Spiders In Your Spine
"Oh, what a tangled web we weave, when first we practice to deceive" (Sir Walter Scott) So many times when I raise the subject of Arachnoiditis, the initial response is "Oh, is that about spiders?" In fact, it can get quite tiresome after a while! Still, in the spirit of "If you canít beat Ďem, join Ďem": letís address this first! Arachnoiditis is a chronic incurable spinal condition which causes severe pain and various other problems. It gets its name from the description of what it is: inflammation of the arachnoid layer of the meninges, which are protective layers around the spinal cord and brain.
You will no doubt be familiar with meningitis: well arachnoiditis is a sort of chronic meningitis of the middle layer. Arachnoid because the layer resembles a spiderís web in appearance. Basically this web becomes tangled when it is chronically inflamed. Scar tissue binds the nerve roots together and this causes pain and numbness/tingling in the parts of the body supplied by these roots(which are effectively the channels of information from the spinal cord to various parts of the body). Of course, this information is both incoming (sensations) and outgoing (movement information to muscles) so another problem is weakness.
In fact arachnoiditis causes a wide variety of symptoms. The pain is the predominant feature. It is persistent, always there. Generally, sufferers describe it as an intense burning, and they often have intermittent electric shock sensations, as well as muscle spasms which can be very painful. Many people complain especially about burning feet or a feeling of walking on broken glass. Approximately two thirds of arachniacs experience problems with bladder control, sexual dysfunction and/or bowel control. This is obviously highly distressing.
Another common problem is excessive sweating and intolerance of heat. In this respect (and others) arachnoiditis resembles Multiple Sclerosis. This devastating condition is incurable. The pain it causes is severe and many sufferers take opiate drugs like morphine on a daily basis to try to gain some relief. Many need to take a whole cocktail of drugs to combat the pain and symptoms like muscle spasms.
causes of this debilitating condition are most commonly iatrogenic,
which means due to medical intervention. This of course means that
doctors are not keen on discussing it and often they are reluctant to
diagnose it. A leading expert has suggested that arachnoiditis accounts
for about 11% of what is termed "Failed Back Surgery Syndrome"
: that is to say, persistent back or leg pain following spinal surgery.
As this Syndrome affects an average of 25% of all people who undergo
back surgery, then arachnoiditis from this cause alone will have
affected about a million people in the United States in the last 50
years, and probably double that worldwide.
Surgery is by no means the only cause of arachnoiditis. In fact, the most common cause nowadays is the use of epidural steroid injections, which ironically are used to treat Failed Back Surgery Syndrome. The preservatives in these preparations are toxic to nerves. No-one really knows how many people are affected by arachnoiditis due to this treatment. About 30,000 injections like this are performed each year in the UK.
of the investigations of back pain which was commonly used until MRI
scans became available, was a myelogram, where contrast dye was injected
into the spinal fluid to help image any compromise to the spinal cord
(say from a herniated disc).Unfortunately, these agents can cause
arachnoiditis. The oil-based dyes such as Myodil were particularly toxic
and remain in the body permanently. This was withdrawn from use in 1987.
The manufacturers, Glaxo, were sued by 425 people who suffered adverse
effects, and they made an out of court settlement of £7 million (of
which £5 million went in legal fees and costs) in 1995.
Water-soluble dyes such as Conray and Dimer-X were also very toxic and are no longer used. Even the newer dyes such as Omnipaque can cause problems. Thankfully nowadays, MRI scans have largely replaced the myelogram. However, as there may be a latent period between exposure and onset of symptoms, new cases of arachnoiditis due to myelogram dyes continue to arise( but often are failed to be recognized by the medical profession.)
Epidural anesthetics such as those used in childbirth can also cause arachnoiditis, though it is thought to be a rare adverse event. Until proper long-term follow-up studies are done, we have no way of knowing what the true incidence is. There are a number of other causes such as meningitis and subarachnoid hemorrhage (a type of stroke) which are not iatrogenic (except for cases of chemical meningitis following myelogram, for example).
One of the hardest things for arachnoiditis sufferers is the way in which doctors, instead of being allies, are either neutral (dismissive) or enemies(downright obstructive) Sadly, it is common for patients to be told the pain is "all in their head" and for them to be stonewalled in their efforts to find out information about procedures they have undergone. This "cover-up" mentality is scandalous. (hence the subtitle of this article). A further problem is that many doctors know very little about arachnoiditis.
Chronic illness causes such a variety of losses: these include loss of job (most are unable to work) hence loss of role and financial difficulties. The illness puts tremendous strain on relationships. Often, sufferers feel isolated, and it is hard for family and friends to really understand the pain, which is of course, an invisible thread that runs through daily life.
of independence, especially if mobility is impaired can be very
dispiriting. Some sufferers become wheelchair bound, and a few even
Depression is a common, understandable reaction to all these problems and above all to the unrelenting pain. This can reach the extent of suicidal feelings and maybe even suicide itself. After all, one doctor called it "the pain of cancer without the release of death".
One of the ways in which sufferers can keep going is through joining a support group. Here in the UK there is the Arachnoiditis Trust, a registered charity, set up and run by sufferers dedicated to supporting their members and campaigning to raise public and medical awareness of the condition. As a Patron, I am also a member of the Medical Working Party and we have been researching arachnoiditis for about 2 years. (We are currently running a global survey about arachnoiditis and how it affects people). The hope is that we can encourage the initiation of clinical research, which up to now has been sparse.
For those who have a computer and are online, there is the support group COFWA (Circle of Friends with Arachnoiditis): the majority of members are in the State, but there are members from all over the world. "Down Under" there is a group in Australia (Chemically Induced Adhesive Arachnoiditis Sufferers of Australia CIAASA) and one in New Zealand (Arachnoiditis Sufferers Action and Monitoring Society: ASAMS). There are also other smaller groups.