Tennant Foundation Launches Intractable Pain Research and Education Project

By Pat Anson, PNN Editor

One of the pioneers of pain management in the United States is hoping to draw more attention to intractable pain and how it differs from chronic pain. While chronic pain lasts for 90 days or more, intractable pain can persist for years, decades or even a lifetime. Many doctors fail to distinguish between the two, which leads to gaps in diagnosis and treatment.

“The pain field has been woefully negligent about this. They talk about symptomatic treatment of what to do to relieve chronic pain, but in order to deal with intractable pain syndrome you’ve got to treat the underlying cause,” says Dr. Forest Tennant, whose foundation has just released a new report called “The Intractable Pain Syndrome: A Call for Recognition and Prevention.”

“We’ve worked on it for quite some time with the goal of having every patient, doctor, nurse and family understand it. And to try and bring things out in language that is understandable by everybody.”

“This was a labor of love for all of us, born from a sincere desire to bring recognition, treatment and prevention to this devastating syndrome,” says co-author Ingrid Hollis, whose son was treated by Tennant for Arachnoiditis and Ehlers-Danlos Syndrome. “We have learned so much through the years, and I believe there is much that can be done to prevent intractable pain syndrome from developing and progressing when it occurs.”

“One of the reasons we’re doing this is to call for early recognition and vigorous treatment,” Tennant told PNN. “Someone who has this for two, five or twenty years, you can’t expect much reversal. But those people who have these conditions for six months or a year, they have a great ability to reverse a great deal of this. The earlier the treatment, the better the outcome.”

Left untreated, Tennant says intractable pain syndrome (IPS) can lead to chronic inflammation in the central nervous system that is difficult to reverse.  The inflammation not only causes constant pain, it leads to loss of brain tissue and creates dysfunction in the neurologic, cardiovascular, hormone and immune systems.  

“We’ve known for centuries that a painful injury will create what amounts to electricity. And too much electricity causes inflammation and inflammation causes tissue destruction,” says Tennant. “Intractable pain syndrome does change their basic physiology by virtue of altering physically the neurotransmitter systems that are in the brain and spinal cord. That is really the difference. And this is very objective. It’s measurable. It’s visible. It’s clear when its present.”

Tennant says these “pockets” of inflammation can be seen on MRI’s and brain scans. Someone suffering from simple chronic pain won’t have them, but people with intractable pain will.

There are five basic conditions that can cause IPS:

1. Arachnoiditis, a chronic inflammation of spinal nerves

2. Genetic connective tissue/collagen disorders such as Ehlers-Danlos Syndrome (EDS)

3. Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS)

4. Brain injuries caused by strokes or head trauma

5. Serious end-stage osteoarthritis of the spine, hips, knees or feet.

Other possible causes of IPS are porphyria, sickle cell disease, Lyme disease, interstitial cystitis, and some rare genetic disorders.   

IPS Can Be Reversed

Long recognized as incurable, Tennant says intractable pain can be reversed if diagnosed and treated early. He has pioneered some new treatments for IPS, including hormone supplements, physical therapy and better nutrition.

“Our project hopes to educate people about what they can do to reverse a lot of this,” Tennant told PNN. “Step number one is you’ve got to have vigorous treatment of the underlying cause of pain. The arachnoiditis has to be treated. The arthritis has to be treated. The RSD has to be treated. In other words, vigorous treatment of the underlying condition.

“Step number two, there are specific things they can do to slow down the inflammation inside the central nervous system. We know the body makes hormones inside the brain and spinal cord that can reduce the inflammation inside the central nervous system and regrow some of the tissue that’s been lost. People say you can’t do that, but oh yes, you can. There are studies that show this and we see this clinically.”

“I strongly believe that Dr. Tennant's concept of how intractable pain develops and progresses is absolutely correct.  His work in identifying the causes, developing diagnostic criteria, and figuring out a treatment protocol provides what doctors need to know to help people with intractable pain,” says co-author Kristen Ogden, whose husband Louis was treated by Tennant for a complex autoimmune condition.

“Louis' treatment with Dr. Tennant allowed him to improve so much in so many ways. Very effective pain control, greatly improved function and the best quality of life he ever had as an adult.  I am sure that very few people have any idea at all how much a seriously ill pain patient can improve and even regain lost function and capabilities if they have the right medical regimen that meets their needs.”

Tennant retired from clinical practice in 2018, the year after his home and office were raided by the DEA as part of an investigation into his opioid prescribing. No charges were ever filed against him. While Tennant no longer sees patients, he is continuing his research into the treatment of IPS – which notably downplays the use of opioids.

“The answer to opioid use is treating the syndrome rather than just giving symptomatic relief. Opioids are symptomatic drugs,” explains Tennant. “What we’re saying is, identify this and try to treat the condition. Don’t just throw a bunch of symptomatic antidepressants, opioids and other interventions at it. Start trying to look at it physiologically and pathologically, and treat it like we do other syndromes.”    

To learn more about the Tennant Foundation’s Intractable Pain Syndrome Research and Education Project, click here. 

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Nitrous Oxide Safe for Labor Pain, But Few Women Stick With It

By Pat Anson, PNN Editor

A new study is touting an older form of anesthesia for women going through labor pain. Researchers at the University of Colorado College of Nursing say nitrous oxide – commonly known as laughing gas – is a safe and effective option for pain relief.

Their study, published in the Journal of Midwifery & Women's Health, is based on a survey of 463 women who used nitrous oxide (N2O) during labor.

"Nitrous oxide is a useful, safe option for labor analgesia in the United States. And for some laboring mothers, that's all the pain relief they need,” said lead author Priscilla Nodine, PhD, a Certified Nurse-Midwife and Associate Professor with the University of Colorado College of Nursing.

Nitrous oxide was once widely used in American hospitals to relieve labor pain, but it fell out of favor as more Caesarean sections were performed and women opted for epidural injections and spinal blocks, known as neuraxial analgesia.

Some hospitals are now reintroducing nitrous oxide as a safer and less invasive option. The inhaled gas helps reduce anxiety and makes patients less aware of their pain, but does not eliminate it. 

While side effects from nitrous oxide were rare (8%), less than a third of the women studied stuck with it. Sixty nine percent wound up using neuraxial analgesia or opioids during labor. The reason most often cited (96%) for converting from N2O to another therapy was inadequate pain relief.

Women who had previously given birth vaginally were more likely to stick with nitrous oxide, while those who had a Cesarean section were six times more likely to use neuraxial analgesia. The odds of conversion from N2O tripled when labor was induced or augmented with oxytocin, a hormone that helps women bond with the baby and stimulates milk production.

“Understanding predictors of conversion from inhaled nitrous oxide to other forms of analgesia may assist providers in their discussions with women about pain relief options during labor," said Nodine.

The findings are similar to a 2019 study, which found that nearly 70 percent of the women who tried nitrous oxide switched to an epidural or another pain management method.  

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

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

“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.”

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

Arachnoiditis Nearly Destroyed My Life

By Robert Perry, Guest Columnist

I was a pipe welder when I first hurt my back in 1992. The doctor ordered a myelogram imaging test on my back with a chemical dye. It was one of the most painful tests I ever had. After the test the doctor told me I had to learn to live with my pain. At that time, I was only 27 years old. The doctor told me I might be able to work for another 15 years.

He was right about that. In 2008, I was a project manager at ATT and started losing the ability to use my legs. One day I couldn’t get out of bed for about 3 hours because I was having so much pain in my legs and lower back. I was screaming from the pain and the muscles spasms were so bad it made me cry.

I started falling at work and hurting so bad it was unreal, so they did an MRI on me and found I had Arachnoiditis. Since then my life has been a hard road. It’s unreal how many doctors don’t know anything about this disease. One doctor did 5 epidural steroid injections on me and made it worse.

Another doctor put a spinal cord stimulator temporarily in my back to see if it would help, but he accidentally punctured my spine and left an air bubble. I went home and late that night got a terrible headache that felt like it was killing me. My ex-wife and kids took me to the emergency room. I was about to die from the bubble in my body.

They finally found the bubble in my body by cat scan. The only way you can get a bubble out is to remain really calm, so they started giving me a strong painkiller in an IV drip.  But the nurse wasn’t paying attention and I overdosed. I knew I was dying and thank God that a person came in to clean my room and I got her to go get help.

ROBERT PERRY

I had her call my family on my cell phone. I was able to tell my family goodbye. Right after that, I lost consciousness. I finally woke up 8 hours later and the doctor was waiting on me to ask me things to see if I had any brain damage. The first thing I asked was for my dad, but I couldn’t remember that my dad was dead until they told me.

I have been through a lot because of Arachnoiditis. I lost my family and now I am married to a wonderful lady who knows I am a very sick person.  This disease is the one of the most painful. I have to take two shots a month and I am on a lot of meds. I have a good doctor now who put me on a fentanyl pain patch and my life has been a lot better.

I am a preacher and have a lot of faith. One night at church I was in so much pain the congregation was about to take me to the hospital. And I told God that night either heal me or take me. They prayed over me and I walked out of the church without any pain or my cane.

That’s was 5 years ago and I am still doing a lot better and able to live now. The doctors can’t help, but God can. I am very thankful for that night in prayer.

Arachnoiditis nearly destroyed my life. I hope they one day find a cure for this terrible disease. Before God touched me that night, I was about ready to take my life because of the pain.

Robert Perry lives in Kentucky.

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

Non-Profit Offers Free Stem Cell Therapy to Veterans

By A. Rahman Ford, PNN Columnist

No group is more worthy of the revolutionary benefits of stem cell therapy than America’s military veterans. While the U.S. Department of Veterans Affairs (VA) thinks “the field is in its infancy and much more research is needed” before stem cells are offered as treatment, brave practitioners are stepping forward to help veterans NOW.

Dr. Joseph Kanan and his staff at the Tullahoma Chiropractic Center are providing free stem cell therapy for veterans who suffer from chronic pain. Kanan – in partnership with Veterans in Pain – recently performed his first pro bono procedure on a veteran named Ryan, who has severe hip pain. Stem cell injections into Ryan’s hip, which are not covered by insurance, normally would have cost $6,500. Ryan got them for free.

“I think veterans do a lot for our country and there are very few doctors that are performing medical procedures like this,” Kanan told The Tullahoma News. “We were very glad to be able to do this for him.”

Kanan says his Tennessee clinic performs stem cell therapy for veterans twice a month and has had good results so far. One patient was able to avoid a knee replacement and reported consistent improvement one year after the procedure. Patients can expect to experience 10 percent improvement every month for 10 months.

Veterans in Pain is a non-profit that connects military veterans with civilian physicians who provide free regenerative medicine treatments for chronic pain. VIP has provided $250,000 worth of services since 2019.

(Update: Veterans in Pain no longer directly links individual veterans with stem cell providers. The organization’s focus has shifted to advocacy — specifically changes in legislation to make stem cell therapy more accessible to veterans.)

VIP founder and president Micaela Bensko is herself a stem cell therapy recipient. She spent years in a wheelchair after an accident in her driveway left her with severe spine damage that led to arachnoiditis, a chronic inflammation of spinal nerves. A friend suggested stem cell therapy, which inspired Bensko to establish VIP as a resource for veterans. 

Veterans in Pain connects each veteran with a volunteer physician in their area. If one cannot be located, the cost of transportation and accommodations are covered for treatments, as they were for Ryan. Veterans associated with VIP visit schools, organizations and corporations sharing their story of recovery. Most of VIP’s funding is provided by small individual donations, grants and grassroots fundraising. 

According to the National Institutes of Health, nearly two-thirds of veterans report having chronic pain, with about 9% having severe pain. Chronic pain among veterans is closely associated with mental health conditions such as depression, anxiety, poor sleep and substance abuse disorders. Many veterans suffer from more than one condition.

Because of red tape and a shortage of pain management specialists at the VA, many veterans suffering from chronic pain are left devoid of proper diagnosis and treatment, causing many to self-medicate or search for answers on their own.  Chronic pain can lead to substance abuse, a common and growing trend among veterans. A 2017 study found that 30% of military suicides were preceded by alcohol or drug abuse.

The dire plight of military veterans suffering from chronic pain is yet another compelling reason for the FDA to loosen its regulation of stem cell therapy. Our heroes are counting on it.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China.

Patients with Arachnoiditis and Ehlers-Danlos Need Adrenaline for Pain Control

By Dr. Forest Tennant, PNN Columnist

In this era of opioid controversy and tragedy due to forced opioid reduction, the scientific information on adrenaline-type agents can help control constant, intractable pain and help reduce opioid use.

Overlooked in the opioid controversy is the key point that an adequate supply of adrenaline-related neurotransmitters – such as dopamine and norepinephrine – are necessary in the brain and spinal cord for pain relief. Unfortunately, constant intractable pain depletes the natural supply of endorphin, dopamine, adrenaline and noradrenalin, and their levels must be replaced to adequately control pain.  

Persons with a severe, intractable pain condition like Adhesive Arachnoiditis (AA) and/or a genetic connective tissue disorder like Ehlers-Danlos syndrome (EDS) will need an adrenaline agent, also called a stimulant, for pain control, maximal function, keeping opioid dosages stable, and preventing sedation and overdose. 

Adrenaline agents have long been known to boost or potentiate opioids, enhance pain relief, and allow less opioid to be used. A study by this author found that the simultaneous use of a stimulant and clonidine lowered opioid dosage by 30 to 50 percent. 

The use of a stimulant in this manner is not new. In the 1920’s, physicians at the Royal Brompton Hospital in London found that a stimulant was a necessary ingredient in the famous “Brompton Cocktail” for relief of severe pain. Today, modern pain relief agents often add caffeine as a stimulant to make the codeine and oxycodone more potent.

Most observers believe that an adrenaline agent given to an intractable pain patient will automatically raise blood pressure and pulse rate. This is generally a myth, because the person with intractable pain often depletes their reserve of dopamine, noradrenalin and adrenaline.  

The use of an adrenaline agent will serve to replace these depleted neurotransmitters and will not generally cause blood pressure and pulse rate to rise. Periodic monitoring is, however, recommended to be continued.  

Multiple Benefits  

A person with intractable pain due to AA, EDS, Reflex Sympathetic Dystrophy (RSD), or another severe and tragic condition will usually have the following conditions – all of which will benefit by an adrenaline agent:

• Weight Gain

• Attention Deficit Disorder (ADHD)

• Depression

• Sedation

• Fatigue

• Memory Loss

Descending Pain

Recent research has learned that constant, intractable pain establishes a “biologic battery” in the brain and spinal cord. This “battery” sends electric currents down the autonomic (non-spinal cord nerves) nervous system. Symptoms of this descending pain include excess heat, muscle spasms, jerking, tremors, sweating and “all-over” pain.  

In contrast to other forms of pain, descending pain isn’t well controlled by opioids and anti-inflammatory agents. The drugs clonidine and tizanidine are less effective. Only adrenaline agents stop it. Some adrenaline agents for persons with AA and EDS include:

• Phentermine

• Adderall

• Phendimetrazine

• Methylphenidate

• Dexedrine

• Modafinil  

Every person with intractable pain due to AA, EDS, RSD, cancer or other painful disease, should educate themselves on adrenaline agents and discuss them with their medical practitioners in order to either lower their opioid dosage or keep it from escalating.   

Simply stated, a person with intractable pain needs at least a small dose of an adrenaline agent for pain relief and optimal function. 

Forest Tennant, MD, MPH, DrPH, has retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation, and is republished with permission. Correspondence should be sent to veractinc@msn.com.  

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

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

By Pat Anson, PNN Editor

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

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

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

Becky said opioids had saved her life:

BECKY MCCANDLESS

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

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

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

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

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

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

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

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

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

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

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

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

Is Laughing Gas the Best Medicine for Labor Pain?

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

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

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

Praying for a Miracle

By Stephanie King, Guest Columnist

Up until May of 2010, everything was pretty easy going as far as my health was concerned. I was a happily married 22-year old and mother of a sweet one-year old boy. Then one fateful afternoon all of that changed.

There was a bad storm that day but we had to pay bills. My family and I ended up hydroplaning off the road and crashing into trees.

Luckily, our son was unharmed and my husband, while it was bad, suffered nothing worse than a broken leg.

I had the worst of the injuries and needed surgery. I broke my right foot in three places and my back in five. One of those breaks was a compression burst fracture, which means that my vertebrae basically exploded from pressure. 

Unfortunately, I also developed MRSA, a severe and dangerous bacterial infection. This meant packing the open, oozing wounds every day. Instead of getting better, the infection spread through my back and within a couple of months turned into sepsis. Two more surgeries and six months later, I was finally infection free.

A few years later, my pain was increasing due to degenerative disc disease and arthropathy, so my pain specialist started pushing epidural steroid injections. I was already on fentanyl and MS Contin, so I figured I would give it a shot. This would be the biggest mistake of my life.

I ended up having about ten injections. The last one caused extreme levels of pain and my body felt strange that night. I refused to get any more after that. 

Not long afterwards, I began developing neurological pain that I wasn't used to. Sometimes it felt like warm water running down my legs. Sometimes it was stabbing and biting sensations. Sometimes it felt like my bones were snapping. I didn't make the connection between the epidural and the nerve pain. I assumed it was a pinched nerve, because my back was so messed up. 

STEPHANIE KING

Then in the fall of 2016, my inner calves began to go numb. The numbness rapidly spread up my legs and into my groin. My GP admitted me into the hospital and I had an MRI done.

That day I heard the words I will never forget, the words that changed my life forever: Adhesive Arachnoiditis.

It was explained to me that this is a disease where scar tissue is engulfing spinal nerves, blocking the flow of spinal cord fluid because of inflammation of the arachnoid lining around the nerves.

The more I learned about Arachnoiditis, the more I realized I was doomed to a lifetime of unrelenting pain, a level of pain some doctors have compared to that of bone cancer. I learned of the possibility of paralysis. I learned how there is no cure, just medication to try to manage the disease symptoms and slow down its spread.

I was devastated but kept pushing on, ignoring the pain as much as possible.

Just over a year later, I learned something else. My birth control had failed. I was pregnant with our daughter. My pain specialist immediately dropped me. My obstetrician panicked and tried to get me in with another pain management doctor due to fear of a miscarriage.

I kept hearing how no one would see someone who was pregnant and not already an established patient at their practice. I was referred to a neurologist, but he told my doctor that there was nothing that he could give me that would be safe during pregnancy.

During my pregnancy, the Arachnoiditis symptoms increased tenfold. The burning in my feet and hands became unbearable. I'm one of the "lucky" Arachnoiditis patients who has scar tissue far enough up their spine to effect my arms and hands as well. I began jerking uncontrollably and developed tremors. I spent most of my pregnancy crying and screaming.

We have a beautiful daughter now! She is so sweet and smart! Unfortunately, my symptoms never subsided. I still don't have a pain management doctor. No pain specialist will see me.

I fear I was red flagged for doctor shopping, even though it was just my obstetrician trying to get me treatment. I have finally started seeing a neurologist but until he has reviewed all of my MRIs, no treatment will be given. I won't see him again for another month.

I live in never-ending pain. I rely on family a lot to help care for my children while my husband works. I have come to realize I have no good options at this point. I can continue on in pain and being a total burden to my family, just becoming more burdensome over time.

I could turn to marijuana but it is illegal in my state. My children could be taken away and I could go to prison. I could commit suicide but that would scar my children and further hurt the rest of my family. I am stuck.   

There are times I pray for death. I pray for the body I once had. I pray I could be the mother and wife I once was. I pray for anything to make it stop, even for just a little while. I pray for a miracle.

Stephanie King lives in Alabama.

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

The information in this column 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.

An Old Disease Returns in Modern Times

By Pat Anson, PNN Editor

Dr. Forest Tennant may no longer be practicing medicine, but he continues his groundbreaking research into the causes and treatment of adhesive arachnoiditis (AA), a chronic, progressive and painful inflammation of spinal nerves.

Once a rare disease linked in the 19th century to infections such as syphilis and tuberculosis, arachnoiditis is re-appearing in surprising numbers and for completely different reasons. Tennant believes millions of Americans may have developed AA, which is often misdiagnosed as “failed back syndrome” – chronic back pain that fails to respond or grows worse after invasive spinal procedures.

“I think it’s now the number one cause of really severe pain in the country. I don’t think there’s any question about that,” says Tennant. “When I closed my clinic, about 70% of the people in there who had to take high dose opioids had an issue with arachnoiditis.”

Tennant and co-author Ingrid Hollis have written a new book -- “Adhesive Arachnoiditis: An Old Disease Re-Emerges in Modern Times” -- to help doctors and patients recognize the symptoms of AA and to offer hope for treating a disease long thought to be incurable.

Why is AA re-emerging?  Tennant says a “perfect storm” began to appear around the year 2000, when longer lifespans, obesity and sedentary lifestyles contributed to more cases. Lack of exercise has long been associated with chronic back pain.

Arthritis, accidents, repetitive stress injuries and even Lyme disease can also cause degenerative spinal conditions that lead to AA.

“But the real factor contributing is probably sedentary lifestyles. Look at the number of people spending 6 to 8 hours a day in front of a computer or TV screen,” says Tennant. “I’m really trying to bring attention to the fact that people need to be aware that this is something that can happen because of our lifestyles.”

As more Americans sought treatment for back pain, millions were given “interventional” procedures such as epidural steroid injections and spinal surgeries – a trend that appears to have increased as opioids fell out of favor. While most interventional procedures do not result in complications, all it takes is a single misplaced needle or scalpel to damage the spinal cord and trigger a lifetime sentence of AA.

“Everybody wants to blame the epidurals and the surgeries for these problems, but they were only doing these things when there were medical indications for them. And if they do the surgeries and the epidurals, a certain percentage of them are going to get arachnoiditis,” Tennant told PNN.

“There is a risk/benefit to these procedures. If you start going in and operating on the spine or you have half a dozen epidural injections, you start increasing your risk for developing adhesive arachnoiditis. One of the points I want to make is that it is the underlining spinal conditions that are causing the problems. The interventions and the surgeries may accelerate it, but the condition was already set.”

For many years, Tennant was one of the few doctors in the U.S. willing to treat AA patients with high doses of opioids. Intractable pain patients from around the country traveled to California to see Tennant – which led to his home and office being raided by the DEA in 2017. No charges were ever filed against Tennant, but the stress of being investigated led to his retirement from clinical practice.

Tennant now consults with other doctors and is developing new protocols for treating AA with hormones and drugs that reduce pain and inflammation while stimulating nerve growth. His book includes a self-screening test for patients and a list of AA symptoms.

Most essential in any AA diagnosis is a good MRI of the spine. Tennant has a library of over 300 MRI’s sent to him by patients and doctors in dozens of countries — a testament to how AA is re-emerging worldwide.

(Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.)  

Why Do Doctors Keep Pushing Invasive Procedures on Me?

By Mike Emelio, Guest Columnist 

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

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

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

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

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

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

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

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

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

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

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

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

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

Simply put... It has devastated my life.

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

Michael Emelio lives in Florida.

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

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

16 Key Findings about Arachnoiditis

By Forest Tennant, MD, PNN Columnist

We initiated the “Arachnoiditis Research Project” about 6 months ago. Our first goal was to pull together what we have learned to this point. While we continue to gather new information, this short report is an interim attempt to get our findings into the patient and practitioner communities.  

This report is not intended to be a formal protocol or guideline, but a way to pass on what we have found and determined during the course of our learnings.  Please keep in mind that research is neither static nor absolute.  In the future, newer findings will likely both clarify and expand upon our initial findings as presented in this report.    

Frankly, the response to the Arachnoiditis Research Project has been overwhelming. Each day we receive inquiries from patients and practitioners. Patients want help. Practitioners want to know what to do.

We have now reviewed over 300 MRI’s of Adhesive Arachnoiditis (AA) cases. We have received inquiries from 5 continents and over 17 countries. One thing is clear. The need to research and identify treatment for AA is here.  

The goal of our research is to bring AA treatment to every community worldwide. How? By developing both diagnostic and treatment protocols that can be implemented by any medical practitioner in every community. Here is what we have learned so far:

16 Findings about Adhesive Arachnoiditis  

1. Treatment efficacy is best achieved by the simultaneous administration of a three component medication program to suppress neuroinflammation, promote neuro-regeneration (nerve regrowth), and provide pain control to function. Medication for these three categories can be competently prescribed by any primary medical practitioner.  

2. The most common cause of lumbar sacral AA is no longer dural puncture or trauma but intervertebral disc deterioration and spinal stenosis, which has forced cauda equina nerve roots to rub together causing friction, inflammation and adhesion formation.  

3. Although there is no single symptom that uniquely identifies AA, there are a few symptoms that the majority of AA patients will usually have.  A simple 7-question screening questionnaire has been developed to help in identifying potential AA. If a patient answers “yes” to at least four of the seven questions in the test, they should immediately be evaluated by a physician to confirm the diagnosis.  

4. A contrast MRI or high-resolution TESLA-3 or higher MRI can be used to visualize the cauda equina nerve roots and show abnormal swelling, displacement, clumping, and adhesions between clumps and the arachnoid layer of the spinal canal covering.  A greater number and larger size of clumps is generally associated with the most severe pain and neurologic impairments.  

5. Some MRI’s are inconclusive or equivocal even though typical symptoms may be present.  In these cases, therapeutic trials of anti-neuroinflammatory drugs and pain control are warranted.  

6. Spinal fluid flow impairment is common in AA patients and appears to be a cause of headache, blurred vision, nausea, and dizziness.  Obstruction or back-up of fluid can often be seen on an MRI.   

7. Spinal fluid “seepage” throughout the damaged arachnoid layer and wall of the lumbar sacral spine covering is common and can be a cause of pain, tissue destruction and severe contraction that causes restriction of extension of arms and legs.  A physical sign of chronic seepage is indentation of tissues around the lumbar spine.  

8. Pain due to AA appears to be a combination of two types: inflammatory and neuropathic (nerve damage).  It may also be centralized with what is called “descending” pain.  Proper pain control may require medicinal agents for all types.  

9. There is currently no reliable laboratory test for the presence of active neuroinflammation, although certain markers (by-products of inflammation) such as C-Reactive Protein and myeloperoxidase may sometimes show in the blood.  Neuroinflammation may go into remission, but it may also act silently to cause progressive nerve root destruction.  

10. Basic science and animal studies show the neuro-steroids (hormones made inside the spinal cord) have the basic functions of neuroinflammation suppression and neuro-regeneration stimulation.  Our observations clearly indicate that the patients who have improved the most have taken one or more of the hormones reported to reduce neuroinflammation and promote and support neuro-regeneration.  

11. Patients who have had AA for longer than 5 years must rely on aggressive pain control to function and achieve recovery.  After a long period of untreated neuroinflammation, scarring of nerve roots is too severe for much regeneration to occur.  

12. The drugs and hormones required for suppression of neuroinflammation and promotion of neuro-regeneration do not need to be taken daily to be effective and prevent side effects.  Medical practitioners have a choice of agents, and they can be competently prescribed by primary care practitioners.  We have found that three times a week dosing is usually quite sufficient.

13. Persons who have developed AA without warning, trauma or chronic disc disease have often been found to have a genetic connective tissue disorder of which the most common are Ehlers-Danlos syndromes.  

14. Cervical neck arachnoiditis is primarily a clinical and presumed diagnosis as there are no nerve roots to clump and observe on MRI.  The key MRI finding is spinal fluid flow obstruction and the major clinical symptom is extreme pain on neck flexing.  

15. Only ketorolac among the anti-inflammatories, and methylprednisolone among the corticoids are routinely effective in AA.  Other anti-inflammatories and corticoids either do not cross the blood brain barrier or therapeutically attach to glial cell receptors.  

16. Some seemingly unrelated compounds found to suppress microglial inflammation in animal and invitro studies also appear to have therapeutic benefit as neuroinflammatory suppressors in AA patients.  These include pentoxifylline, acetazolamide, minocycline and metformin.

The Tennant Foundation has also released an enhanced protocol for primary care physicians who treat AA patients. You can find the protocols and research reports on our website.

Forest Tennant, MD, MPH, DrPH, has retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

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.

3 Advances in Hormonal Pain Care

By Forest Tennant, MD, Guest Columnist

There are three new discoveries or innovations in hormonal pain care that I dearly love. I believe they are real trend-setters, but keep in mind that the “next big thing” may not endure.  Nevertheless, I’m so excited about these three newcomers to the hormone and pain care movement, that I wish to share them.

Hormone Derivative Treatment

Some really smart scientists know how to make derivatives or analogues out of the “real McCoy.” Why do this? Because the derivative can boost the potency of the basic hormone several fold. 

There are two hormonal derivatives that, in my hands, have been extremely beneficial to sub-groups of chronic pain patients.  The first is medroxyprogesterone, which is a derivative of progesterone.  In my experience, medroxyprogesterone is far more potent in treating intractable pain patients than is plain progesterone. 

I have administered medroxyprogesterone to intractable pain patients and most found that it reduced their pain and their need for opioids.  The causes of intractable pain in these patients were multiple and included Lyme disease, post-traumatic headache, post-stroke and arachnoiditis. We have often made a topical medroxyprogesterone (skin massage) cream for use over arthritic joints and over the lumbar spine of adhesive arachnoiditis patients.

The second hormone is nandrolone, which is a derivative of testosterone.  When a derivative is made from testosterone, it is often called an “anabolic steroid” because it grows tissue.

Anabolic steroids have a generally pejorative or negative view since they have been used to grow the muscles and nerves in athletes that wish to gain athletic advantage.  Don’t be too offended by the term.  After all, the pain patient needs to grow some nerves and muscle to relieve pain. 

The U.S. Food and Drug Administration has approved nandrolone for use in “wasting” or “catabolic” conditions that cause tissue degeneration.  Many severe pain patients qualify.  A big problem today in pain practice is the Ehlers-Danlos syndrome (EDS) patient whose nerves, muscles and connective tissue genetically and progressively degenerate. Nandrolone is proving to be a Godsend to some of these suffering individuals. 

One really good thing about the derivatives medroxyprogesterone and nandrolone is that patients can safely try these hormonal agents for only a month to see if they get a positive response.    

Medrol Test

Medrol is the commercial and best-known name for the cortisone derivative methylprednisolone. It’s an old drug, but ranks as a top-notch newbie because it is the cortisone derivative that best crosses the blood brain barrier and suppresses neuroinflammation. 

To date, we don’t yet have a reliable blood test to determine if there is neuroinflammation in the brain or spinal cord, but it is essential to know if active neuroinflammation is in the central nervous system (CNS). 

Step one on the mending road is to suppress and hopefully eliminate neuroinflammation.  A Medrol test is, in my experience, your best bet to know if you have active neuroinflammation.  There are 2 ways to take the Medrol test.  One is to take an injection of Medrol for 2 consecutive days.  The other is to obtain what is a 6-day dose pack.  You take a declining dose of Medrol over a 6-day period.  All MD’s, nurse practitioners and physician assistants are familiar with the Medrol dose pack. So ask for it.   

Here’s the payoff.  If you feel better with less pain and better physical function, appetite and sleep, you have just determined that you have active neuroinflammation that is not only causing pain today but will worsen your condition in future days. 

If you have active neuroinflammation, you will need to start medicinal agents that are known to suppress neuroinflammation.  If your Medrol test is negative -- meaning it didn’t reduce your pain or improve other symptoms -- it means you don’t have much neuroinflammation and that your pain is due to nerve damage and scarring.  In this case you will have to rely on symptomatic pain relievers and perhaps try some long-term neuro-regenerative anabolic hormones to hopefully regrow or revitalize some nerve tissue.  

Hormonal Extracts

Years ago, including the days of the medicine man and shaman, extracts of whole glands, particularly the adrenals, gonads, pancreas and thyroid, were given to the sick.  In the early part of the last century, this practice was known as “glandular medicine” and whole gland extracts were administered by practicing physicians. Many a person today still finds that an extract of thyroid (made by the Armour Company) is superior to a single component of the thyroid gland or a synthetic thyroid. 

Some commercial companies have brought back whole adrenal and gonadal extracts.  These extracts are non-prescription and are starting to be used by chronic pain patients.  To date, they appear to be essentially void of complications or side-effects. Some chronic pain patients are reporting positive results for pain reduction and improvement in energy, appetite and sleep.  They are a safe, inexpensive way for patients and physicians who don’t like steroids or cortisone.

Hormonal treatments for chronic pain patients are fundamentally essential if a chronic pain patient wants some curative effects. 

Although hormones are a great advance, with more progress to come, they will never be a total replacement for symptomatic care with opioids, neuropathic agents and medical devices. Many long-term intractable pain patients have damaged and scarred nervous systems that neither hormones nor other known treatment can cure. 

“Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year.”

— Dr. Forest Tennant

Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year with a six-hormone panel.  You should replenish any hormone that is low in the blood stream. 

The hormone oxytocin has, as one of its natural functions, pain relief.  It is an excellent short-term pain reliever that can be taken with other symptomatic pain relievers to avoid an opioid.  There are other hormones made in the CNS that protect nerve cells by suppressing neuroinflammation and then regenerating them. To download a full copy of my latest report on hormones and pain care, click here.

Hormones and their derivatives are beginning to be used by chronic pain patients.  All chronic pain patients can and should ask their medical practitioners for a short-term therapeutic trial to find one that fits them.  While one size doesn’t fit all, all can find one size that does fit.  It’s the way forward.  

Forest Tennant, MD, MPH, DrPH, recently retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

The Tennant Foundation has updated its free handbook for patients and families living with adhesive arachnoiditis and intractable pain. The handbook features the latest groundbreaking research on hormones and pain care. To see and download a copy, click here.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

Human Rights Watch: CDC Guideline Needs Revision

By Pat Anson, PNN Editor

Federal and state efforts to reduce opioid prescribing have harmed pain patients across the country and caused many doctors to arbitrarily cutoff or taper patients who need opioid medication, according to a new report from Human Rights Watch.

“Not Allowed to Be Compassionate” -- a 99-page report by the New York based non-profit -- highlights the many unintended consequences of the 2016 CDC opioid guideline, which discourages doctors from prescribing opioids for chronic pain. The report recommends the CDC revise the guideline to explicitly state that patents should not be involuntarily tapered off opioids and that some patients may require high doses.

“Many individuals with chronic pain are being involuntarily tapered from essential medicines that are vital to their daily functioning, depriving them of their right to health,” the report found.

“Health care providers in some cases are even turning away such individuals, insurance companies and programs are refusing coverage, and state governments are preventing physicians from using their medical judgement to provide appropriate care.”  

Although voluntary and only intended for primary care physicians, the CDC guideline has been widely adopted by regulators, law enforcement and insurance companies, with little or no effort made to measure its impact on pain patients and the quality of their care.

One of the most surprising things Human Rights Watch learned, according to researcher Laura Mills, is how little the government knows — or is willing to say — about cutbacks in opioid prescribing.  

“We went into this report hoping we’d be able to find some data. And what we found is, if there is data, none of it has been published,” Mills told PNN. “We don’t know how many people committed suicide. We don’t know how many people are alive or dead within a year of tapering. We don’t know how many people are hospitalized.

“And that’s a huge risk because essentially we’re letting dramatic policy changes take effect very quickly. Many of these may be justified, but we aren’t measuring in real time what’s happening. At least none of these organizations are doing it in a way that’s public.”

‘Agonizing Pain Like Torture’

The report tells the story of Maria Higginbotham, a Seattle-area woman with an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, they left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves.

Although bedridden and in constant pain, Higginbotham’s doctor is planning to reduce her dose of opioid medication by 75 percent to comply with the CDC guideline.  

“I’m 57 years old and I’m almost completely bedridden due to agonizing pain like torture,” Higginbotham said. “I cannot hold my 15-month-old grandson. I cannot hold my beloved dogs, I can’t bend over to touch them. I cry out in my sleep because I can’t find a way to get comfortable.

“I can barely get myself off of my toilet. Sometimes I have to get off the couch by getting on my hands and knees and pulling myself up because I can’t stand up it hurts so badly.”  

Higginbotham’s doctor told Human Rights Watch he had no choice but to cut her opioid dose, even though he knows the medication is helping her. 

“There’s a lot of talk in the pain medicine world that if you do not get people down to 90 morphine equivalents, you set yourself up for a liability, especially if something were to happen to that patient,” he said. “We still feel like we’re vulnerable to being held liable for patients if they’re over that guideline limit, even when you know they’re not addicted and they’re benefiting (from opioids).”  

You can learn more about Maria Higginbotham and the Human Rights Watch report in this video:

Right to Health

Although the consequences to pain patients like Maria Higginbotham have been “catastrophic,” Human Rights Watch stopped short of calling them a human rights violation.  International law gives cancer and palliative care patients a right to pain management, but it is less clear about non-cancer pain. Chronic pain patients may have a “right to health,” but they don’t have a right to opioids.

“While opioid analgesics are the cornerstone of cancer pain management, these medications do not play a central role in chronic pain management and are, indeed, controversial. The available evidence suggests that effective treatment of chronic pain requires a multidisciplinary approach, using pharmacological and non-pharmacological tools,” the report found.

“Nonetheless, the right to health clearly applies to chronic non-cancer pain patients, as does the prohibition of torture, cruel or degrading treatment or punishment, and some of the same broad principles that apply to pain management for palliative care patients apply to chronic non-cancer pain patients.” 

In addition to a revision of the CDC guideline, Human Rights Watch is calling for better insurance coverage of alternative pain therapies and a new system of metrics that measure not just “crude reductions in opioid prescribing,” but also a patient’s quality of life and quality of pain care.

Former Tennant Patients Get New Doctor

By Pat Anson, PNN Editor

At a time when many pain patients have difficulty finding doctors willing to treat them, some of the sickest and most complicated pain patients in the U.S. have found a new physician. Or to be more precise, she found them.

Dr. Margaret Aranda is treating former patients of Dr. Forest Tennant, a prominent California pain physician who recently retired from clinical practice.  Tennant was seeing about 150 patients with severe intractable pain at his West Covina pain clinic. Most suffer from arachnoiditis, a chronic and painful disease of the spinal cord, and traveled to California from out-of-state because they could not find effective treatment locally.

Tennant, who is 77, is a beloved figure in the pain community. He was forced into retirement after the DEA raided his clinic last year and alleged he was running a pill mill. No charges were ever filed, but Tennant reluctantly agreed to close his clinic on the advice of his lawyer and doctor. That’s when Aranda stepped in and offered to take on Tennant’s patients.

“I feel very happy to be here and to be doing this and to feel qualified to do it because of my experience, my background and my education. But I think the thing I love the most is the connection I have with patients who understand that I’ve been through a lot myself,” said Aranda, an anesthesiologist whose medical career was put on hold for several years while she recovered from a car accident that left her with traumatic brain injuries.

“They just seem be relieved that they can talk to somebody who knows what it feels like. I think Dr. Tennant did that for them too. He wasn’t sick like a lot us were sick, but he carried that empathy with him. I find this to be very spiritual. I feel like I’m in the right place at the right time in my life and everything I went through prepared me for this.”

DR. MARGARET ARANDA

Tennant had success treating patients with an unusual combination of high dose opioid prescriptions, hormones, anti-inflammatory drugs and other medications, which Aranda plans to continue.

“I’m working to decrease the opioids as much as possible. For some patients that’s totally impossible, for others it’s not,” she told PNN. “I really think what we’re doing is redefining palliative care. I tell people this isn’t a pain clinic. This is a ‘keep you out of a wheelchair’ clinic. Keep you in the family. Keep you getting out of your house here and there.”

“Dr. Aranda is very intelligent and picked up on the scientific precepts of this disease and other things very rapidly,” says Tennant. “I was tickled to death the way she’s caught on to all this and knows how to carry on everything I was doing. Plus, she’s improving a lot of things I was doing.”

Under a Microscope

Aranda admits being a little worried about being scrutinized by the DEA.

“Of course, that would be the natural inclination I think for anyone in my field. It’s a little bit scary to walk in the shoes of a man who is so well known and beloved by everyone and had issues with the DEA I think most people felt were unfounded,” Aranda said.

“I am of course very concerned that they could be looking at me with a microscope. Or a double and triple microscope. But I think they already know our patient population and they now understand that we do have some of the sickest patients in the country. That’s why they come to us from all over. And so, we’re just careful.”

While Tennant operated his clinic basically as a charity, Aranda is “cash only” and will not accept medical insurance.  She is temporarily seeing patients at a clinic in Malibu but is looking for a permanent location.

Like Tennant, Aranda is willing to treat patients from out-of-state, including those who suffer from severe intractable pain. Patients interested in seeing Aranda can reach her at (800) 992-9280.   

DR. FOREST TENNANT

As for Tennant, he’s not quite ready to retire completely. He plans to continue researching arachnoiditis, a progressive and incurable disease that often begins when the spinal cord is damaged during surgery or punctured by a misplaced 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.

Arachnoiditis is poorly understood and often misdiagnosed as “failed back syndrome.” Tennant estimates as many as a million Americans may have it. Few doctors are trained to recognize the symptoms or know how to treat it.

“I’m going to be spending my time trying to research and educate on arachanoiditis. I think it’s the biggest, most severe pain problem we have,” says Tennant. “Before I hang up my spurs totally I want to make sure arachnoiditis is known to every family doctor and nurse practitioner in every community in the country.”

Betrayed by My Doctors and My Government

By Jeff Watt, Guest Columnist

I was a nurse and that career gave my life purpose.  I felt like I was making a difference in my patients’ lives.  However, in October of 2014, the healthcare system that employed me destroyed me.

I was experiencing stiffness in my neck and had some red spots on my legs.  I also had a fever that broke the night before.  That was it. 

Unfortunately, because I went to the ER to figure out what was going on, they decided to do a spinal tap.  The physician attempted 3 times and failed, so another provider was called in, who did another two attempts before finally placing the needle. 

JEFF WATT

The next day, I got the most agonizing headache of my life.  When I went back to the ER, they found the reason was a spinal fluid leak caused by all the failed attempts to collect spinal fluid.

The treatment for spinal headaches is to do an epidural blood patch, which includes another spinal puncture.  The first blood patch was placed in the wrong place, so the headache returned.  It took a second blood patch, and then ANOTHER spinal puncture to have it placed correctly and to make the headache go away.

Shortly after, I started experiencing sharp shooting pains down my right leg, causing extreme constant pain and causing me to collapse, unable to bear my own weight. 

I returned to the ER and they sent me to see a neurologist, who did an MRI and a number of other tests, in the end diagnosing me with a condition called arachnoiditis.  This is a progressive disease caused by scar tissue in the arachnoid space of the spinal cord clumping together and pinching the nerves, 24/7.  Arachnoiditis is progressive, a condition that only worsens and is incurable.  It has been described as pain as bad as that of cancer, but without the release of death.

Over the last 3 years since my injury, I have lost my job, friendships, and the ability to do sports and activities with my wife.  I have experienced increased shooting pains and weakness in my right leg, loss of bladder and bowel function causing me to wear adult briefs, balance issues, sexual dysfunction issues, and the list goes on.

Numerous specialists couldn’t provide a treatment to alleviate my pain.  I tried medication after medication with the same result -- until I was prescribed extended relief morphine and oxycodone.  These medications controlled my pain enough that I was able to get out to do events, to help out at home doing laundry and dishes, and gave me back a quality of life that I didn’t have.

In the last 6 months, I have been forced to completely taper off of these medications because of a set of guidelines released by the CDC. 

The so-called opioid “epidemic” has made persistent pain patients like myself collateral damage in the government’s attempts to stop deaths from overdosing.  The CDC even admitted it mistakenly included legal prescription opioids in the same data as overdoses caused by illicit fentanyl from China and other synthetic opioids.

I now spend my days in severe unrelenting pain.  Alternative medications prescribed by my doctor have done nothing.  I feel as though I have been abandoned and betrayed by my doctors, and my government.  My doctor is supposed to help and do no harm, and my government is supposed to do what is in the best interest of the people they represent, including patients who are dependent on opioids to give them a quality of life.

If the government is truly concerned about people’s deaths, perhaps it should look into the increase in suicides by patients who suffer from persistent pain.  We deserve effective and compassionate treatment of our pain.

Jeff Watt lives in Oregon.

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.