Arachnoiditis is a chronic inflammatory process affecting the protective membranes around the brain, spinal cord and nerve roots. The lumbosacral area is most commonly involved. The condition is a reaction to invasive spinal procedures such as diagnostic myelography, epidural injections and spinal surgery, as well as spinal trauma and infections. It results in severe incapacitating pain and neurological disability. It tends to be progressive and may cause paralysis. Additional complications include syringomyelia, arachnoid cysts, hydrocephalus. Arachnoiditis has been reported as a cause of death but is not generally regarded as a terminal disease. There is as yet no known cure. The difficulty in achieving adequate pain relief is the greatest challenge in treatment.

Diagnosis of arachnoiditis is also difficult. Even sophisticated tests such as magnetic resonance imaging (MRI) may not clearly identify the pathology. A history of causative factors and the patient’s subjective reporting of a wide range of neurological symptoms, especially that of typical neuropathic pain, should alert physicians to the possibility of arachnoiditis, even when objective evidence of neurological deficits may be minimal. The reluctance of physicians to make the diagnosis for the above reasons, and in some cases because of a lack of awareness, knowledge and experience of the disease, contributes to the development of depression and low morale in many patients, an understandable reaction in anyone with a life sentence of chronic pain and physical disability.

The emotional response to chronic pain was discussed by Dr. D.M. Long at a Congress of Neurological Surgeons in 1977. JoAnn Le Maistre wrote of the effects of chronic physical illness in her book “Beyond Rage” in 1985. Both referred to the stages which individuals go through, based largely on the well known work of Kubler-Ross with reference to the grieving process. In arachnoiditis there is emotional trauma and grief over the loss of mobility, well being and future expectations, and the feeling that there is no meaning or purpose in such suffering.

An initial crisis situation precedes isolation (withdrawal), then a stage of anger occurs and this is followed by depression. Major depression tends not to feature in chronic illness (unless it has been a pre-existing condition), but intermittent recurrences of reactive depression can be triggered by specific situations. The subsequent stages are acceptance, adaptation or adjustment, reconstruction, and renewal. Not everyone goes through all of the stages, nor will they necessarily occur in the same order as described. Ultimately it can become possible to gain mastery over the situation and find some meaning in the experience. According to Long acceptance comes with the recognition that the pain has become part of the life experience and that the adverse effects will be permanent. It then becomes possible to rebuild the life, taking into account the associated physical difficulties. This corresponds with Le Maistre’s stages of reconstruction and renewal.

Over the following years there will be repetitions of some of the stages as the disabling disease results in further losses. These events take place against a background of varying levels of pain, muscle spasms and weakness, bladder and bowel problems, difficulties with concentration and memory, and various other symptoms, all of which are hallmarks of the disease. ‘Flare ups’ are episodes of exacerbation of the symptoms and profound fatigue, equivalent to a systemic illness. They may follow physical, mental or emotional stresses but there may be no obvious cause, and they may last for varying periods from days to several weeks. It is at such times, and especially when the pain becomes overwhelming and unresponsive to therapy, that feelings of hopelessness and despair arise. Wanting to live - but not like this – may lead to thoughts of suicide. For her Masters degree thesis Chris Hopkins interviewed persons with arachnoiditis about their every day experiences of living with the disease. Some admitted that they had at times entertained thoughts of suicide but none had made any attempt to end their lives. However, there have been reports of suicidal attempts, one is recorded in a case history on Dr. Burton’s web site.

Life is not fair – but it is universally unfair. Everyone at some stage will experience undeserved misfortune, affliction, pain, suffering, loss. Mary Craig wrote:- “The value of suffering does not lie in the pain of it, which is morally neutral – but in what the sufferer makes of it. Two persons can go through the same painful experience, one be destroyed by it, the other achieve an extra dimension. The real tragedy of suffering is the wasted opportunity.” How one reacts to circumstances is a matter of choice. The situation can be allowed to take control, making one bitter, unhappy and friendless. Or one can choose to confront it with courage, gain control over it and use it creatively for some meaningful purpose. At the core of one’s being the same person still exists and the changed circumstances can be used to create a new edition of the self – if the will to do it is there. But the will is powerless without hope. While there may be little control over the medical condition, which in the case of arachnoiditis is tantamount to being trapped within a prison of pain, everyone has what Viktor Frankl has described as the greatest of human freedoms – the choice of attitude in any given set of circumstances. Thus one can choose to keep hope alive and maintain a positive attitude.

In his book “The Gift of Pain. Why we hurt and what we can do about it” Dr Paul Brand draws attention to the mysterious and amazing power of the human mind as it interprets and responds to pain.

It is this power that enable one to learn to live a new life in spite of the disease rather than an unhappy life because of it. The learning involves consciously paying attention to personal appearance, maintaining a good posture as far as is possible, remembering to smile, concentrating on other people’s interests and limiting comments about one’s own physical disabilities. It is important for one’s well being to reach outside of and beyond the pain, especially at times when it is not too bad, so that a positive attitude becomes a way of life. Reinforcement of positive thinking is possible with the aid of music, relaxation techniques, a sense of humour, reading about others who have triumphed over adversity, striving for achievable short term goals. When episodes of discouragement or despair are experienced it is important to draw on the support and guidance available from family, friends, health professionals and fellow sufferers. And in time one discovers the truth of Frankl’s statement that “He who has a why to live can bear with almost any how.”

“In life it is healthy to reach for joy and to build for fulfilment. But when life brings you sorrow, that also has a value which can be utilized in your quest for wholeness.” (V. Heisler, physically disabled from the age of 8 years as a result of severe poliomyelitis.)

REFERENCES AND RECOMMENDED READING

Burton, C. Lumbosacral Adhesive Arachnoiditis. Introduction.
http://www.burtonreport.com

Burton, C. An Unsolicited E-mail.
http://www.burtonreport.com

Kevin Rahn & Richard T. Holt. Arachnoiditis.
http://www.spine-surgery.com/Articles/arachnoiditis.html

Erickson T.C. & Van Baaren H.J. Late Meningeal Reaction to Ethyl-Iodophenylundecylate Used in Myelography.1953JAMA. 153:7. 636-9.

Long D.M. The Psychiatric Assessment of the Patient with Pain.

In Clinical Neurosurgery. 1978 Vol 26:717. Baltimore. The Williams & Wilkins Co.

Hopkins, Chris. The Presenting Symptoms Associated with Arachnoiditis and the Experience of Living with them in Every Day Life. 1998 Thesis for Masters degree, Massey University, New Zealand.

Le Maistre, JoAnn. Beyond Rage. 1985. Alpine Guild. USA.

Frankl, Viktor E. Man’s Search for Meaning.1964.Hodder & Stoughton. London.

Heisler, V. A Handicapped Child in the Family. A Guide for Parents. 1972. Grune & Stratton. NY.

Brand, Paul & Philip Yancy. The Gift of Pain – Why we hurt and what we can do about it. 1993. Zondervan Publishing House. Grand Rapids, Michigan.