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.”

Fed Report Sparks New Debate over Steroid Injections

By Pat Anson, Editor

A government report on epidural steroid injections is sparking a new debate on the safety and effectiveness of the procedure, which is used to treat back pain in millions of people.

A coalition of spine and pain management doctors is calling the report’s conclusion that steroid injections have little value  “fundamentally false.”

But critics of the procedure say the injections are risky, overused, and often a waste of money.

The report by the Agency for Healthcare Research and Quality (AHRQ), which is part of the Department of Health and Human Services, said there is little evidence that epidural steroid injections were effective in treating low back pain.

“Epidural corticosteroid injections for radiculopathy were associated with immediate improvements in pain and might be associated with immediate improvements in function, but benefits were small and not sustained, and there was no effect on long-term risk of surgery,” the report states.

Epidural injections have been used for many years to relieve pain during childbirth, but they are increasingly being used to treat back pain.

An estimated 9 million epidural steroid injections are performed in the U.S. annually, and the shots have become a common procedure at many pain management clinics. Costs vary from as little as $445 to $2,000 per injection.

A coalition of 14 different societies representing anesthesiologists, surgeons and pain management doctors is lobbying the AHRQ to tone down its report, saying it has raised “significant concerns for physicians who utilize injection procedures.”

“We are fully cognizant of the issues of overutilization and inappropriate utilization, and therefore also wish to bring into focus which interventions are effective when treating the various causes of back pain,” wrote Belinda Duszynski, senior director of Policy and Practice for the International Spine Society, in a lengthy letter to the AHRQ on behalf of the Multisociety Pain Workgroup.

Duszynski’s letter, which is also being sent to a number of medical journals, claims the authors of the AHRQ report used “flawed” and “absurd” analysis on the effectiveness of the injections. She warned the report “may lead to egregious denial of access to these procedures for many patients suffering from low back pain.”

But critics say "interventionalist" doctors are simply trying to preserve a lucrative part of their practice.

“These professional medical societies are worked up because this study basically states that epidural steroid injections have small benefit, the improvements in function are not sustained, and they do not prevent surgery,” said Terri Anderson, a Montana woman whose spine was permanently damaged after receiving about 20 steroid injections for a ruptured disc in her back.

Anderson now suffers from arachnoiditis, an inflammation in the spinal membrane that causes severe chronic pain and disability.

“From my personal perspective, these spinal injections are wasting billions of dollars on the front end, plus there is no estimate high enough to account for the human suffering that this industry has brought upon the American public,” Anderson wrote in an email to Pain News Network.  “When the injections go south and the steroids are misplaced in the spinal cord, this results in life-long disabilities and suffering that cannot be described.” 

The AHRQ report is not the first to raise questions about the safety and effectiveness of epidural steroid injections. Several recent studies have found the injections raise the risk of spinal fractures and do little to control back pain. Questions about their safety also led to an order from the Food and Drug Administration last year that requires drug makers to put warning labels on injectable steroids.

“Injection of corticosteroids into the epidural space of the spine may result in rare but serious adverse events, including loss of vision, stroke, paralysis, and death,” the FDA said in a statement.

The agency has never formally approved the use of steroid injections to treat back pain. However, the procedure can still be used “off label” to treat back pain.

Many patients who were injured by spinal injections say they were never warned about the risks involved.

“The fact of the matter remains that there is no solid evidence that these injections are of any lasting benefit,” said Dawn Gonzalez, who developed arachnoiditis after a botched epidural during childbirth. “There is just no sound supporting evidence of the efficacy of corticosteroid injections in the spine, and more evidence of the contrary. Epidural steroid injections are bad science.”

A study funded by the AHRQ and published last year in the New England Journal of Medicine found that epidural steroid injections do not relieve pain in patients with lumbar spinal stenosis, a common cause of lower back and leg pain.

The Choosing Wisely campaign of the ABIM Foundation, which seeks to reduce or eliminate unnecessary medical procedures, does not oppose the use of steroid injections for back pain. But it does urge doctors not to repeat the procedure if a patient shows no improvement from a previous injection. 

Lower back pain is the world's leading cause of disability, causing more health loss than diabetes, chronic obstructive pulmonary disease, and asthma combined. Over 80 percent of adults have low back pain at some point in their lives.

My Life with Arachnoiditis

By Tom Bresnahan, Guest Columnist

Let me tell you briefly about my past before I describe the hell I live with every day.

Before moving to Florida in 2000, I owned and operated a 6 store Domino's Pizza franchise in Tacoma, Washington. I served as an elected fire commissioner, belonged to two search and rescue groups, and was trained and certified as a swift water rescue technician. As you can see, I'm no couch potato.

tom bresnahan

After selling my business and moving to Florida I decided to pursue a career in healthcare, something I had wanted to do for many years. I went back to school and received a degree in Radiological Technology.

While attending school I fell off of a roof, damaged my back, and required surgery. In 2003, I had a triple fusion of my lumbar region performed by a local orthopedic surgeon. Everything went well and I went on to work as cardiac catheter technician, a fast paced, adrenaline junkie’s dream job! I took a lot of calls and enjoyed the challenge of working with a team trying to save the life of someone having a heart attack. 

In 2009, I started to have sciatica pain in my right leg. It was interfering with my work, so I went back to the doctor who had performed my surgery. He suggested a series of epidural steroid injections. He said they were extremely safe and could eliminate my pain.

When I arrived for my first injection, I reminded the nurse to tell the doctor of the “outpouching” I had on my spinal cord. This is known as a pseudomeningoceale. It was caused when the doctor doing my first back surgery performed a laminectomy and didn't take the right steps to keep the pouch from forming. When I discovered this on an MRI and asked him about it, I was told that it was completely normal and that I shouldn't be concerned. 

The image on the right shows the pouch as a white mass on my spine.

The first steroid injection had no effect, so a few months later I went in for a second. Again I reminded the nurse about the outpouching. This message was never shared with the doctor, although he should have looked at my chart prior to the procedure.  The injection was given and within hours my pain became elevated. I called the doctor and was told this is normal and not to be concerned.

Over the next several days my pain increased, and it was difficult to concentrate and perform my job. I was seen again by the doctor and he scheduled a discogram, a test is to see if a disk is ruptured or torn. It is a very painful test. The results came back stating I had a torn disk above the level of my first surgery. The doctor said I would need another fusion. 

I went in for surgery on September 8, 2009. By then the pain was quite bad and I was looking for anything to give me some relief. After I was partially sedated the doctor came in and told my wife that this surgery would most likely not help with my pain. I was nearly out and she didn't know what to do, so in I went for what would be a totally unnecessary procedure. 

As the pain medication from surgery wore off, the pain was so bad it made me scream out loud. This went on for months! My wife took me to the ER and back to the doctor’s office, where I was told, “We don't know what’s wrong." 

I couldn't work and after being out for 90 days I was terminated. I was devastated that I was losing a job I loved and spending every moment in horrific pain.  I finally went to see a neurosurgeon who ordered a myelogram, an image of my spine that was performed at the hospital where I had worked.

The neurosuregon, who I had worked with on several occasions, did the test. Afterward he came into the recovery room and said, "Tom, you're screwed!" 

I laughed thinking he was joking. 

“You have a condition known as Adhesive Arachnoiditis,” the doctor told me. “You're going to be in pain the rest of your life!" 

I was shocked and couldn't believe this was happening. He told me the nerves within my spine were all clumped together. He said over time scar tissue would form and probably make the pain worse and cause things like bladder and bowel dysfunction. And there was no cure.

The test was done and I learned my fate on Dec 31, 2009. Happy New Year!   

Over the next few months I went through many medications, trying to get the pain under control. The drugs did very little to help. I also ordered copies of the dictations from all of the procedures I had done by my surgeon. On the dictation done for my last injection the surgeon stated, "I did get withdrawal so I repositioned the needle and did 4 injections.” 

The "withdrawal" was spinal fluid. He had punctured my spinal cord, yet continued to inject the steroid Depo-Medrol into my spine. When I confronted him at what was to be my last appointment, he told me, "You would have a hard time proving it!" 

Since that time I've been through the 5 stages of grief, with anger being the hardest to overcome.  I was determined to find a fix, but eventually realized there was none. 

I came close to ending my life on two occasions. My wife of 3 years told me, "I didn't sign up for this!" We divorced shortly after that. 

I have spent the last 2 years trying to effect a change and educating people on the dangers of epidural steroid injections. I have tried to help others with Arachnoiditis find medications, support and the faith to continue on each day.

I have a phrase that I tell those who feel the desire to end their pain and their life, "As long as we are breathing there is hope!" 

The pain has gotten worse over the last 2 years. I have had episodes of not being able to move my legs when I wake up in the morning. This alone will scare a person terribly! My legs go numb if I sit for more than 15 minutes.  The pain now extends into my arms and hands. 

Because this condition affects the nervous system I have developed an internal thermostat problem. I will feel cold and actually shiver in a room that is 76 degrees. At other times I will break into a sweat that's so bad I'm drenched within a few minutes, to the point that I have to change shirts. I can't tell you how many times I've lain in bed screaming because the pain is so bad. 

I have never in my life been one to take it easy, yet I've had people actually tell me, "It couldn't be that bad!" 

This is demoralizing, frustrating and depressing. Steroid injections are a band aid at best and the destroyer of life at worst. Please help us put a stop to these injections that are causing so many to suffer so much!

I want to thank you for taking the time to read my story. I pray every night that if we can stop anyone else from ending up with this hellish pain then I will feel that I have made a difference. 

Tom Bresnahan lives in Florida. He is a patient advocate and activist with the Arachnoiditis Society for Awareness and Prevention.

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.