Arachnoiditis - FAQ

Frequently Asked Questions
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What is Peripheral Neuropathy?

Peripheral nerves are those nerves that are not found within the spinal cord. In peripheral neuropathy there is damage to the nerves causing dysfunction and sensory loss. Symptoms are usually found in the limbs and may include sensations such as pain, pins and needles, numbness, a burning sensation, weakness, and in some instances paralysis.

When many nerves are involved the syndrome is called polyneuropathy. There are many causes of peripheral neuropathy, however the cause may not be known. Diabetes, trauma to the nerves, microorganisms, nutritional deficiencies, medications and toxins are among some of the causes.

Neuropathy can be treated and in some cases even cured. The type of treatment depends on the cause. Research is needed to find more effective treatments. For more detailed information, consult the Merck Manual

What is the difference between arachnoiditis and epidural fibrosis?

"Arachnoiditis is chronic inflammation inside the dura, in the arachnoid layer of the meninges...whereas epidural (peridural, extradural) fibrosis is scarring outside the dural sac. It may also be referred to as "adhesions" or "scar tissue".

"Many doctors appear to regard epidural fibrosis as less clinically significant than arachnoiditis, but in essence the nerve root compression arising from epidural fibrosis may cause similar clinical problems in terms of lower limb pain, sensory disturbance and weakness."

"Epidural fibrosis differs from arachnoiditis in that it is more likely to be a localized problem and is generally a post-surgical phenomenon, although it may also be a sequela to invasive procedures such as chemonucleolysis. In cases of arachnoiditis, there is often associated epidural fibrosis, but the reverse is not generally acknowledged, so that patients may be left with a diagnosis of epidural fibrosis and are unable to get a diagnosis of arachnoiditis even when the clinical picture fits. Arachnoiditis is an underdiagnosed condition." - Sarah Smith, MD

Can water-based myelogram dyes cause arachnoiditis?

For the answer we incude the following quotes:

Study by IHJ Bourne, MD

In the Journal of the Royal Society of Medicine Vol. 83 April l990 titled Lumbo-sacral Adnesive arachnoiditis: a review, in the introduction, the fourth paragraph says:

"In spite of the fact that oil-based iodine agents have been abandoned there is still the risk that water-based iodine preparations will in some way cause arachnoiditis .  The present trend towards the use of non-invasive electronic scanning techniques brings hope that myeolgraphy using iodine-based media or indeed any other medium will become a thing of the past." Study by IHJ Bourne, MD

In his article entitled Adhesive Arachnoiditis: Water-Soluble Myelography Dr. Charles Burton,MD reports the following regarding the incidence of adhesive arachnoiditis from water-soluable dyes:

"It is quite small with the water-soluable contrast agents, particularly with the non-ionic agents. This is not to say that the water-soluable agents haven't been associated with significant adverse reactions; their problems, however, have been of a different nature and typically reflect acute nerve cell and meningeal reaction. These reactions tend to be minimal but if the wrong water-soluable agents, or the wrong concentrations of agent, are administered there can be serious consequences such as permanent neurological injury or death."

For the complete article please click here.

What can I do to get better?

As there is no known cured for arachnoiditis you should aim to achieve the best quality of life in the circumstances.

1. Knowledge is empowerment - learn all you can about the condition.

2. Be in contact with others who have arachnoiditis, to share information and experiences and to provide mutual support.

3. Follow a pain management programme provided by a multidisciplinary team at a pain clinic. Your GP should liaise with the pain clinic.

4. Learn to pace yourself according to the level of pain and extent of other disabilities and avoid activities and situations that lead to flare ups.

5. Never give up hope of spontaneous improvement and of discovery through research of better ways to treat arachnoiditis.

6. Remain positive, gain control over the situation and use it creatively for some meaningful purpose.

Where can I go for help? What type of doctor deals with arachnoiditis?

Several types of specialists deal with arachnoiditis - neuro and orthopedic surgeons, neurologists, rheumatologists, pain specialists (anesthesiologists with additional training in management of pain).

The best place to get help is a pain clinic. A pain management programme is prepared for each individual after an initial assessment by a multi disciplinary team headed by the pain specialist and including a physiotherapist, occupational therapist, psychologist, and ideally a neurologist. Regular follow up visits allow for evaluation of the effectiveness of the programme and monitoring of the neurological status. In between these visits your General Practioner (GP) will prescribe the recommended medications and should liaise with the pain clinic team as necessary.

Are there any surgeries that can fix arachnoiditis?

No surgical procedure can cure arachnoiditis.

Removal of the scar tissue by meticulous micro dissection may give temporary relief from pain but the process will inevitably start up again. Some complications of arachnoiditis can be dealt with surgically eg removal of arachnoid cysts if they are causing compression of the spinal cord and nerves; drainage of a syrinx (a fluid filled cavity within the spinal cord which can also add additinal symptoms).

Is there a cure for arachnoiditis?

There is no known cure for arachnoiditis.

Why am I so tired all the time?

Persistent tiredness, or chronic fatigue, is experienced in many chronic disease states eg ME, Fibromyalgia, Gulf War Syndrome, Multiple Sclerosis, chronic infections such as tuberculosis, and also in chronic pain states and chronic stress for any cause. At the Collaborative Pain Research Unit in Australia studies have shown that in these illnesses there is ongoing activation of the immune defence system. Cells become depleted of amino acides resulting in fatigue and pain. Muscle protein is broken down to get the amino acids resulting in fatigue and pain. Muscle protein is broken down to get the amino acids needed by other cells.

In arachnoiditis there is additional breakdown of muscle cells because of the constant muscle activity from spasm, cramps, fasciculations ("rippling" of muscles), involuntary jerks, etc. A healthy person feels tired after a lot of physical activity such as walking, exercising, running, household chores, etc. but feels better after rest, especially after a night's sleep when the body replenishes the used up reserves of energy. Those with arachnoiditis who have constant muscle activity during the day and night (when it is often worse) will be permanently tired since there is no opportunity for a build up of the depleted energy reserves. Add to this the chronic inflammatory state in the spinal canal, thought to be the result of an overactive immune defence system, the chronic pain, and the associated stress in coping with pain and disability, then all the ingredients are in place for permanent tiredness and lack of energy.

NB The Collaborative Pain Research Unit studies were reported in the NSGP, 22 March 2000.

Are bladder and bowel problems associated with arachnoiditis?

Arachnoiditis in the lumbosacral region of the spinal canal can affect the autonomic nerve supply to the bladder and bowel, leading to dysfunction. Bladder: either decreased activity with difficulty passing urine and inability to completely empty the bladder, or increased activity resulting in urgency or incontinence.

Bowel: the usual effect is constipation; incontinence can also occur.

Does arachnoiditis cause cancer in the spinal column?

Arachnoiditis is not known to be a cause of cancer in the spinal column.

Can arachnoiditis cause ringing in the ear?

Arachnoiditis is reported in the Merck Manual as being a cause of Tinnitus. For further information on Tinnitus and arachnoiditis as one of its causes, please consult the Merck Manual

 

Frequently Asked Question - Part 2

From Urinary Problems and Diseases of the Spine:

What is...

• Neurogenic Bladder
• Overflow incontinence
• Storage Dysfunction
• Urge incontinence
• Nocturia incontinence
• Reflex incontinence
• Urinary hesitancy
• Overflow incontinence
• Incomplete emptying sensation