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SPIDERS IN YOUR SPINE??
"Oh, what a tangled web we weave, when first we practise
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 can't beat 'em, join 'em": let's 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 spider's 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.
The 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
commonest 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.
One 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 anaesthetics 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 haemorrhage (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.
Loss of independence, especially if mobility is impaired can be very dispiriting.
Some sufferers become wheelchair bound, and a few even become bed-bound.
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.
This lady lives in America; she is 43 and is married with two daughters. I am copying her story exactly as told me via e-mail. It is pretty much a typical story and note that she is obviously a strong person (something which doctors tend not to realize!):
"I herniated a disc (L4/5) 20 years ago while working as an RN(nurse). I had very little back discomfort at the time, my pain (burning) was primarily running down the back of my right leg. My doctor at this time, head of Orthopedics, implied that I wanted time off work when I asked him to please examine the back brace which he had ordered as I didn't feel it fit me correctly. Needless to say I saw another doctor who ordered an epidural venogram*, in his words "it was safer than a myelogram". This procedure confirmed the herniation. By this time I was experiencing bilateral leg pain.
A chymopapy* was done in attempt to shrink the disc. Nothing
was gained from this procedure but more back pain! I had a laminectomy*
two months later. An epidural injection of cortisone did not ease the pain
for long and physical therapy which involved TENS* did not help the constant
burning pain in my legs. I was booked for a myeloscopy* ( I was told that
the doctor performing this procedure would be able to visualize my spinal
cord and take pictures of any abnormality) was planned and my pain management
doctor told me that he doubted they would find anything--he thought my
problems were 'in my head'.
I was devastated this but a part of me wondered if he
was right--why wasn't I getting better? The myeloscopy revealed Arachnoiditis.
I had no idea what Arachnoiditis was but, frankly, I was so happy to have
a diagnosis and that my problems were not be psychological! I was then
given the choice of further surgery to remove the scar tissue (the doctor
told me there was a 50-50 chance of success), I refused the surgery. I
am so thankful today that I refused additional surgery.
I have always considered myself very fortunate compared to fellow Arachnoiditis sufferers. Although I've had this condition for a long time I was able to return to school, obtain my nursing degree and work for several years (my work involved counseling and teaching, I knew that I could not do the physical work involved in hospital nursing). I had two children, and although the pregnancies were difficult due to back pain and I had no epidural during labour, it was well worth it!
My symptoms (bilateral burning leg pain, knife-like pain in my feet, back pain and urinary urgency) has escalated these last three years to the point where my physical activities and social life are quite limited. I am currently refusing all invasive procedures and since I am sensitive to a lot of medications, my options are limited. I take a low dose of Elavil (an antidepressant used in low dose for back pain) and anti-inflammatories. I have also found that Primrose Oil and Flaxseed Oil helps alleviate my pain to a small degree.
The constant pain of Arachnoiditis and the ignorance regarding this condition shared by the medical profession and the general public make it a tough road to follow. But the support of fellow sufferers , a loving family, and a positive attitude help immensely."
*see Glossary below.
GLOSSARY:
Chymopapy: injection of an enzyme derived from papaya to dissolve a herniated disc.
Epidural venogram: dye is introduced into the veins in the epidural area to demonstrate any abnormalities in the flow, which would suggest some compression such as from a herniated disc.
Laminectomy: A surgical procedure which is designed to relieve pressure on the spinal cord or nerve root that is being caused by a slipped or herniated disk in the lumbar spine. This procedure is also used in the treatment of spinal stenosis. It includes removal of a portion of the bone comprising a vertebra. An alternative to this is a micro-disc surgery.
Myelogram: A diagnostic procedure where a radiopaque contrast dye is injected into the spinal canal. X-rays are then performed which reveal the anatomy of the spinal canal. Myelograms can be used to diagnosis disk disease, spinal stenosis and tumours of the spinal canal. MRI and CT scanning have largely displaced the use of this more invasive test.
Myeloscopy: looking at the spinal cord through a "telescope" introduced by a small incision.
TENS: a small gadget that gives an electric impulse that
can "block" out the pain; it may work short-term, but does not generally
help many arachnoiditis patients longer term.
READING:
"The Arachnoiditis Syndrome" by Dr. S. Smith : details
about the condition, for use by sufferers and their doctors. Available
from the Arachnoiditis Trust also online *
Janet Kraal has written a book("Released from the web")
about her experiences with arachnoiditis, which she developed after an
epidural anaesthetic for a relatively minor operation. (Publisher: Minerva
Press,
1997.)
WEBSITES: SUPPORT GROUPS;
COFWA:
http://members.aol.com/_ht_a/Ddzevie/index.html
Arachnoiditis Society of America.
http://members.aol.com/Winglett/index.html
Chemically Induced Adhesive Arachnoiditis Support group
Australia.
http://www.redback.org.au/
Arachnoiditis Trust:
http://www.merseyworld.com/arach/disease.html
ASAMS (New Zealand group):
http://www.kiwiwebs.co.nz/arachnoiditis/
INFORMATIVE SITES:
Institute For Low Back Care, USA
http://www.ilbnc.com
National Institute Of Neurological Disorders, USA
http://www.ninds.nih.gov/healinfo/disorder/arachnoi/arachnoi.htm
http://homepages.nildram.co.uk/~backtalk/arach.htm
*
ARACHNOIDITIS TRUST CONTACT ADDRESS:
PO Box 27, Stoneycroft, Liverpool L13 5RS Tel/fax: 0151
259 0222 (Kim
Nevitt, Secretary)
Sarah
Smith MB BS
Date: March 16, 2000
Patron of the Arachnoiditis Trust, November 1999.
"To Strive, to seek, to find AND NOT TO YIELD" (Tennyson)