The Aword

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Arachnoiditis* is a chronic, insidious inflammatory condition, involving the arachnoid (middle) layer of the meninges, the membranes surrounding the spinal cord. It typically causes debilitating, persistent back and limb pain and a range of other problems.

This condition is substantially under-diagnosed and adverse drug reactions under-reported, so that the true incidence has yet to be established.

* Note that in the context of this article, arachnoiditis refers to clinically-significant adhesive arachnoiditis.

There are varying degrees of the condition arachnoiditis, the milder forms of which tend not to cause significant problems, whereas adhesive arachnoiditis is at the most severe end of the spectrum and is responsible for the condition outlined below.
I conducted a survey of 317 arachnoiditis sufferers globally in 1999 :the ten commonest symptoms were:

  1. Pain (100%): often widespread, but particularly in the back and legs
  2. Numbness/tingling (86%)
  3. Sleep disturbance (84%): most patients have great trouble getting more than a couple of hours' sleep a night.
  4. Weakness (82%):  some arachnoiditis patients need to use a wheelchair.
  5. Muscle cramps/twitches/spasms (81%): these can be extremely painful
  6. Stiffness (79%)
  7. Fatigue (76%)
  8. Joint pains (72%)
  9. Balance difficulties (70%)
  10. Loss of mobility (68%)

Other common symptoms seen in the typical case:

1. Bladder/bowel/sexual dysfunction(68%)
2. Increased sweating (63%);
3. Difficulty thinking clearly/Depression (63% /62%);
4. Heat intolerance(58%);
5. Dry eyes/mouth(58%) and
6. Weight gain (50%).

The pain tends to be intractable and resistant to treatment, being predominantly neurogenic(nerve related in origin), which is well recognised as an especially unpleasant pain which is difficult to treat.

One doctor has likened the pain to that experienced in cancer, but without the relief of death.

Indeed, some sufferers become suicidal due to the unrelenting pain and the neurological deficits they experience. (I have just heard of a case of a man in America who shot himself this week, being unable to carry on with the unrelenting pain).

There is a range of systemic symptoms which constitute a debilitating condition that severely impairs the sufferers' quality of life. Arachnoiditis is incurable and may be progressive in some cases.

The majority of sufferers need to use a variety of medication in an attempt to reduce the pain.

These include: narcotic drugs such as morphine ( a few patients need an internal morphine pump) in conjunction with adjuvant medication: usually a cocktail of drugs is necessary.

IN the 1999 survey only 3% of the respondents were on no medication and this was due to not being able to tolerate the strong medication due to side-effects or adverse reactions.

Naturally, high doses of these drugs may cause significant adverse effects such as sedation, cognitive impairment, nausea and vomiting, fluid retention etc.

Despite these drugs, all too often, patients still have to put up with constant pain every day of their lives. Rarely is the pain banished, usually it becomes an unwelcome part of everyday life.

It is important to note that sufferers experience a wide range of symptoms, the combination of which is extremely debilitating.

A significant number of arachnoiditis patients are substantially disabled due to their condition.

Myodil-induced arachnoiditis falls within the category of chemically-induced arachnoiditis; as such, it entails a syndrome : that is to say, symptoms relating to various body systems,  and is not simply a spinal condition.

There is in all probability, an autoimmune component, in which the body starts attacking itself, which arises as a reaction to the chemical insult form Myodil.

Some arachnoiditis patients develop conditions such as lupus and a few are diagnosed with MS in addition to arachnoiditis.

One must also remember that aside from the symptoms of arachnoiditis, often the patient also has to deal with symptoms arising from the spinal problem for which they underwent a myelogram in the first place: many have continuing spinal problems such as a recurrence of a slipped disc, osteoporosis (made even more likely due to the loss of mobility), spondylosis, osteoarthritis etc.

This always complicates the picture.