Our books are available through Amazon, Lulu, E-Kindle, etc. They are highly recommended for patients and family of those with adhesive arachnoiditis.
JUST RELEASED APRIL 2021 – The Strange Medical Saga of Howard Hughes
Adhesive Arachnoiditis: An Old Disease Re-Emerges in Modern Times
Handbook to Live Well With Adhesive Arachnoiditis
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Adhesive arachnoiditis (AA) is an inflammatory disease of the lower spinal canal that involves cauda equina nerve roots and the arachnoid-dural covering (meninges) of the spinal canal. While once a rare disease, it is now emerging in every community. Diagnostic and treatment protocols have been developed and are presented here. A clinical profile of 80 MRI-confirmed cases show that AA is primarily a disease of mid to late-age females. The most common underlying cause is a structural disorder of the spine. Genetic connective tissue/collagen disorders of the Ehlers-Danlos Syndrome type appear to be the second most common cause of AA. Multiple surgeries and spinal interventions were common in these cases. A symptom profile of AA is quite uniform and includes pain relief on change of position, jerks or tremors in the legs, urinary dysfunction, and sensations of insects crawling or water dripping on the skin. Treatment specifically directed at suppressing neuroinflammation, promoting tissue regeneration, and providing aggressive pain management Is the most successful approach for halting the progression of the disease, restoring function, and enhancing patient quality of life.
Astute observers have long recognized that a sub-group of persons with chronic pain develop constant pain accompanied by such severe impairment of physiologic and psychosocial functions that the person is incapacitated and may suffer an early death. There have even been calls to label this occurrence a “disease”. Over the past 5 decades this subgroup of chronic pain patients has often been labeled “persistent” or “intractable”. This recognition has had enough merit that the latest International Classification of Disease (ICD-10) now lists intractable pain as a separate condition with its own identification number. Based on recent research it is most appropriate and accurate to diagnose certain individuals as having the Intractable Pain Syndrome (IPS). This syndrome is not a symptom or disease, but a complication of an underlying, painful disease or injury that produces excess electrical impulses that travel into the brain and spinal cord (central nervous system or CNS) and create pockets of tissue-destructive inflammation. Loss of CNS tissue in this process may include the neurotransmitter-receptor systems that control pain and regulate the cardiovascular, endocrine, and immunologic systems. With this loss of tissue, the afflicted persons develop constant pain and measurable evidence of cardiovascular, endocrine, and immunologic abnormalities. Hence, the systemic signs and symptoms indicate a specific syndrome of multiple bod-wide manifestations termed Intractable Pain Syndrome (IPS). There is, however, some promising news for afflicted with IPS. Clinicians have achieved good results in treating some patients by following a medication protocol designed to treat the underlying disease and to provide pain relief, while simultaneously correcting detected physiological abnormalities which has resulted, in some cases, in the reduction or reversal of the magnitude of the impairments that patients have developed. In other words, some patients with severe long-standing pain and significant impairments can, with a regimen tailored to their needs, achieve effective pain relief, and regain lost capabilities and function. To date this new understanding is not well known outside research circles. Therefore, the Tennant Foundation has initiated a Research and Education Project to bring information on this syndrome to patients, families, and medical practitioners. This paper presents the background, history, and basics of the Intractable Pain Syndrome as well as the rationale to treat it and initiate research and education on it. The overall goal of this new project is to bring recognition and treatment of the syndrome to pain care and to foster its prevention, since it is often a devastating, catastrophic medical condition.
Anabolic Therapy Precis
Some adhesive arachnoiditis (AA) patients who seek treatment for this condition will also have an Ehlers-Danlos/Hypermobility Syndrome. In order to provide comfort, maintain stability and retard connective tissue complications, we found it necessary to administer anabolic hormones.
Summary for The Way Forward
Adhesive arachnoiditis (AA) has become an urgent public health issue. It now affects millions and is increasing in number. Unlike other causes of back pain, AA is an inflammatory disease inside the spinal canal which, if untreated and unchecked, may cause unbearable pain, dysfunction of legs and internal organs, dementia, a generalized autoimmune disorder, and adrenal failure. All its complications can lead to a suffering, shortened lifespan. This report calls for immediate action to diagnose, treat, and prevent AA.
ARTICLES POSTED ON PAIN NEWS NETWORK – 2020
7 Ways to Treat Intractable Pain Syndrome – December 7-Ways-to-Treat-IPS
Intractable Pain Syndrome (IPS) requires a care program custom-made for each individual person, depending on their underlying painful condition and clinical severity. There are therapeutic, pharmacologic, dietary and physical measures you can take that specifically target the cause of IPS. Step One in finding relief and recovery is to target the cause of the pain, and not just take the “shotgun” approach with only symptomatic pain relievers. A multi-faceted approach is needed.
The 7-component treatment outlined here is to aid patients, families and medical practitioners in formulating an individualized IPS care program
1) Suppression of Inflammation
Underlying Cause: The injury or disease that originally produced the pain may continuously generate inflammation that requires suppression by a variety of means. Common measures to reduce inflammation include anti-inflammatory agents, electromagnetic therapies, local injections or topical agents.
Central Nerve Inflammation: IPS is caused by central nervous system (CNS) inflammation (neuroinflammation) that destroys or damages neurotransmitter systems. Only some treatment agents cross the blood brain barrier and suppress neuroinflammation. Some common agents: naltrexone, ketorolac, indomethacin, methylprednisolone, acetazolamide and dexamethasone.
2) Sleep Restoration
It is during sleep that the CNS regenerates the neurotransmitters you need for pain control. Adequate sleep is necessary for this to occur. Some common agents: Ambien, trazadone, temazepam (Restoril), amitriptyline, melatonin and Benadryl.
3) Control of Electric Currents
Some drugs now called “neuropathic” normalize electric current conduction, which is erratic due to nerve damage. Some common agents: gabapentin (Neurontin), pregabalin (Lyrica) and benzodiazepines (Klonopin and Valium).
4) Pain Control
The constant pain of IPS is composed of two types of pain: ascending and descending. IPS control requires agents for both types.
Ascending Pain: Some common agents: cannabinoids, opioids, ketamine, clonidine, kratom and naltrexone (if not already on opioids).
Descending Pain: Some common agents: amphetamine salts (Adderall), phentermine, modafinil, methylphenidate, mucuna.
5) Hormone and Neurotransmitter Supplementation
Groups of hormones now known as neurosteroids, and biochemical molecules known as neurotransmitters, are made in the brain and spinal cord. Their function includes suppressing inflammation, rebuilding damaged tissue and to provide pain control. Analgesic/pain-relieving drugs will not be effective if any neurosteroid or neurotransmitter is deficient. Neurotransmitter testing is now available.
Hormones: DHEA, pregnenolone, testosterone, progesterone.
Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.
6) Anabolic Measures (Tissue Building)
In IPS, tissue degeneration is constantly present due to inflammation. Some genetic connective tissue/collagen diseases such as Ehlers-Danlos Syndrome (EDS) have a built-in, constant tissue degenerating component (catabolic).
Tissue building (“anabolic”) measures are essential to counteract tissue degeneration, and several agents have been identified that do this: nandrolone, human chorionic gonadotropin (HCG), colostrum, deer antler velvet, and amino acid/collagen supplements are recommended.
7) Disease Specific Exercise
Spinal fluid circulates in and around the brain and spine. It washes out biologic waste products such as inflammation. It also brings nutrients to the inflamed and/or damaged nerves for healing.
Exercises that enhance spinal fluid flow include walking, rocking in a chair, and gently bouncing. Practice exercises and stretches that will prevent tissue shrinkage, paralysis and dysfunction of your extremities or other organs that are specific for your underlying condition.
All seven of these components should be considered for inclusion in an IPS care program.
Great Progress Being Made in Treating Arachnoiditis – October Progress-in-Treating-Arachnoiditis.pdf
About 5 years ago, most medical practitioners had either never heard of Adhesive Arachnoiditis (AA) or thought it was a spider bite. Today, almost all practitioners in the modern world have heard of AA. Many now understand it and some even treat it. A few are trying some innovative new approaches.
AA is a chronic inflammation that starts inside the spinal canal that can lead to severe suffering, neurologic impairments and a shortened lifespan. Once inflammation starts, it apparently never, or rarely, goes totally away.
Treatment and prevention in recent years have greatly reduced the occurrence of some serious neurologic impairments and autoimmune complications of AA. The most obvious decrease in new cases reviewed by the Tennant Foundation are those of upper and lower extremity paraparesis (partial paralysis) and total paralysis, which are rapidly disappearing.
Urinary and bladder impairments that require catheterization are also hardly seen. And the autoimmune manifestations of arthritis, thyroid deficiency and carpal tunnel are disappearing.
Why the improvement? Awareness, thanks to patients, social media and advocates who have educated the medical profession about AA. Fewer epidurals, early treatment and emergency measures have all helped. The development of protocols for prevention, emergency intervention and on-going treatment have been essential.
Major Remaining Problems
Persons with AA are still having difficulty, in some communities, finding medical practitioners who are comfortable and willing to treat AA. The major complication is the development of constant pain and the intractable pain syndrome.
The key to preventing AA and stopping its progression is early treatment. Our research has clearly shown that AA is almost always preceded by one of 3 intraspinal canal inflammatory conditions:
- Protruding, degenerated intravertebral discs.
- Cauda equina inflammation.
- Arachnoid inflammation (i.e. plain arachnoiditis) due to collagen disorders or needle injury.
Some intraspinal canal inflammatory disorders always precede AA. These disorders should be aggressively treated to prevent AA.
Select Corticosteroids Essential for AA
We believe all persons with typical AA symptoms and documentation of the disease on an MRI must take one of two corticosteroids (CS): methylprednisolone or dexamethasone for the spinal canal inflammation and pain of AA.
Currently there is no other medication agent that consistently and predictably suppresses intraspinal canal inflammation and reduces pain. Do not expect to halt progression or have much recovery if you do not consistently take a CS.
Dexamethasone and methylprednisolone are the preferred CS’s because they cross the blood brain barrier, enter spinal fluid and act on glial cells. Prednisone and hydrocortisone are not as consistently effective as dexamethasone and methylprednisolone, which should be taken in low doses.
- Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol) 2 to 4 mg on 2 to 5 days a week. Skip days between dosages. An alternative is a weekly or bi-monthly injection of methylprednisolone or dexamethasone. Injections are usually the answer to corticoid sensitivity or gastric upset.
- For flares, a 6-Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone, preferably mixed with a standard dose of injectable ketorolac.
The fear of corticosteroids comes from daily use of high doses, not from low, intermittent dosages. Some persons with severe asthma and rheumatoid arthritis must take a corticosteroid for years and don’t experience serious side effects.
Forest Tennant, MD, MPH, DrPH, is retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation, and is republished with permission. Correspondence should be sent to firstname.lastname@example.org.
Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.