidurals had a small decline in their overall health, were less likely to begin early breast feeding, and were significantly more likely to be admitted to neonatal intensive care. Resuscitation was also significantly more frequent in babies born after epidural analgesia.

The study, published in Midwifery magazine, involved over 2,600 babies born between 2010 and 2013 at San Juan de la Cruz hospital in Úbeda, a province of Jaén, Spain

"A series of adverse effects have been observed both on the mother and on the baby,” said lead author Concepción Ruiz Rodríguez, a professor in the Department of Nursing of the University of Granada.

“Adverse effects observed on the baby are attributed to a direct pharmacological effect, due to a placental transmission of the drug administered to the mother, or due to an indirect secondary effect as a consequence to the physiological changes the drug causes in the mother, such as hormonal changes."

Researchers measured the overall health of the babies by using Apgar index values, a quick test applied to newborn babies to assess their general health. They found the Apgar values were “slightly but significantly lower” in newborns whose mothers had epidurals.

“Epidural analgesia may have adverse effects on newborns, although the risks are low, and further research is required to elucidate the causal nature of this relationship,” said Ruiz Rodriguez. "For that, we consider that it's important that both mothers and health professionals (obstetricians and midwives) know and have in mind those risks when the time for taking a decision comes.”

Epidurals involve the injection of steroids, opioids or other analgesic drugs through a catheter. The injection blocks the transmission of pain signals through nerves in the spinal cord.

Epidurals are commonly used to relieve pain during childbirth and, while the risks are low, they can result in complications for the mother such as headaches, difficulty breathing, seizures, or damage to the spinal cord. Drugs used during epidurals also pass through the placenta to the baby.

Epidurals injections are given to millions of Americans each year for back pain and there is growing controversy over their use. A study by federal researchers last year found that steroid injections provide limited or no relief  from radiculopathy and spinal stenosis, two conditions that cause low back pain.

A number of prominent physicians have told Pain News Network the shots are overused, with some patients getting dozens of injections, which raises their risk of complications.