Living With Arachnoiditis

Many of you have asked that I tell you a little more
about my health problems and exactly what Adhesive
Arachnoiditis is. I can hear you now.....what's that you say....
adhesive what? Well, don't feel badly about not knowing,
because I had never heard of it, until I got it either.
You see, starting back in 1981 and for the next 4 years,
I had 13 operations. Some how along the way either from
myelograms, epidurals or surgery, I ended up with it.
I had an accident that started the chain of events,
which would lead to me being on crutches for almost 5
years and to this day I have to use a cane to ambulate.
7 of the operations were on my leg, so needless to say.....
I have a crippled leg. Plus, as the results of back surgery
that was not done properly...I was left not being able to sit
for over 30 min., stand in one place, or be up for over 2 hours
without resting for at least 30 min. On top of this, the adhesive
arachnoiditis has added much suffering to my life.

What is Adhesive Arachnoiditis?
Adhesive Arachnoiditis is an incurable inflammatory condition
affecting the middle (arachnoid) layer of the meninges (which are
the membranes surrounding the spinal cord).

How does this affect me, you ask? Well, here is the best
description that I can give to you pertaining to known facts
about arachnoiditis.

One doctor has likened the pain of AA to that experienced in
cancer, but without relief of death. Indeed, some sufferers become
suicidal due to the unrelenting pain and the neurological deficits they
experience.There are a range of systemic symptoms which constitute
a debilitating condition that severely impairs the sufferers' quality of life.
AA is incurable and may be progressive in some cases. Usually people tend
to "plateau out" at a certain level of pain/loss of function, but in minority,
a relatively trivial event such as a slight fall or car accident, can set off
a rapid decline.There appears be a possible link between AA and autoimmune
type problems. There are also a number of arachnoiditis patients who have
been diagnosed with Multiple Sclerosis. Those who have a diagnosis of
fibromyalgia in addition to arachnoiditis are probably suffering from the
condition as a secondary feature of the underlying arachnoiditis,
fibromyalgic type symptoms of diffuse muscle tenderness and fatigue
are common in arachoiditis patients. The predominant and most
distressing symptom of arachnoiditis is chronic, persistent pain which
is primarily neurogenic (nerve generated) and thus difficult to treat.
This pain is transmitted from the dorsal root ganglia (DRG) in the
spinal cord, which produces sustained pain impulse from any mild
stimulus such as body movements or even breathing. Pain tends to
increase with activity.

The majority of patients also have transient shooting pains that may
vary in intensity from an insect bite to an electric shock. Some of the
sensory problems may be generated from centres higher than the spinal
cord. This is called central pain, and is due to hypersensitivity of the
central nervous system. This type of pain may include feeling pain from
normally painless stimuli especially from light touch such as clothing.
Changes in temperature commonly trigger this type of pain, so that
sufferers have a very narrow window of comfort as regards temperature.

Tingling and numbness are common features.

Bladder and bowel sensation is diminished, but once the signals of
fullness are perceived, there is burning pain and urgency. This can
lead to embarrassing accidents, especially if there is also nerve damage
to bladder or bowel causing overactivity or sphincter dysfunction.
The areas commonly affected by pain are: In most cases: lumbar,
buttocks, legs (often both), feet, perineum, hip, abdomen arms and
hands, neck, head and face, chest.

Other sensory symptoms include loss of proprioception (sense of limb
position up or down in relation to ground). This can result in tripping
and falls. Temperature perception is sometimes diminished. There may
also be bizarre sensations such as feeling as if you are walking on broken
glass, water running down the legs, or insects crawling over the skin.
Motor nerve damage may cause loss of muscle strength, especially in the
lower back and legs, which may necessitate use of walking aids or even
a wheelchair.

Increase in muscle tone is quite a common feature and makes the legs stiff,
which may have an effect on mobility. Muscle spasms and cramps may
be violent and painful.

Blood pressure disturbance high, low or fluctuating which may cause
dizziness, syncope, or headaches.

Cardiovascular symptoms include palpitations.

Cold extremities.

Increased or absence of sweating may impact on temperature regulation,
which is a common problem.

Some sufferers have intermittent low-grade fevers, malaise and raised
ESR (SED) and/or white cell count. They may also have enlarged
lymph glands.

A common feature is skin rash, often unexplained.

Joint pains are also common, not just in weight bearing
joints, but also small joints.

A number of patients complain of dry eyes and mouth. Other eye
problems include iritis and uveitis.

Miscellaneous problems such as osteoporosis, chest pain mimicking
angina, recurrent sinusitis, shortness of breath are common.

Eye problems seem to be quite common, with patients complaining
of intolerance of bright light. Some patients describe stabbing pains
or tingling and seeing "stars". There is an increased incidence of
severe migrainous type headaches, often with auras.

Recurrent dental problems are quite common. Many patients undergo
repeated root canal procedures but continue to suffer from facial pain
and tooth pain. A number of patients also suffer from periodontal
disease and "burning mouth syndrome".

Extreme fatigue is a very common complaint.

Weight gain is very common.

The effects of arachnoiditis are anxiety and reduced ability to think
clearly, with some short-term memory impairment. These are usually
in direct proportion to the pain level being experienced. Sleep
disturbance is common, and usually directly related to pain. It may
contribute to depression, which is an understandable reaction to
intractable pain, loss of function, loss of role and job, financial and
relationship problems as seen in other chronic, debilitating conditions.

Prognosis:
The outlook for patients with arachnoiditis is unfortunately as yet unknown.
There has only been one medical article written about this, published in
the late 80's by Guyer. He contends that on an average, life expectancy
may be shortened as much as 12 years.

Now, you know about AA....so no more joking about the funny name.
At times, I find this difficult to live with, but then I have to realize that
there is a reason for everything and I must be content in what ever state
that I am in at the time. God knows and cares for me and thus far, I have
found strength through Him to continue on with my life working to serve Him.
I also find that when God closes one door, He opens another. I do not know
what lies ahead, but I do know that the final door will open in heaven and
it will be worth it all. With this in mind, I want to close with a poem that
I recently wrote. I hope that it will touch you and help you to remember
that the best is yet to come.

"The Storms Of Life"

When the storms of life surround you,
And you're tossed about once more.
Remember God is near you,
And He's your anchor in the storm.

Another hill for you to climb
And it may seem so steep;
But when He walks beside you
You know, your needs He'll meet.

God in His infinite mercy
Is sending down His Love.
He will never fail you,
And waits for you above.

One day in heaven,
Where there will be no pain,
Suffering will be over,
Joy will reign again.

Troubles will be over,
Oh, what a glorious day,
When we see Jesus
Praise God, It may be today.

Written By: Joyce Coffey

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