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. 

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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

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.

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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.)  

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.  

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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.

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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.

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

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.

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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.