The Difference Between Intractable and Chronic Pain

By Forest Tennant, MD, DrPH

The current attempts by a number of parties to castigate and humiliate pain patients and their medical practitioners is not just pathetic and mostly false, it is dangerous to the fate and life of many intractable pain (IP) patients.  If it wasn’t so serious, some of the claims, biases and beliefs would make good comedy.

First and foremost there has been no discussion about the difference between intractable pain and chronic pain.  There really is no bigger issue. 

The proper identification and treatment of the IP patient is not only essential for the health and well-being of the IP patient, it is a major key to the prevention of overdoses and diversion of abusable drugs.  IP patients must have special care and monitoring.  

The basic definition of IP is a “moderate to severe, constant pain that has no known cure and requires daily medical treatment.” 

Chronic pain, on the other hand is a “mild to moderate, intermittent, recurring pain that does not require daily medical treatment.” While there are millions of persons with chronic pain, only about 10% are intractable.

The cause of “intractability” is two-fold:

1. The initial injury or disease which initiated IP was severe enough to cause a pathologic transformation of the microglial cells in the spinal cord and/or brain. It is this transformation that produces neuroinflammation and the constancy of the pain. This process is known as “centralization” or “central sensitivity.”

2. To have enough injury to cause “centralization” one must have a most serious disease or condition of which the most common are: adhesive arachnoiditis, traumatic brain injury, reflex sympathetic dystrophy, post-viral encephalopathy, or a genetic disease such as Ehlers-Danlos Syndrome, porphyria, or sickle cell disease.

Medical practitioners must have minimally-restricted prescribing authority and autonomy to adequately treat IP.  For example, the proper treatment of IP not only requires analgesics, opioids and non-opioid, but specific anti-inflammatory, hormonal, and corticosteroid agents that will cross the blood brain barrier and control inflamed and pathologic microglial cells.  Treatment of IP has to be individually tailored and may require non-standard, off-label, or an unusual treatment regimen.  

Make no mistake about it.  The new treatment approach to IP is quite effective in reducing pain, controlling neuroinflammation, and allowing patients to biologically function well enough to have a good quality of life.  Also be advised that the new IP approach is not just reducing pain but treating the underlying cause of pain.  Consequently, a lot of expensive procedures, therapies, and opioids are no longer needed. 

As long as I am practicing I will continue to push forward this new approach.

Dr. Tennant specializes in the research and treatment of intractable pain at the Veract Intractable Pain Clinic in West Covina, California, which remains in operation after recently being raided by DEA agents. Many of Dr. Tennant's patients travel from out-of-state because they are unable to find effective treatment elsewhere.

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.

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.

Doctor Makes California Pain Clinic a Special Place

By Kristen Ogden, Guest Columnist

Rarely have I spent five days engaged in doing work that left me feeling as fulfilled as my recent stint helping as a volunteer in Dr. Forest Tennant’s pain clinic in West Covina, California.

For the past 3 years, I have been privileged to volunteer whenever I have traveled with my husband, Louis, for his appointments with Dr. Tennant. However, this was the first time I have given much thought to exactly what makes a visit to Dr. Tennant’s clinic such a special experience for his patients and their families.

COURTESY CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

Dr. Tennant and his wife and office manager, Miriam Tennant, sometimes refer to the clinic as a “mom and pop” operation.  If “mom and pop” makes you think of behind-the-times or unsophisticated, think again. 

Hidden in plain view, among the simple furnishings and interesting artifacts of a long career, is a true frontier in medicine, where discoveries are made, causes of rare diseases are pursued with vigor and, most importantly, a place where people suffering from constant pain are helped like nowhere else. 

One thing that stands out about Dr. Tennant’s clinic is the focus on family participation.  He requires prospective patients to be accompanied by a family member on their initial visits and encourages family members to attend.  The active engagement and participation of family is critical to a successful partnership with Dr. Tennant.  Patients and family members are required to sign documents to show their understanding of the off-label use of medications, willingness to participate in research, and acceptance of potential risks involved. 

The role of the family in supporting the patient is critical.  And why wouldn’t it be?  Intractable pain exacts its toll on the entire family.  A person suffering from undertreated severe pain becomes unable to function normally or participate fully in life.  Many face  loss of income, depletion of savings, routine tasks that don’t get done, loss of quality time with family, loss of contact with friends, and the loss of the ability to enjoy life.  Families with excellent relationships and coping skills are greatly affected. The impact on families less tightly bound can be enormous.  

I know many of Dr. Tennant’s patients and their family members.  They are just regular folks, nice people from all kinds of backgrounds, with one thing in common.  Somewhere along the way, their lives were hijacked by a rare illness or disease that bombarded them with unimaginable pain. 

Dr. Tennant’s embrace of patients extends beyond the walls of the clinic and the usual office hours.  During clinic week, you can expect to find him with Miriam enjoying dinner at a favorite restaurant with patients and family members, including many who traveled across the country and are staying in local hotels. It’s common to hear Dr. Tennant say, “We’ll be at Marie’s tonight around 7. Come join us for dinner.” 

Who has ever gone to see a doctor and gotten invited to dinner?  But that’s what he and Miriam do.  It’s another way they engage with families, and demonstrate their interest and care for patients.  They like to get to know their patients as people, not just names on a medical chart.

The informal group dinners bring other benefits.  For some, it is the first time they will meet others who share the agony of intractable pain or share the same illness. You may go to dinner wondering if you will enjoy an evening with strangers, and leave feeling like you have found a new extended family. 

Dr. Tennant always has some new diagnostic test or research study up his sleeve.  Recently, he asked patients to participate in a new DNA study of genetic indicators not previously studied in rare diseases that involve chronic pain.   Every new test and diagnostic tool reveals important information – hormone panels, nerve conduction studies, blood tests for inflammatory biomarkers, and MRI images that may reveal the presence of adhesive arachnoiditis.  

All of these diagnostic research efforts produce new insights.  For example, in a study of over 100 intractable pain patients who require relatively high opioid doses, Dr. Tennant found that 91% of them had genetic defects that impacted their ability to metabolize medications, suggesting why they need higher doses for effective pain relief. 

Another example is the growing understanding of the impact of pain on hormone levels.  Severe chronic pain initially elevates hormones, but if uncontrolled for too long, hormone levels become depleted.  Hormone levels that are too high or too low are biomarkers of uncontrolled pain, and indicate that higher doses of pain medications or hormone replacement may be necessary.  Ongoing clinical research is a key element of Dr. Tennant’s approach to pain care. 

In my visits with Louis to numerous pain doctors prior to finding Dr. Tennant, almost all of them said, “The goal is to get you off those pain medications.” 

I was shocked when I first heard Dr. Tennant say, “The goal is to relieve your pain.” 

Dr. Tennant has the expertise to “see” a patient’s pain and to ask the right questions. His discerning eye can distinguish between intractable pain patients and the few who come to the clinic seeking drugs for the wrong reasons. 

Dr. Tennant understands that most patients have already tried and failed at many different pain treatments.  When that is the case, he tries to determine what will work. The goal is to relieve pain so that the patient has a chance at meaningful improvement of function and quality of life.  There is no demeaning treatment, there are no words said that convey doubt or suspicion, there are no looks that say, “You must be a drug seeker.”  Dr. Tennant’s clinic is one of very few medical facilities I have visited where there was no evidence of stigma toward pain patients. 

An important piece of Dr. Tennant’s philosophy is that if you effectively treat the pain, improvements in function and quality of life will follow.  Dr. Tennant prescribes medication as needed to enable patients to effectively manage their pain, which in turn helps to stabilize their overall condition, while the underlying causes are identified and treatments are attempted.  If a patient’s pain remains undertreated, the likelihood of successfully treating the underlying causes is greatly reduced.

Transforming Pain Care

The Institute of Medicine’s 2011 report, Relieving Pain in America, called for “a cultural transformation in the way pain is understood, assessed, and treated.”  The characteristics I would seek in such a transformation of pain care are visible every day in Dr. Tennant’s clinic.  I wish that other doctors who treat chronic pain could get outside the bounds of their particular specialties and professional societies to view their patients differently. 

As Dr. Tennant’s research has moved forward, he has found that the majority of chronic pain patients who go to his clinic have 4 or 5 rare disease conditions:  adhesive arachnoiditis, post-viral autoimmune disease, Reflex Sympathetic Dystrophy (also called Complex Regional Pain Syndrome), and connective tissue disorders such as Ehlers-Danlos Syndrome.  All of these conditions are often accompanied by very severe, constant pain. 

In the last few years, Dr. Tennant has made great advances in identifying and treating the underlying causes of intractable pain.  He credits two recent scientific advances for enabling him to treat the causes rather than just the symptoms of pain. First, we now know that microglial cells within the central nervous system, once activated by a painful injury, disease or trauma, cause inflammation inside the brain and spinal cord.  This neuro-inflammation causes chronic pain to centralize in the spinal cord and brain, resulting in severe pain that is constant. 

Second, we now know that nerve cells may regrow, a process called neurogenesis.  Certain neuro-hormones in the brain and spinal cord can promote neurogenesis when neuro-inflammation is reduced.  Dr. Tennant’s approach is to reduce neuro-inflammation while simultaneously promoting neurogenesis.  His protocols for treatment of neuro-inflammation are in their early stage, but they are already providing disease regression, enhanced pain relief, less suffering, and, for some patients, reduction in the use of opioids. 

It is a true privilege to work as a volunteer in Dr. Tennant’s clinic.  When I asked him in 2014 if I could be a volunteer, I had two specific reasons:  to learn more so I could fight back against our insurance provider (who had suddenly decided to reduce the reimbursement for my husband’s pain medications), and to educate myself so that I could become an effective advocate for chronic pain patients.  We lost the battle with the insurance company, but I have certainly received an education that very few people have a chance to experience. 

Dr. Tennant’s methods and approaches are not proprietary -- he's eager to share them. There are many good doctors out there who could learn to do what he does, instead of focusing solely on the treatment of pain as a symptom. It doesn’t require a fancy clinic, lots of money, and corporate or university infrastructures.  What it takes is a doctor who is truly committed to relieving pain and practicing the art of healing. 

It is possible to manage pain with medicine instead of injecting the spine, inserting stimulators and pumps, or using other invasive procedures.  Instead of treating pain with these modalities, treat and relieve the pain with medication, stabilize the patient, and search for the underlying causes so that they can be addressed. 

At age 76, Dr. Tennant could have retired and given up his practice many years ago. Why does he put up with the many challenges of operating a pain clinic?  Because he truly cares about helping people who are suffering.

Kristen Ogden has advocated for her husband, a long-term intractable pain patient, for over 20 years.  She is the co-founder of Families for Intractable Pain Relief, an advocacy group for pain patients and their loved ones.

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 You Need to Know About Chronic Pain

By Sarah Elizabeth Hirschle, Guest Columnist

This is a side of my life not many know about, except close friends and family.

This is me when traveling anywhere over an hour away. I can only sit in the car for up to an hour. I was traveling to my doctor's appointment several hours away. 

I share for awareness, not pity.

In the past three weeks, I have been able to leave the house twice a week at most. Some of those days were just short car rides to get some fresh air and sun. 

This is the sad reality of so many chronic pain patients. Much more awareness is needed, especially in the medical community. 

If you have a loved one that is suffering from pain, please listen. Talk to them, let them know you care. Even if you don't know what to do to help or hate seeing them that way. 

A few things to know about chronic illness and pain:

SARAH ELIZABETH HIRSCHLE

• The pain causes depression and depression causes pain.

• Pain is very isolating, making patients feel unlovable and alone, when in fact we need love and companionship the most at these times.

• True chronic pain patients who are on narcotics for pain do not get high from their meds.

When your body is under stress and in insurmountable amounts of pain, all you get from opioid medication is relief. There is a big difference between dependence and addiction.

We do what whatever is necessary to have some quality of life.

Please reach out if you know someone is suffering. You may save their life without knowing it.

Sarah Elizabeth Hirschle lives in Pennsylvania. Sarah contracted Lyme disease as an infant, which caused permanent organ damage. At age 20, her spinal cord was damaged during a botched epidural and she developed arachnoiditis.  Sarah also lives with Chronic Regional Pain Syndrome in her legs and feet.

Sarah helps run a Facebook support group called Arachnoiditis Everyday and moderates the Facebook page of the Arachnoiditis Society.

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.

West Virginia Moves to Stop Opioid Madness

By Kenny Brooks, Guest Columnist

When most people think of West Virginia, they think about mountains, coal mines and miners.  The number of coal miners in West Virginia suffering from black lung, cancer and other chronic illnesses plays a significant role in the state's high rate of disability, estimated at nearly 20 percent of the population. 

Many military veterans in West Virginia also suffer from lifelong pain and disability, as do injured public safety employees, police, firefighters and paramedics. I was severely injured as a paramedic in a work related accident and now live with arachnoiditis, a painful inflammation in my spine that will never go away.

All of this pain and disability has a significant impact on our state. The per capita income of West Virginia is only about $37,000 a year, making it one of the poorest states in the union.  About 23% of West Virginians live below the national poverty line.  We rank 5th highest in suicide and have the highest overdose death rate in the country.

West Virginia was one of the first states to crackdown on pill mills and doctors who overprescribe opioids, but opioid overdoses continue rising, especially from heroin, illicit fentanyl and addicts taking pain medication.

The CDC’s opioid prescribing guidelines only made things worse for real pain patients, causing many to be under treated or abandoned by doctors who took an oath to relieve pain and suffering.

West Virginia lawmakers have seen enough of this suffering. In an unprecedented move, the legislature this month passed Senate Bill 339, with the goal of restoring the integrity of chronic pain management in the state.

The bill was introduced by State Senator Tom Takubo, DO, a pulmonary physician who specializes in treating patients suffering from lung and breathing problems.  Dr. Takubo understands the ethical duty to act, and to help alleviate chronic suffering and pain from incurable chronic conditions.

Senate Bill 339 was approved unanimously by both the House and Senate, and was signed this week into law by the governor.  It recognizes that regulations have caused “patients seeking pain treatment to suffer from a lack of treatment options” and that “prescribers should have the flexibility to effectively treat patients who present with chronic pain.”

The bill also establishes a commission -- called the Coalition for Responsible Chronic Pain Management -- to advise the legislature if a “less cumbersome” manner exists to regulate pain care in the state.

The Coalition will consists of the following members:  The Dean of the School of Public Health at West Virginia University, a physician board certified in pain management, three physicians licensed to practice in West Virginia, a licensed pharmacist, a licensed chiropractor, a licensed physical therapist experienced in the area of chronic pain, and a consumer of healthcare services directly impacted by pain clinic regulations – in other words, a pain patient.

We have about a month before the appointments are made and I am hopeful that I will be appointed as the patient representative. I hope to bring to the Coalition not only my experience as a pain patient, but my experience as a paramedic.  I spent many hours in school years ago learning about medical and legal issues, and believe I have a unique perspective to bring to the table.

My goals are simple: to change the regulations and prescribing guidelines back to individualized patient centered care, not addiction centered algorithms. I am also concerned about doctors being afraid to treat pain patients due to legal reprisals.

I hope to bring a voice of reason to the Coalition, and to help other states look at what we are doing in West Virginia to stop the opioid madness.  

Kenny Brooks is an arachnoiditis survivor and former career firefighter in Montgomery County, Maryland.  He loves his family, his church, his dog, his friends, and he feels very blessed to have a great team of medical doctors and pharmacists who understand quality of life medical care. Kenny became more involved in politics following the sad consequences he witnessed in other arachnoiditis patients due to the CDC guidelines. 

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.

Can Stem Cells Treat Arachnoiditis?

By Pat Anson, PNN Editor

Sara Bomar thought she’d be spending the rest of her life in a wheelchair or bedridden.

sara bomar davis and husband george

But the 54-year old Tennessee woman is not only walking again, she’s been able to resume her career as a doctor after an experimental stem cell treatment for her chronic back pain.

What makes her recovery all the more remarkable is that Bomar has arachnoiditis, a spinal disease that leaves many patients permanently disabled.  

“I am able to walk. I am able to workout at the Y. I am still careful. It’s not like I don’t ever have any pain, I do have a little bit from time to time. But it is nothing compared to what I had before,” says Bomar, who practices general medicine in the Nashville area.

Bomar’s back problems started in 2000 with a ruptured disc. Surgery, physical therapy, epidural steroid injections and spinal cord stimulators all failed to stop the pain and her condition worsened. By 2008, she was in a wheelchair and diagnosed with arachnoiditis, an inflammation of the arachnoid membrane that surrounds the spinal cord.

The inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together. That is known as adhesive arachnoiditis, which causes burning or stinging pain that can be felt from head to toe. The disease is progressive and thought to be incurable.

Or is it?

Two years ago Bomar heard about innovative stem cell treatments being offered by Todd Malan, MD, at the Center for Regenerative Cell Medicine in Scottsdale, Arizona. At the time, Malan had successfully treated only one other patient with arachnoiditis, but in that case the disease was still in its early stages. Bomar’s arachnoiditis was more advanced, but she thought stem cells were worth trying.

“It was kind of a shot in the dark,” she says. “There was really nothing else.”

Stem Cells as “Seeker Hunters”

Most people think stem cells can only be found in bone marrow or human embryos, but Malan uses fat-derived stem cells found in the patient’s adipose (fatty) tissue.  When injected into the blood stream, Malan says these stem cells are “incredible seeker hunters” that can locate and repair damaged tissue, while reducing inflammation and improving circulation.

“The key is to understand that these stem cells are designed by the body to do this repair process,” Malan said. “What we’re trying to do with these procedures is to enhance the normal process that the body uses.”

Malan enhances the process further with a high-dose infusion of as many as 100 million stem cells. For patients with spinal cord or brain injuries, he also injects mannitol, a drug used to treat head trauma that apparently helps the stem cells pass through the blood-brain barrier into the central nervous system.  

In August 2014, Bomar received a high-dose infusion of her own stem cells through an IV in her arm. Within a week, she noticed that the blood circulation in her left leg seemed to be improving.

“My mom came and visited me three days after I had the procedure and she said, ‘You know, I think your foot looks a little pinker.’ And I looked down and said, ‘Gosh mom, you’re right.’”

A few days later, Bomar noticed reduced swelling in her feet and could put on shoes that she wasn’t able to wear before. Months later, she was able to exercise on an underwater treadmill and then an elliptical machine. There was also less pain.

“The pain started to lessen. It was slow, it wasn’t all at once. But over months, which I think was fantastic progress, that pain did lessen,” she remembers. “Arachnoiditis is a pain that you deal with constantly. And it was really something not to have that constantly. I remember at first just thinking, wait a minute. I don’t have any pain right now. That was pretty amazing.”

sara and daughter anna

Bomar’s condition has improved so much that she was able to vacation with her family in California last summer, and go hiking and bike riding.

Because Bomar still has metal in a spinal cord stimulator implanted in her back, an MRI can’t be taken to confirm if the nerves in her spine are still encased in scar tissue. But Malan is confident the scar tissue is either gone or the stem cells have created enough healthy nerve tissue to bypass the problem.

“The studies have been well documented, especially for scar tissue breakdown,” he says.

Malan has now treated about two dozen patients with arachnoiditis, but is careful not to say that a cure or treatment has been found. He says more studies are needed to confirm if his stem cell therapies are safe and effective. 

“We have not had a patient yet who hasn’t had a clinical response,” he told Pain News Network. “The vast majority of the patients with adhesive arachnoiditis or chemical arachnoiditis have gotten to a point where they say their quality of life has significantly improved.” 

“I believe the doctor. I think it could be a breakthrough,” says Forest Tennant, MD, a California pain physician who is one of the world’s leading experts on arachnoiditis.

Tennant plans to begin using stem cell treatments himself, along with other experimental therapies such as growth hormones. But he doesn’t think stem cells will work on patients with advanced cases of arachnoiditis.

“I do have two patients who have tried it and it did not work. But their cases were so far along. They were already bed-bound and paralyzed, and you can’t expect a treatment like that to help,” he said. “The disease has to be in its fairly early stages for it to work, would be my guess. We don’t know enough. It’s the old story of one case does not make a treatment, but one good case certainly stimulates investigation into that treatment. And that’s where we’re at with this.”

More Clinical Studies Needed

One issue that’s been holding up investigation is that most stem cell treatments have not been approved by the Food and Drug Administration. FDA commissioner Robert Califf, MD, was openly skeptical of stem cells derived from body fat (adipose tissue) in a commentary recently published in the New England Journal of Medicine.

“Stem cells derived from sources such as adipose tissue are being used to treat multiple orthopedic, neurologic, and other diseases. Often, these cells are being used in practice on the basis of minimal clinical evidence of safety or efficacy,” Califf wrote.

Dr. Malan bristles at the notion there is not enough evidence and blames the FDA for holding up stem cell research.

“The FDA hasn’t approved a single stem cell technology in 16 years in the United States,” he said. “These are approved therapies in other countries. And to make statements that there is inadequate evidence is ridiculous. The reason there is inadequate evidence is because the FDA has not permitted us to do anything but Phase I studies.”

Until more advanced studies are conducted and new stem cell therapies approved, the treatment that appears to have worked so well on Sara Bomar will not be widely available for patients who suffer from arachnoiditis. Dr. Tennant estimates as many as one million Americans may have the disease, many of them misdiagnosed with “failed back syndrome” or other spinal problems.

“It certainly helped me,” Bomar says of stem cell therapy. “As far as I’m aware, there is nothing else out there could provide this kind of relief.”

Studies Promote Epidurals Without Explaining Risks

By Pat Anson, Editor

Two recent studies presented at a meeting of anesthesiologists are promoting the benefits of epidurals to relieve pain during child birth. But a woman whose spinal cord was permanently damaged by an epidural says new mothers need to be told more about the risks involved.

First, about those studies.

A study of over 200 women presented at the annual meeting American Society of Anesthesiologists found that epidurals – in addition to relieving labor pain – also appear to lower the risk of postpartum depression for new mothers.

"Labor pain matters more than just for the birth experience. It may be psychologically harmful for some women and play a significant role in the development of postpartum depression," said Grace Lim, MD, director of obstetric anesthesiology at Magee Women's Hospital of the University of Pittsburgh Medical Center.

"We found that certain women who experience good pain relief from epidural analgesia are less likely to exhibit depressive symptoms in the postpartum period."

The second study found that women who chose nitrous oxide – laughing gas – to manage labor pain get only limited relief. And a majority wind up getting an epidural anyway once the pain starts.

"Nitrous oxide is gaining interest among expectant mothers as an option to manage labor pain and is becoming more widely available in the United States," said Caitlin Sutton, MD, an obstetric anesthesiology fellow at Stanford University School of Medicine. "However, we found that for the majority of patients, nitrous oxide does not prevent them from requesting an epidural. While nitrous oxide may be somewhat helpful, but epidural anesthesia remains the most effective method for managing labor pain."

Epidurals are effective at relieving pain, but how safe are they?

“By far the gas is safest form of pain relief for women during labor, along with other non-invasive methods,” says Dawn Gonzalez, whose spinal cord was accidentally punctured by an epidural needle during childbirth. “Epidural anesthesia is the most popular form of anesthesia during labor, but women are rarely warned about the long term, devastating effects and consequences that some women will encounter.”

The injury to Gonzalez’s spine during the botched epidural led to the development of adhesive arachnoiditis, a chronic inflammation that caused scar tissue to form and adhere to the nerves in her spine. She now suffers from severe chronic pain and is disabled. Gonzalez says the pain she experiences today is far worse than the temporary labor pain she would have experienced without an epidural.

“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. True informed consent is missing from the equation,” says Gonzalez.

“I often wish I could go back and decline the epidural because arachnoiditis has completely turned my life and that of my family upside down. I had so many dreams for the future with my children, and there is so much I miss out on and will never reach due to being injured during my epidural.”

The American Society of Anesthesiologists (ASA) has long defended the use of epidurals, calling the risk of complications a “myth.” The ASA has called the procedure “one of the most effective, safest and widely used forms of pain management for women in labor.”

A study of over a quarter million epidurals by the Society for Obstetric Anesthesia and Perinatology also found the risk of complications to be low. An “unrecognized spinal catheter” – what Dawn Gonzalez experienced – occurred in about one in 15,435 deliveries.

She thinks there are better 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 says. “We have a tendency to think it will ‘never happen to me,’ but you do take very serious risks for yourself and your child when opting for an obstetric epidural.”

One hundred years ago, laughing gas was widely used in hospitals to relieve pain during childbirth, but it fell out of favor as more Caesarean sections were performed and women needed more pain relief.  Nitrous oxide helps reduce anxiety and makes patients less aware of pain, but it does not eliminate it. 

In the laughing gas study of nearly 4,700 women who gave birth vaginally at a U.S. obstetric center, only 148 patients chose to use nitrous oxide. Nearly two out of three wound up getting an epidural once labor began.

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.

Montana to Host Arachnoiditis Seminar for Doctors

By Pat Anson, Editor

You might call it the world’s longest house call.

Dr. Forest Tennant, a pain management physician in West Covina, California, will travel nearly a thousand miles this summer to meet with patients and doctors in Helena, Montana. Tennant will lead a two-day seminar on arachnoiditis, a chronic and painful spinal disease that leaves many patients permanently disabled.

Tennant’s trip to Montana is a reversal of sorts. For years, dozens of desperate arachnoiditis patients from Montana and other states have traveled cross-country to see him at his pain clinic outside Los Angeles.

“In the past it was considered a rare disease with no hope. We can do a lot to diagnose and to treat it now,” says Tennant, who has done extensive research on the disease and has launched an Arachnoiditis Education Project for physicians.

Arachnoiditis has nothing to do with arachnophobia, a fear of spiders. It’s an inflammation of the arachnoid membrane that surrounds the spinal cord. Over time, the inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together. This leads to adhesive arachnoiditis, which causes severe chronic pain and other neurological problems. The disease is progressive, incurable and difficult to treat.

Once considered rare, Tennant is seeing more and more cases.

FOREST TENNANT, MD

“Every pain practice I talk to now says ‘Oh, I have a patient with this.’ This is an emerging issue that every practice in the country will have to become aware of, just like Hepatitis C or AIDS or Lyme disease. It’s one of these diseases that’s here. It’s not going away. The fact is we’re all going to grow older and we all have spines that are going deteriorate. We’re going to end up with this. We have the technology and the knowledge now to diagnose it and the protocol to treat it.” 

Tennant uses a combination of pain medication, hormones and anti-inflammatory drugs to manage the symptoms of arachnoiditis and possibly stop its progression. He wants to share with Montana doctors what he’s learned.  

“We would like to identify some practitioners in the area who are interested in the disease and who would be willing to treat patients,” says Tennant. “We’d also like to foster the development of patient groups for self-support. Those are the two goals.”

Montana may be small in terms of population, but the Big Sky state has fostered some of the most vocal and educated grassroots activists in the pain community. Several have arachnoiditis, and after years of dealing with a healthcare system that failed to treat or even recognize their symptoms, they’re finally getting some attention.

Kate Lamport, a 33-year old mother of four from Helena, developed arachnoiditis after a series of epidural injections for child birth and bulging discs in her back. Her back pain was originally thought to be from fibromyalgia or Lyme disease, but on a trip to California to see Tennant a few months ago, she was diagnosed with arachnoiditis.   

“While I was there, I was blown away by the amount of people that have arachnoiditis and how undertreated and under acknowledged a disease it is,” says Lamport, who pitched the idea of a seminar to Tennant.

“I asked him if I put together a conference if he would speak at it and teach other doctors and patients that don’t have an opportunity to come see him,” says Lamport. “Doctor Tennant is so knowledgeable. If I call him and I say this is what’s acting up, he knows what to say and what to do. A month ago my adrenal glands shutdown and that’s when you die. And he knew what to do to get me out of that.”

Many patients are convinced they developed arachnoiditis after surgeries or epidural steroid injections that damaged their spines. But Tennant believes the underlying causes are more complex.

“There are several ways to get this. Unfortunately, there’s too much focus on medical procedures,” he says Tennant. “There are people we now know who have gotten it from viral infections, Lyme disease, auto-immune disorders, and what have you. There are a lot of different reasons why you get this and medical procedures can accelerate it.”

There’s a great deal of debate in the medical community over the value of spinal injections, surgeries, spinal cord stimulators and other “interventional” procedures to treat back pain. About 9 million epidural steroid injections are performed annually in the United States, often as a substitute for opioid pain medication.

Tennant says epidurals can be effective, but are increasingly overused, with some patients getting dozens of injections annually.

“Unfortunately, somebody who’s had a lot of back procedures is likely to end up with arachnoiditis. It’s a complication of medical procedures that may not be able to be avoided. And I want to make a point of this. Somebody who needs back surgery may have to take the risk,” he says.

The arachnoiditis seminar will be held July 9th and 10th at the Radisson Hotel in Helena, Montana's capital. For further additional information or to register for the conference, click here.

Montana Public Radio recently broadcast a two-part series on “pain refugees” leaving the state for treatment and the fear many Montana doctors have about prescribing opioids, which may have led one pain patient to commit suicide.

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.

My Life is Not My Own

By Michell Freeman, Guest Columnist

A little over two years ago I was in an automobile accident that involved a fatality. I was hit by a car that ran a red light.

I was unable to walk without great pain. When I arrived at the hospital, my legs felt very cold and I had lost feeling in my saddle area and later down my left leg. The doctor came in and told my family that I had a sequestered disc fragment in my spine.

The doctor told my husband that I was to lie flat on my back and only to get up to use the restroom. If I lost control of my bowel or bladder, I was to call 911. I was released the same day with a follow up appointment with a neurosurgeon.

I was able to see the neurosurgeon the next day, and was instructed to take a steroid for seven days and given opiate pain medication. He wanted to get the inflammation down. About a week later, I returned to his office unable to walk. The pain had me screaming for help.

I was told that I needed to undergo an emergency laminectomy and discectomy to remove the damaged disc. On my follow up, I let my surgeon know something wasn't right. I was leaking and having sudden urges to urinate. I was also having electric sensations go down my back and legs. I was burning. I had another MRI and was told I had a lot of inflammation involving the nerve roots.

michell freeman

I was referred to a pain management doctor for a series of selective nerve root injections. On my first appointment I was nervous and was given a Valium. I laid flat face down and the nurse said that she was going to walk me through it. The doctor didn’t speak, only to say who he was.

As the procedure began, the pain was terrible. The nurse said he was about to inject Depo-Medrol steroid. I felt a shock of electricity go down my leg and I began to cry. The nurse assured me this was normal and the doctor cleaned my back and walked out the room. I had no feeling in my leg and was placed in a wheelchair.

My pain was not better but increased and my head would hurt so bad I would put an ice pack on it. For a while my body ached. Two weeks later in I went for a second injection. On my third injection while on the table my doctor started the procedure and inserted the catheter. It was very painful. He moved the table up higher with the needle inserted to get a better view using fluoroscopy.

Tears were falling and the nurse said it was almost over. Just as she said that I screamed out loud as my back jerked. The pain was excruciating. The doctor finished and walked out the room without speaking.

The following summer, I went back to the neurosurgeon and he told me my pain may possibly be permanent. He said he was out of options and my primary care physician would need to take over; either helping with pain medication or a referral to another pain management specialist because I refused to get anymore injections. The neurosurgeon, imaging and pain management were all in the same complex.

Last February, I was finally diagnosed with Adhesive Arachnoiditis. I had sent my MRI scans to be reviewed, and the scan taken two months after my surgery confirmed that the Arachnoiditis had already advanced to the adhesive stage.

I have since developed colitis, bradycardia with syncope, and fluctuating blood pressure. I no longer can go to activities with my children at home nor play the same with my four grandchildren. I break plans often due to unrelenting pain.

I have days of not being able to get out of bed. My life is no longer my own. I have lost control of deciding what I am able to do each day. I have to take opiate medications in order to have some life, relief and function. Before finding the correct dosage and keeping it as low as possible, I would constantly cry out and beg to die.

Pain altered my brain and I had thoughts of suicide daily. I lost the life I once knew as an employee with USPS, an active wife, mother, and grandmother. I now live a life of having to learn how to adapt, improvise and overcome.

Michell Freeman lives in South Carolina. She is a member of the Facebook support groups Arachnoiditis Together We Fight and Arachnoiditis Everyday.

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.

Opioids Saved My Life

By Rebecca “Becky” McCandless, Guest Columnist

My new life of chronic pain started in May of 2005. After being diagnosed with degenerative disc disease, I was given a series of 3 epidural steroid injections with a corticosteroid made by Pfizer called Depo-Medrol.

I had no relief from the first two injections, but my doctor insisted that I try a third one. He struggled to get the needle into the epidural space, probably because of scar tissue in my back caused by a prior back surgery, a laminectomy.

After the 3rd steroid injection, I had a severe, instant headache, which was relieved somewhat when I laid down. The doctor had punctured my dura, the outer lining of the spinal cord, which caused a spinal leak.

He was defensive when I told him about my headache pain, saying, “No way, there was no fluid in my syringe.”

After an unsuccessful blood patch, I ended up in the ER a week later with the worst, throbbing headache I ever suffered. Every time I lifted my head I vomited violently.

The doctor ordered numerous tests and he finally diagnosed me with too much STRESS! I knew something had gone wrong during the epidural steroid injection, yet my doctor blamed me for the harm he did to my spine. My pain worsened over time and it became so intense that I thought about suicide.

Luckily, I found a doctor who prescribed opioids for my intractable pain or I would not be here. Opioids saved my life.

rebecca roberts

I tried many other drugs, including Lyrica, which is much more expensive, made me tired and affected my thinking abilities.  Opioids allow me to do my grocery shopping and care for myself.  If I don't have access to my pain meds, I have no quality of life. Opioids keep my pain at tolerable levels. It does not get rid of my pain totally, nothing ever will.

Opioids are often blamed for accidental overdoses, but I know better as I have arachnoiditis friends who committed suicide because their pain was so bad.  Some families deny it was suicide because insurance companies will not pay if a family member commits suicide.

Eventually I found a doctor who diagnosed me with arachnoiditis. There is no cure for this pain condition. It is mainly iatrogenic, which means it is caused by a medical procedure.

I also found out arachnoiditis is caused by Depo-Medrol. Pfizer warns against the use of this drug in epidurals in Australia and New Zealand. The New Zealand datasheet states that Depo-Medrol must not be used in epidurals and on page 18 it says it can cause arachnoiditis.  Patients need to read the datasheet for themselves before they agree to allow a doctor to do an injection near their spinal cord.

Three months after my epidurals, I could no longer work and had to leave my quality control job at a manufacturing plant, making transmission parts for Honda, which I had done successfully for four years. I loved my job and worked 60 to 70 hours per week.  Now I rely on Social Security disability. 

Luckily, my disability was quickly approved. Many of my arachnoiditis friends struggled for years to get their diagnosis.  Some never do.  According to one estimate, there are 11,000 new cases of arachnoiditis each year, but I think it is much more than that because doctors will not admit to harm.

My medical injury was 10 years ago.  I have been on a high stable dose of opioids with no increases. Now there is so much talk with the Centers for Disease Control Prevention creating guidelines to control opioid prescribing.

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.

Thank you to producer Gerri Constant and KCBS-TV in Los Angeles for reporting on the dangers of epidural injections.  We agree with Dr. Forest Tennant that this pain condition is no longer rare.

Rebecca Roberts lives in Indiana. She is a member and supporter of the Arachnoiditis Society for Awareness and Prevention (ASAP)  and the Facebook group Arachnoiditis Together We Fight.

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.

Experts Say Epidural Steroid Injections Overused

By Pat Anson, Editor

Epidural steroid injections are being used too often to treat back pain, in part because of an insurance compensation system that encourages doctors to generate more income by using the procedure, several leading experts in pain management have told Pain News Network.

An estimated 9 million epidural steroid injections (ESI’s) are performed annually in the U.S. Epidural shots with an analgesic have long been used to relieve pain during child birth, but in recent years injections of a corticosteroid into the epidural space around the spinal cord have become an increasingly common procedure to treat back pain.

Critics say epidural injections are overused and patients risk permanent damage to their spinal cords if they get the shots too often.

“Have they been overused? Yes. And I’ve seen the complications. They happen when people have done far too many. I’ve seen people who’ve had two to three dozen epidurals in a given year,” said Forest Tennant, MD, a prominent pain management specialist in West Covina, California.

“It’s like a cumulative trauma. You just can’t keep doing epidurals on somebody or you’re going to get damage to the outer layer of the spinal cord. It’s amazing to me the number of people who’ve had epidurals and they can’t count how many they’ve had. I’ve had patients who say, ‘I’ve had a hundred.’ I mean, are you kidding me?”

One of Tennant’s patients compares epidurals to a game of Russian roulette.

“A doctor puts one bullet in the cylinder, gives it a spin, points it at your head, and pulls the trigger. Five of the six chambers are empty or ‘safe’ but the 6th chamber carries risk of a negative outcome that is so catastrophic that no one in his right mind would take the risks,” said Gary Snook, a Montana man who developed Arachnoiditis, a chronic and painful inflammation of the spinal cord, after getting a series of epidurals for back pain.

“These injections are expensive. Please take your limited health care dollars and spend them where they will do you some good. Join a gym, do pool exercises, swim, or learn and do Pilates. I know it is a lot of work, but you will not end up like me."

ESI’s can be a lucrative procedure for physicians, depending on insurance payments and where the epidurals are performed. Payments can vary widely, from a few hundred dollars to over $2,000 per injection.

The debate over the safety of ESI’s often pits surgeons and anesthesiologists, known as “interventionalists,” against traditional pain management doctors, who usually rely on opioids, physical therapy and other less invasive procedures to control pain.

“We have far too many interventionalists, compared to people who do medical management. I’m on the medical management side and I wish there were a lot more of us. I mean, I’m swamped,” Tennant told Pain News Network. “But on the other hand, you’ve got plenty of interventionalists who will do an epidural any day of the week. We have an imbalance of those people who want to do epidurals.

“Let’s face it. The money motive is there. And this money motive is not just the anesthesiologists. It’s the surgery centers, it’s the hospitals. And it has caused problems.”

Lobbying the Feds

Epidurals are drawing more scrutiny from federal agencies like the Food and Drug Administration, which has never approved the use of steroids in spinal injections. But steroids can still be used “off label” to treat back pain, which prompted the agency last year to warn that injectable steroids “may result in rare but serious adverse events, including loss of vision, stroke, paralysis, and death.”

That prompted an outcry from the Multisociety Pain Workgroup (MPW), a coalition of 14 different societies representing anesthesiologists, surgeons and pain management doctors. The group sent a letter to the FDA defending the use of epidurals and asked the agency to revise its warning.

“While complications with epidural steroid injections have been reported, and are likely underreported, serious complications are limited to isolated case reports,” the MPW letter states.

The FDA hasn’t changed its warning, but the MPW has stepped up its lobbying campaign with the federal government, recently asking the Agency for Healthcare Research and Quality (AHRQ), which is part of the Department of Health and Human Services, to tone down another report which said there was little evidence that ESI’s were effective in treating low back pain.

“We are fully cognizant of the issues of overutilization and inappropriate utilization,” the MPW said in a lengthy letter to the AHRQ, which called the report's analysis on the effectiveness of epidurals "flawed” and “absurd.”  The letter makes no mention of how to address the overuse of epidurals.

The MPW’s lobbying campaign has drawn criticism from Laxmaiah Manchikanti, MD, chairman and CEO of the American Society of Interventional Pain Physicians, which is not part of the MPW coalition.

DR. LAXMAIAH MANCHIKANTI

“There is no question that epidural steroid injections are over-utilized,” said Manchikanti, who is medical director of a pain clinic in Paducah, Kentucky.  “Unfortunately, MPW has been contributing to over-utilization of transforaminal epidural injections because of their own interest in this.”

Instead of addressing the overuse of epidurals, Manchikanti says the MPW is actually making the problem worse.

“They may be even promoting them. Multiple MPW signatories have numerous conflicts of interest of their own and each one is looking out for themselves,” he wrote in an email to Pain News Network.

Manchikanti has done some lobbying of his own, and is heading an effort to get the Centers for Medicare and Medicaid Services (CMS) to change its compensation system for epidural procedures.

Medicare currently pays about $132 to doctors who perform epidurals in their own offices, while physicians who do the same injections in a hospital, pain clinic or surgical center will get about $670. That “remarkable discrepancy,” according to Manchikanti, contributes to over-utilization by encouraging hospitals and other large facilities to do more epidurals.

“Office-based practices are increasingly being purchased by hospitals and in this well-documented circumstance, the ownership has the potential to change the payment dramatically,” Manchikanti wrote in a letter to the journal Pain Physician. “These patterns increase expenses by paying a much higher rate for HOPDs  (hospital outpatient services), even though they are just physician offices. This issue also favors inappropriate performance of the procedures with bundling." 

Repeated requests to the CMS for comment on this story went unanswered.

Solutions to Overuse

What can be done to reduce or eliminate the overuse of epidurals? One approach is to stop paying high reimbursement rates for the procedure.

“Site-neutral payment is the solution,” says Manchikanti. “We have been working on this issue where a hospital’s pay should be reduced to the level of ambulatory surgery centers (ASCs) or about 10% higher, and office reimbursement should be at least 60% of ASC payment.” 

“Probably everything that gets compensated well is over-utilized because it’s the compensation system. It’s a reimbursement system that pays more for treatment procedures than outcomes,” said Lynn Webster, MD, a prominent pain physician and past president of the American Academy of Pain Medicine, which is a part of the MPW coalition.

“I think our healthcare system is perverted and doesn’t really help us deliver better outcomes; but more procedures, more visits, and none of that’s tied to improving the quality of care.”

Like Manchikanti, Tennant and other physicians Pain News Network interviewed for this story, Webster says epidurals can be effective in managing back pain when used sparingly.

“I’ve performed many epidural steroids and as a result I was able to I think provide a great deal of relief for thousands of individuals and they didn’t have to be on any other medicines,” Webster said. “Because the epidural steroids could work for several months sometimes, I would do an epidural steroid injection once every year for some people.”

Tennant thinks the solution is limiting the number of epidurals, regardless of where they are performed.

“There’s got to be a balance here. Epidurals have a place," Tennant said. "But I do think there needs to be some standards set based on the number of epidurals one can endure, in let’s say a year’s period of time.”