RESEARCH
ARTICLE

This thesis was added
14 July 2002

The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life

A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University

by Christine Hopkins - 1998

Chapter Five: Literature Search - the Symptoms Associated with Arachnoiditis.

Introduction

The literature search accessed as wide a range as possible of the writings on arachnoiditis available in New Zealand. Reference lists were used to access further literature. ASAMS permitted the researcher to use the contents of their library, thus providing access to many articles not available through interloan sources within New Zealand. These articles had been acquired through contact with American and British support groups. All the available information was reviewed to explore current understandings on the recognised symptoms of arachnoiditis.

Findings

Nursing literature on arachnoiditis is sparse. The pain literature by prominent nurse pain specialists, for example, Carroll and Bowsher (1993), Jacox (1977, 1994), McCaffery and Beebe (1989), and Watt-Watson and Donovan (1992), does not mention arachnoiditis. An initial search on Cinahl in 1996 using the keyword ‘arachnoiditis’ found only two journal articles. Brownrigg’s (1992) otherwise informative article had only the briefest mention of the qualities of the symptoms. The other nursing article (Sadler, 1993) graphically described the pain and the difficulties experienced by a nurse after a myelogram was performed, but made no mention as to what these symptoms meant in terms of pain classification and treatment options. When visiting that keyword again a year later, Sadler’s entry had been deleted and replaced by a medical journal article concerning a rare complication of arachnoiditis (Toribatake et al., 1995). In January 1998, Cinahl listed eight articles, six of which were not from nursing journals. Of the two nursing journal entries, one focuses primarily on syringomyelia. To gain a fuller understanding of the symptoms considered to be associated with arachnoiditis, it was necessary to turn to the medical literature.

International interest

Articles on arachnoiditis were found mainly in specialist medical literature, in particular radiology, neurology, anaesthesiology and orthopaedic sources, and were available in journals from countries as diverse as Russia, Spain, Malaysia, South Africa, South America, New Zealand, Scandinavia and Germany. This diversity of countries of origin illustrates the worldwide nature of the problem. Not all of these articles were available in English translation but the listings on Medline with English abstracts gave notice of the foci of interest. For example, considerable research had been done in Russia on sinus and optical complications of arachnoiditis, something rarely mentioned in Western literature, but of concern to some of those who contacted WDRC in 1995-1996.

Historical perspectives on the symptoms associated with arachnoiditis and concomitant diseases and conditions.

Symptoms have not commonly been expanded upon in the medical literature. There has been little agreement over just which symptoms can be attributed solely to arachnoiditis (Guyer et al., 1989). Abnormal morphology is not always associated with symptoms in individuals with degenerative spinal conditions (Lander, 1996), and some people with radiological changes indicating adhesive arachnoiditis may have no symptoms at all (Johnson et al., 1991). It is recognised that spinal cord damage commonly accompanies arachnoiditis (Donaldson & Gibson, 1982). People with symptomatic arachnoiditis often have a history of spinal injury, spinal surgery or surgeries, and of various invasive spinal diagnostic tests, all of which are now recognised as associated risk factors for arachnoiditis but which may also have a number of symptoms of their own. It is, therefore, perhaps not surprising that there has been a lack of agreement as to which symptoms can be attributed specifically to a particular anatomical abnormality, such as the adhesive scarring of arachnoiditis.

When considered in chronological fashion, examples of earlier research (Davies, 1956; Smith & Ross, 1959; Mason & Raaf, 1962; Howland & Curry, 1966) made no mention of symptoms at all, focusing on aetiology, or on pathology in animal and human studies.

Even into the 1970’s and 1980’s the focus remained on aetiology and diagnosis, making no mention of symptoms as experienced by the patient, and looking particularly at the role of myelography and contrast agents in the genesis of arachnoiditis (Mayher, Daniel & Allen, 1971; Peterson, 1976; Burton, 1978, 1985, 1991; Gelmers, 1979; Junck & Marshall, 1983; Killebrew, Whaley, Hayward & Scatliff, 1983; Elliot, Wild & Snow, 1984) or at the effectiveness and side effects of radiological procedures for diagnosis (Jorgensen, et al., 1975; Carella, Federico, Di Cuonzo, Vinjau & Lamberti, 1982).

Jorgenson, et al. (1975) noted the scarcity of reports dealing with the clinical symptoms and the lack of a distinctive complex of signs and symptoms related to either the radiological or the surgical picture of arachnoiditis and concluded that the symptoms in those with radiologically diagnosed arachnoiditis were indistinguishable from those of other chronic diseases of the lower spinal canal and were probably related to previous disc herniation and/or surgery. Burton’s (1978) widely cited landmark paper on arachnoiditis dealt mostly with a description of the pathological processes of unequivocal lumbar arachnoiditis, and simply noted that the presenting symptoms were constant low back pain and/or leg pain markedly worsened by activity. Of the earlier studies available the symptoms, when mentioned, were most consistently given as low back pain and leg pain in one or both legs, sometimes mentioned as radiating down one or both legs in a mono- or polyradicular fashion.

Recent studies confirm the view that symptoms vary. This may be according to the level and/or type of arachnoiditis, which can be focal (confined to one level) or diffuse (Fitt & Stevens, 1995). This study confirmed earlier findings that there was no correlation between the severity of arachnoiditis shown on MRI and the severity of the clinical symptoms and associated disabilities. However, in noting that similar clinical features were present in a number of patients who did not have arachnoiditis, they did not state what those similarities were.

By the 1990’s, when people who had arachnoiditis had begun legal action against Glaxo, the makers of Myodil and, more recently, Upjohn as the makers of Depo-Medrol, literature reviews and retrospective studies had been undertaken (Hughes & Isherwood, 1992; Rowland-Hill, Hunter, Moseley & Kendall, 1992; Wilkinson, 1992; Nelson, 1993). While recognising that there was a large body of evidence that implicated oil based dyes, small sample sizes, incomplete records, lack of access to the cohort for adequate study and the role of pre-existing pathologies were seen as problems in reaching accurate conclusions as to the role Myodil played in the development of any person’s symptoms (Rowland-Hill, et al., 1992). These authors did not delineate those symptoms.

However, during the late 1980’s and the 1990’s there also emerged a new focus and attitude in some arachnoiditis literature, as physicians began to report more of the effect of the symptoms on both the person and society, using words such as “a most distressing condition for the patient” (Dolan, 1993). Arachnoiditis was described as the “greatest enigma” in spinal surgery with the “ruination of productive lives at great cost to society” (Guyer et al., 1989) and as a “scrapheap diagnosis for failed back surgery” (Shipton, 1989). Failed back surgery is the term used when low back surgery fails to alleviate pain or reverse neurological deficits (Burton, 1985). Only 11% of failed backs are due to arachnoiditis (Burton, 1991), with many other failures being linked to poor or inadequate evaluation and standardised protocols leading to ill-advised surgical intervention (Burton, 1985; Calliet, 1988; Shipton, 1989). Burton (1991) described the study of foreign-body-induced lumbo-sacral arachnoiditis over the last fifty years as “fascinating but also frightening” and the condition as “constant and unrelenting” and “particularly disabling.” The associated back pain is described as “agonising” (Dolan, 1993). The disease was seen as “especially cruel” (Burton, 1994), because the associated, constant, incapacitating pain so resistant to therapy occurred mostly after interventions for spinal problems at an average age of 40, thus leaving about half the person’s life in “functional disarray.” The “bizarre” symptoms were commonly dismissed as neurotic or functional or confused with sciatic and rheumatic conditions (Bourne, 1990; Burton, 1991).

It is the literature from the late 1980’s onward that gives recognition to a clearer clinical syndrome, with characteristic complaints including burning pain in the back and lower limb and sensory disturbance (usually numbness) in the lower limbs (Guyer, 1989; Johnson et al., 1991; Long, 1992; Brammah & Jayson, 1994). Although these descriptions still tended to be very brief., the wide variation in symptoms among individuals with confirmed arachnoiditis was recognised (Guyer et al., 1989; Bourne, 1990; Smith & Blaser, 1991; Long, 1992; Carrol & Wiesel, 1992; Burton,1997), as was the sometimes progressive neurological impairment and the disability related to the constant and incapacitating pain.

Bourne (1990) highlighted a grouping of certain symptoms that could serve as clues to indicate the presence of adhesive arachnoiditis. These symptoms, as described by patients, might include a burning sensation in the sacral area, gripping or clawing pains in the calves and ankles, severe pain down the back of one or both legs that did not match a sciatic distribution, a tingling pain in the insteps, and a burning at the inner aspects of the knees. Recognising these symptoms and their exact location was seen as important, as no other disease is linked to constant burning pain at the insteps, the inner aspects of the knees and in the lumbo-sacroiliac area (ibid). Long (1992), who between 1967 and 1992 saw in excess of 300 patients with diagnosed arachnoiditis, found no consistent clinical syndrome. 94% had back pain, aggravated by activity in virtually all. 81% had leg pain. In 40% it was radicular and in 41% it was diffuse and apparently nonradicular. 14% reported major bowel and bladder dysfunction. 94% had chronic muscle contractions and 91% had impaired range of motion of the trunk, with backward and forward bending producing pain in all. All his cases reported sensory abnormalities but this could only be demonstrated in 81%. 74% had demonstrable motor loss. Long (ibid) also enquired into functional loss and impact on daily living. 92% found a claudication syndrome limited their walking. 52% could no longer work, although their complicated back histories did not allow direct attribution of this inability purely to arachnoiditis. Only 8% did not have problems with sexual function. However, this study did not describe what the symptoms were like.

The most expansive numbers of symptoms were not found in published studies, but in news sheets or fact sheets for those with arachnoiditis. The symptoms given included constant back and leg pain; paresthesias, including burning or stinging pain, numbness, tingling in the back and one or more limbs, a tightness or banded feeling around the calves; spasms in the back, legs or feet; headaches; bladder, bowel and /or sexual dysfunction; burning and aching in the feet with a feeling of walking on rocks or broken glass; visual impairment or disturbances and, in rare cases, blindness. Spastic jumping or jerking of the limbs occurred, as well as seizures and paraplegia. (Arachnoiditis - questions, 1994; Whanganui Disablity Resource Centre, 1995; Arachnoiditis: What is, 1996; Arachnoiditis Trust Leaflet). No attempts were made to explain the reasons for the presence of any of these symptoms, a lack also apparent in the majority of the journal literature.

Burton (1994) puts forward the view that, from the 1970’s onward, a real knowledge and educational void has existed, which has failed to recognise that arachnoiditis represents a serious and astonishingly little appreciated world-wide clinical problem. It is not surprising, therefore, that the Back Pain of America Newsletter (Arachnoiditis: What is, 1996) can claim that physicians and nurses do not know all the problems that arachnoiditis causes. The variability of the symptoms from person to person, the episodic nature of some, and the permanency of other, symptoms confuse the picture presented. Thoracic and cervical arachnoiditis with upper neurone involvement may be associated with a much wider and more serious range of symptoms about which very little is mentioned in the literature at all. Symptom development needs to be considered in the context of past history relating to spinal problems (Tasker, De Carvalho & Dostrovsky, 1991).

Pain emerged in the literature search as the dominant symptom and the one of most frequent concern. The presence of pain is likely to be idiosyncratic, not affecting all those with known cord lesions. Pain onset, as with the onset of other symptoms, is delayed in most cases and needs to be considered in the context of past history relating to spinal problems (Tasker, et al., 1991). The most important factor relating to the pain is consideration of the types of pain involved which, when associated with lumbar spine disease, often involves several different types of pain of neurogenic, central, and nociceptive origin (Meyerson, 1990).

Pain arising from stimulation of nerve receptors is known as nociceptive pain. Pain arising from within the nerves independent of nociceptors is known as neurogenic or neuropathic pain. The spinal pain associated with arachnoiditis is pain arising from lesions within the central nervous system and is known as central pain. ‘Central pain’ has replaced ‘neuropathy’ as the preferred term for pain arising in the brain and spinal cord (Lindblom, 1991), and is defined as pain due to lesions or disease of the central nervous system that activate central pain mechanisms (Casey, 1991). However, much variation still occurs in the usage of the various terms.

The reviewed literature rarely distinguished between nociceptive, neurogenic/neuropathic and/or central pain, although central pain is the aspect of pain management that causes the most difficulty for the person who has it and the practitioner caring for them. Bourne (1990) noted the constant burning nature of the pain as suggestive of an element of causalgia and that its poor localisation and diffuse nature linked it to central paleospinothalamic pain rather than to nociceptive pain.

However, the lack of reference to classification of the pain types involved in arachnoiditis is perhaps unsurprising in light of a report by Casey (1991), who undertook an extensive literature search on electronic sources, in major textbooks and in review articles and found very scant data on the incidence and prevalence of pain in various central nervous system diseases, with some reports failing to differentiate between various types of pain, and others using a variety of classificatory systems. Casey (ibid) concluded that pain was just not considered important enough to incorporate into study protocols in order to obtain data on the incidence and prevalence of pain and its characteristics. This is reflected in the failure of arachnoiditis literature to identify the pain as central pain and link it to spinal cord lesions.

Pain associated with arachnoiditis may also include a mixture of deafferentation, radicular, and musculoskeletal pain and the characteristics of the pain may change dramatically with time. Pain characteristics noted in the literature include steady, spontaneous, pain, intermittent, lancinating pain and evoked pain. Most of the steady pain is likely to be burning in quality, with some associated numbness and tingling. The pain may be diffusely referred to the parts of the body where sensation is affected by the area of the cord lesion, but there is also often a localised component to the pain. Concurrent musculoskeletal pain may be due to over use syndromes as people overcompensate for imbalance and mobility problems (Davidoff & Roth, 1991).