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.

A Bad Bill That Won't Fight Opioid Addiction

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

By Denise Molohon, Guest Columnist

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

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

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

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

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

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

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

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

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

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

It needs to stop. Today. 

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

This needs to change.

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

It truly is that simple. 

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

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

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

BioWave Device Helps Vietnam Vet with Chronic Pain

By Pat Anson, Editor

A few months ago, Vietnam veteran Gregg Gaston was depressed and suicidal. Gaston shared his story with PNN readers in a guest column, telling how he suffered from years of chronic pain caused by a failed back surgery, peripheral neuropathy and post-traumatic stress syndrome (PTSD).

Despite his pain, Gaston’s doctor told him he was being cut back to a single dose of tramadol, a mild opioid analgesic. That was the last straw for Gaston, who at the age of 62 was fed up with debilitating pain and doctors who no longer wanted to treat it with opioids. In protest, Gaston fired his doctor and refused to fill his last prescription for tramadol.

GREGG GASTON

“I've given up and am waiting now to die. I've lived a great life and have no expectations of my quality of life improving,” Gaston wrote.  “Common sense is fast disappearing. I'm done fighting.”

Fast forward three months and there’s been a remarkable change in Gaston’s mood and quality of life. The folks at BioWave, a Connecticut medical device company, saw Gaston’s column and sent him one of their neurostimulation units, which use high frequency electrical impulses to block pain signals.

“I was skeptical at first. I really was,” Gaston says. “Being at the breaking point and feeling desperate, I was only too eager to try it. And for me, it really works. I’m not 100 percent pain free, but I can get out of bed in the morning. It’s great, it really is.”

Before he started using BioWave, Gaston says his pain level was usually a 7 or 8 on the pain scale. Today, even on a bad day, it’s only a 3.

“If you have chronic pain you know what a difference that is,” he says. “I used to often sleep no more than 2 hours at a time, now I often sleep through the entire night.”

Think of BioWave as a more advanced version of a TENS unit. Electrodes wired to a battery and control unit send two high frequency signals through the skin into deep tissue, where they stimulate blood flow and block pain signals.

Each treatment takes 30 minutes, and the pain relief can last anywhere from a few hours to a few days, depending on the patient and their condition.  

“I started using it several times a day. But as I got feeling better in my back, I dropped it down to once a day. Now it’s once every two or three days,” says Gaston, who takes no pain medication outside of an aspirin. “They saved my life. My quality of life is still not great, but it’s better than what it was.”

BIOWAVE IMAGE

BioWave has been around for a few years but is not widely known. It was first used by professional sports teams to treat athletes with sprains, tendonitis, muscle pain and other injuries. When it proved effective in treating chronic pain, dozens of pain clinics and VA hospitals started using BioWave devices.

BIOWAVE IMAGE

“Most of the treatments deal with chronic pain and I would say the majority deal with lumbar and cervical pain. That’s probably the bread and butter for our device, but certainly any extremity pain in the shoulder, elbow, elbow, wrist or ankle. We can really treat almost any location on the body,” says Brad Siff, BioWave’s founder and president.

The company says over 75% of patients respond to BioWave treatment, with a significant improvement in their pain scores, mobility and stiffness. The device can even help patients with complex conditions such as arachnoiditis, a chronic and incurable spinal disease.  

“There’s a handful of anecdotal data that we have where arachnoiditis patients have responded. Similarly, patients with failed back surgery have been treated with BioWave and it helped them," Siff told PNN.

"I’m not saying it reduces their pain 100 percent, but some may get a 30, 40, 50 percent reduction in their pain and it lasts for a long period of time following the treatment."

BioWave is currently available only by prescription, but later this summer the company hopes to get FDA approval for a wearable over-the-counter home unit that can be purchased directly by patients. The final pricing hasn’t been determined, but Siff expects it to be between $300 to $400.

For more information, you can visit BioWave at their website by clicking here or by emailing them at info@biowave.com.

My Arachnoiditis Family

By Elaine Ballard, Guest Columnist

I live in the rural county of Somerset in England, UK. At the age of 22, I had a sporting accident which eventually left me 80 percent disabled and unable to lead a normal life. 

The accident caused several crushed discs in my spine and a great deal of nerve damage. Over the years multi-level disc degeneration set in, as well as osteoarthritis. I am unable to use a wheelchair, as bulging discs prevent me from sitting without severe pain. I am now 73.

ELAINE BALLARD

Since 1994, I have been confined to lying on a bed in my living room and only leave home to keep hospital appointments. I travel by stretcher ambulance.

Just over two years ago I had an MRI scan which showed I had Adhesive Arachnoiditis (AA) and my life changed drastically yet again. 

Arachnoiditis is listed as a rare neurological condition, but in fact many thousands of people all over the world have been diagnosed with it. There are also thousands of other people who have the same symptoms, but as yet, no diagnosis.

It is difficult for patients to get diagnosed as doctors are not trained to recognize this disease and often fail to even recognize the symptoms.

Arachnoiditis results from severe inflammation of the arachnoid membrane that surrounds the nerves of the spinal cord. It may cause stinging and burning pain, as well as muscle cramps, spasms, and uncontrollable twitching. The most common symptom is severe to unbearable neurological pain, especially to the nerves connecting to the lower back, legs and feet. This can lead to tingling, numbness, weakness and severe pain in the legs and feet.

Other symptoms include sensations that feel like insects crawling on the skin or water trickling down the legs. It can also affect the bladder, bowel and sexual function. Unfortunately for some, it may also result in paralysis.

As this disease progresses, the symptoms can become more severe or even permanent. Most people with Arachnoiditis are eventually unable to work and suffer significant disability because they are in constant pain. Pain is the most dominant factor and it is both chronic and acute. As the disease progresses, it can be relentless and unbearable and sadly suicide becomes an option.

Inflammation of the arachnoid membrane can lead to the formation of scar tissue, which may cause the spinal nerves to clump together and eventually adhere to the lining wall of the dura, the middle layer of the spine. The disease can then progress to Adhesive Arachnoiditis.

What Causes Arachnoiditis

There are a few different causes of Arachnoiditis. In the 1970's a dye used in myelograms was injected during spinal procedures directly into the area surrounding the spinal cord and nerves. The dye was too toxic for these delicate parts of the spine and was blamed for causing Arachnoiditis. This dye continues to be used in some parts of the world.

Bacterial infections and viruses in the spine can also lead to Arachnoiditis. So can complications from spinal surgery and invasive spinal procedures such as epidural steroid injections.

There is no cure for Arachnoiditis and there is little effective pain relief. This is a disease or condition for life. Opioids are offered by doctors, but are not specific to reducing neurological pain of this nature.

It is very sad and cruel that opioids are being clamped down in America and that Arachnoiditis patients are being classed together with people who seek drugs for recreational purposes. We are not drug seekers but desperate victims crying out for something that will stop this relentless and overwhelming neurological pain.

The Facebook support group Arachnoiditis Together We Fight has been an important part of my education in understanding this disease. I am thankful to say it has become more of a family, where members can come in and gradually feel at home while we bring education, support and encouragement. This family atmosphere and great support has saved many lives, as people first arrive feeling suicidal and lost in a medical world that will not help them.

That is why I wrote this poem to show people how important support groups can be and to bring more attention to this rare but life changing disease.

"The Family"

By Elaine Ballard

Lonely, fearfully I knock at the door
Arac greets me, a smile, so kind
I want to die, eyes keep to the floor
"Welcome" she says, but what will I find?

"Welcome" repeated again and again
"Good to have you!" Are you kidding?  
"Family" really can it be true? 
Lost, lonely, rejected... what you too? 

I tell my story, they will never believe
"We understand, you're not alone"
Tears trickle down, I cannot believe
We are bound together by this dreaded disease

Files, inflammation, medication
Head's in a spin, where do I begin?  
Then a hand upon my shoulder
Guides me to those precious folders

Questions answered, hope is rising
Found some friends, pain subsiding
Flares still come but under control
No longer afraid nor out in the cold

We need each other, your pain is mine  
Strength in unity, love is the sign
Moving forward we are free
To Fight Together as one FAMILY

Elaine Ballard has written a book about Adhesive Arachnoiditis and how her Christian faith helped her through many difficult flares and times. It is called “The Furnace of Fire” and is available on Amazon. Click on the book's cover to see price and ordering information.

Pain News Network invites other readers to share their stories (and poems) 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.

The Difference Between Intractable and Chronic Pain

By Forest Tennant, MD, DrPH

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

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

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

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

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

The cause of “intractability” is two-fold:

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

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

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

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

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

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

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

5 Things to Know About Epidural Steroid Injections

By Margaret Aranda, MD, Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doctor Makes California Pain Clinic a Special Place

By Kristen Ogden, Guest Columnist

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

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

COURTESY CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transforming Pain Care

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

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

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

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

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

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

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

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

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

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

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

What You Need to Know About Chronic Pain

By Sarah Elizabeth Hirschle, Guest Columnist

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

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

I share for awareness, not pity.

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

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

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

A few things to know about chronic illness and pain:

SARAH ELIZABETH HIRSCHLE

• The pain causes depression and depression causes pain.

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

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

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

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

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

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

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

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

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

West Virginia Moves to Stop Opioid Madness

By Kenny Brooks, Guest Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Can Stem Cells Treat Arachnoiditis?

By Pat Anson, PNN Editor

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

sara bomar davis and husband george

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

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

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

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

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

Or is it?

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

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

Stem Cells as “Seeker Hunters”

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

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

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

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

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

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

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

sara and daughter anna

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

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

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

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

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

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

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

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

More Clinical Studies Needed

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

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

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

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

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

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

Studies Promote Epidurals Without Explaining Risks

By Pat Anson, Editor

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

First, about those studies.

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

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

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

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

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

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

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

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

“The blind insertion of the epidural during birth is basically playing roulette for spinal damage. Normally birthing mothers are told the only side effect possible during epidurals is a spinal headache that lasts a few days. True informed consent is missing from the equation,” says Gonzalez.

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

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

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

She thinks there are better and safer alternatives.

“Laughing gas, Lamaze, hypnotism, meditation, water birthing and even some medications are the absolute safest and most effective forms of labor pain relief. Every woman deserves to know that when she opts for any kind of invasive spinal anesthesia, the risks are very grave and by far much more common than anybody realizes,” Gonzalez says. “We have a tendency to think it will ‘never happen to me,’ but you do take very serious risks for yourself and your child when opting for an obstetric epidural.”

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

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