There is no area of medicine today where greater, or more cruel suffering has been created in greater populations of patients throughout the globe than those directly related to adhesive arachnoiditis of which the most common form is in the lumbo-sacral area. Whether due to apathy, disinterest, indifference or self-protective behavior by the medical, scientific and governmental communities lumbo-sacral adhesive arachnoiditis (LSAA) and it’s potential liabilities has continued to remain essentially unknown, unreported, and unrecognized among both physicians and patients.
An important reason for this state of affairs has been the pattern of organized deception and obfuscation in regard to the safety and efficacy of oil myelographic substances such as Pantopaque® and Myodil® perpetrated by some of the originators and manufacturers of iophendylate for over half a century. This “bodyguard of misrepresentation” and “damage control” by company lawyers has been effective in insuring that governmental agencies, physicians and patients have not been allowed to fully appreciate the risks inherent in introducing highly toxic substances into the sub-arachnoid space. By not focusing, or adequately propagating, what is known scientifically regarding LSAA it has continued to be a serious world public health challenge and something which is continuously being perpetrated on unsuspecting patients by their uninformed physicians.
Even today the world community has still not yet come to grips with this cruel phenomenon nor has it yet demonstrated an appropriate social conscience regarding this disease entity. LSAA continues to be a trail of tragedy for many unfortunate patients and new cases appear on a regular basis because of our failure to learn from history. This regrettable situation has tended to cast those health care professionals who have tried to sound this alarm in a role similar to that of Dr. Peter Stockmann, the hero of Hendrik Ibsen’s 1882 play “An Enemy of the People.”
What determines whether or not the pathologic entity LSAA which is actually a “chemical meningitis”, something first reported by neurosurgeon Van Wagenen in 1942, produces significant or disabling pain in addition to neurologic impairment has a lot to do with how active or passive the meningeal reaction is. Because of the human nervous system’s remarkable abilities to recover from insult if given the opportunity many patients with LSAA are asymptomatic but exist in a precarious balance where things could easily change for the worse if a patient is subject to additional insult.
Remarkably there are still those who actually insist that the pathologic entity LSAA “does not even exist .” Fortunately these individuals belong to the ever-diminishing circle of those who also believe that:
The Holocaust never happened. Americans never really landed on the moon (it was staged). September 11, 2001 was really an Israeli plot.
The saga of adhesive arachnoiditis is not just something of historical interest. In no area of medicine has failure of “informed consent” been more evident than in the continuing saga of this disease process. The discussion of this rather incredible and continuing misadventure, which focuses on the neurotoxicity of foreign body substances (“chemical meningitis”) being introduced into the subarachnoid space for the purposes of myelography and epidural steroid administration, begins with a review of these subjects:
Myelography, is an invasive diagnostic test in which a radio-opaque substance is placed in the subarachnoid space so that the space can be visualized by x-ray. The first contrast material used for this purpose was air. Air myelography developed from innovations in air ventriculography and air encephalography started in 1918, by Johns Hopkins neurosurgeon Walter Dandy. Because air was difficult to visualize on x-ray a search for alternatives began. In 1932 thorium dioxide (Thorotrast®) was first introduced. It appeared to be ideal for the purpose of myelography (and other diagnostic studies) and were it not for the fact that it was radioactive it would have been. Thorium dioxide turned out to be a highly toxic radioactive substance. It was only 20-30 years after its introduction that the medical profession began to suspect that the sudden and unusually high incidence of malignancies involving the brain and spinal cord (as well as adhesive arachnoiditis) might be related to thorium dioxide’s radioactivity. At this point this myelographic agent “fell into disuse.” Modern radio-opaque materials are not totally benign but use is predicated on informed “risk vs. benefit” considerations.
The “epidural” space is separated from the subarachnoid space only by the thin dura mater membrane and its associated filamentous pia mater. Epidural steroid administration is an empiric therapeutic modality commonly performed for the treatment of low back disorders. If the steroid is inadvertently injected into the subarachnoid space rather than the epidural space serious disability and incapacitation can result. Although all foreign body substances introduced into the subarachnoid space are “irritating” others can be highly neurotoxic. The most significant example of such neurotoxic agents are those containing ethylene glycols to allow for slow release (i.e. Depo-Medrol® , Depo-Medrone®, Aristocort® and Methylprednisolone Suspension®). When introduced into the subarachnoid space these materials can be highly neurotoxic and productive of a potentially disabling condition referred to as adhesive arachnoiditis. Since none of these steroids is approved, by their manufacturers, for epidural injection, and that they are clearly know to be toxic if misinjected, it is interesting to note that they still appear to be used by many physicians now performing epidural steroid injections.
A prudent individual would assume that the medical leaders in performing, teaching, and publishing on epidural steroids would be acutely cognizant of the most potentially serious patient complication of “epidural” steroid administration. The facts suggest otherwise. A prominent medical publisher, publishing 16 spine-related patient manuals including “Lumbar Epidural Injection” and “Cervical Epidural Injection” has, under the section on “risks and complications“, made no mention of adhesive arachnoiditis, the most serious potential complication of epidural steroid administration. This is despite the fact that new cases of incapacitating adhesive arachnoiditis directly related to inadvertent subarachnoid administration of neurotoxic steroids are being diagnosed by spine specialists on a continuing basis.
Are there alternatives to potentially neurotoxic formulations of methyl- prednisolone for epidural administration? Indeed there are. Why are they not used? The best answer is colossal ignorance, indifference, deception, or worse. Methyl prednisolone “suspensions” have neither “fallen into disuse” nor have they been officially identified as being a serious potential risk to the public health in any country at this time. What does this revelation mean in regard to informed consent? Might viewing Burton Report® allow patients to ask the right questions as to just which drugs will be injected and techniques used prior to therapy? Will physicians, because of these questions from informed patients, begin to modify their practice? We certainly hope so. It is sad to observe that once again, the public may be forced to call upon the good offices of the legal profession to help in promoting awareness of this clear and present danger because of failure by the health care establishment and elected officials to accept responsibility and become involved.
The use of intrathecally placed (within the subarachnoid space) catheters for the purpose of delivering drugs (i.e. morphine for pain relief, baclofin for control of spasm) is not without risk of producing local adhesive arachnoiditis. These catheters can produce focal adhesive arachnoiditis, cysts and other inflammatory problems. That such risks exist should be explained to patients as part of the preoperative informed consent process. It should also be an important part of the risk versus benefit consideration for even considering such therapy in patients with normal life expectancies.
Clinically significant lumbo-sacral adhesive arachnoiditis is a particularly cruel disease because of the nature of the pain and neurologic impairment syndromes associated with it. Yet, its pathophysiology is well understood and is no longer a mystery. Yet, for those desiring an objective determination of the existence or absence of adhesive arachnoiditis non-invasive high-resolution MRI scans have now allowed definitive determination of this frightening pathologic entity.
The nature of the pain associated with adhesive arachnoiditis is uniquely incapacitating and dolorologists have created the term “regional complex pain disorder” (RCPD) to describe it. Apologists for those who have created adhesive arachnoiditis and RCPD in patients have pointed out that only 1-5% of those with the condition actually have the full-blown clinical symptoms (which can include progressive neurologic deficit and even death). The reason for this is interesting and appears to relate to the remarkable ability of the nervous system, with its great reserve and redundancy, to cope with severe insult and injury (if applied in a gradual fashion). It appears that despite being enmeshed in solid collagenous scar tissue and being deprived of the nurturing of cerebrospinal fluid and its normal vascular supply nerve cells can often achieve a tenuous equilibrium. This delicate balance can, however, be easily upset by additional insult or injury (i.e. spinal surgery or a motor vehicle accident releasing blood into the subarachnoid space).
There are a number of other neurologic parallels to the phenomenon of nervous system acclimization. One such is the “post-polio syndrome” where individuals afflicted with poliomyelitis early in life may make complete functional recoveries but as they age they experience progressive weakness. In this circumstance polio has destroyed the neuronal reserve and normal function belies the fact that there is no reserve. As the normal process of aging occurs and neurons die by attrition the lack of reserve is evidenced by the inability of the few remaining viable neurons to handle the challenge of normal function. The human body functions well with only one kidney, one lung etc. No one would dare to suggest that the loss of these organs was not inconsequential to the welfare of the individual. In the case of adhesive arachnoiditis the story has, unfortunately to date, been different.
Expressions of plight by individuals suffering with adhesive arachnoiditis are common. The many individuals legitimately suffering from adhesive arachnoiditis often are undiagnosed only because of healthcare establishment inadequacies. The legitimate disability of these unfortunates is then looked upon with distain by the medical and legislative communities who, because of their own diagnostic limitations, tend too often to consider these patients to be malingerers (or worse). The sad result of this are legions of patients seeking only the dignity of a definitive diagnosis from professional groups and organizations whose skill at evasion and cover-up have unfortunately exceeded their other talents. The disrespectful manner in which many countries have treated these unfortunates, whose only crime was not knowing the right questions to ask before a “minimally invasive” myelogram or epidural steroid injection was performed, has been sad to see.
Sadly, the rare examples where recourse has occurred typically has represented the compassion of the legal profession again serving as a societal “safety net.” Even so legal attempts at legitimate recourse have been hampered by unrealistic “statue of limitation” requirements. Unfortunately, tort litigation reform has focused only on limiting the liability of transgressors so that their exposure becomes only a “business expense” and not something which will actually change their behavior.
The Editor, as a health care professional who has been concerned with the subject of neurotoxicity and patients suffering from adhesive arachnoiditis for over a half of a century has, as his only excuse for becoming involved in an issue emulating Hendrik Ibsen’s “Enemy of the People”, is not being “smart enough to know when to quit.”