Rare Diseases

Are You Living with the Pain of Arachnoiditis?

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It’s named for a spider, it causes constant pain and there’s no cure for it. If you suffer from it, you know all too well what arachnoiditis is, and you may be wondering what’s happening to your back, legs, and head.

Read on for a summary of what we know about the causes and treatments of this rare disorder.

What is Arachnoiditis?

The simplest way to explain arachnoiditis is that it’s an inflammation of a membrane called the arachnoid, which gets its name from its spider-like shape.

Your brain, nerves and spinal cord are covered by protective membranes called the dura and the arachnoid.

These membranes normally work to keep your spine, brain and nervous system working safely and efficiently.

They circulate cerebrospinal fluid to keep these areas lubricated and fight off pathogens (disease-causing organisms).

At times, however, these protective membranes are unable to fend off an attack. Certain events can overwhelm them and cause them to get “stuck” in a state of inflammation. They get stuck in “fighting” mode and freeze up.

As the disease progresses, the membranes–also called the meninges–will develop scar tissue and fibrosis.

The scar tissue blocks blood and cerebrospinal fluid from moving freely through the nervous system.

The scar tissue presses on your nerve endings and makes the movement of the body very difficult. This is when the pain starts.

Arachnoiditis Causes

Events that can cause the membranes to swell and stay inflamed usually involve some kind of trauma to the spinal area.

They can include:

  • an invasion of viruses or bacteria
  • ingestion of toxic chemicals
  • spinal surgery
  • falls or accidents that severely injure the spine
  • injections, especially epidurals
  • long-term use of catheters
  • use of myelogram dye
  • exposure to meningitis
  • exposure to tuberculosis
  • use of steroids, especially with unclean needles

Arachnoiditis is a major cause of what doctors call “failed back surgery.” In fact, some experts believe that injections such as epidurals and myelogram injections, which are used in diagnosing spinal conditions, can cause this condition in certain patients.

It also happens after some spine surgeries and other surgical interventions to the lower back.

What are the Chief Symptoms of Arachnoiditis?

The early signs of arachnoiditis are usually severe pain in the lower back and legs. The symptoms can vary depending on where the scar tissue has taken hold but they usually include the following:
Severe, persistent headaches

  • Constant tingling in the legs
  • Sharp shooting pain in the leg and backs
  • A crawling sensation on the skin
  • A feeling of water is spilling down the legs
  • Bowel and bladder pain
  • Uncontrollable muscle spasms
  • Hearing and vision problems
  • Dizziness and nausea

Extreme Pain is the Hallmark

These symptoms can signal other conditions. The main difference is the extreme level of constant pain that accompanies arachnoiditis. The feeling is persistent and doesn’t respond to normal analgesics.

People suffering from arachnoiditis often become unable to work or engage in their normal activities.

They suffer from constant physical aches as well as the emotional and psychological stress of living with intractable pain.

How Doctors Diagnose Arachnoiditis

Diagnosis can be difficult because lower back pain is a common symptom of many illnesses and conditions.

Doctors need to watch for some of the telltale signs of nerve damage. For instance, people with arachnoiditis usually exhibit problems with proprioception, which is the ability to walk on an uneven surface.

In most cases, doctors will need to take a complete medical history from the patient, especially of any trauma, surgeries or other treatments to the spine.

If the patient’s pain gets worse after back surgery or spinal injections, that could be a sign of the illness.

Most medical experts at Cleveland Clinic agreed that the best tests for arachnoiditis are the CAT scan (computerized axial tomography) and the MRI (magnetic resonance imaging).

An electromyogram to test the responses of nerve endings will indicate how much damage has occurred to the nerve roots.

Is There a Cure?

Unfortunately, there’s no cure for arachnoiditis. Most doctors recommend an approach that allows people with the illness to cope with their pain while working to regain use of the back, lower limbs, and other affected areas.

What are Some Treatment Options?

The National Institutes of Health recommend a “regimen of pain management, physiotherapy, exercise and psychotherapy” for this illness, and note that “Surgical intervention is controversial since the outcomes are generally poor and provide only short-term relief.”

The experts at the Cleveland Clinic agree, stating that therapy should focus on pain management and that “surgery for arachnoiditis is controversial because outcomes can be poor and can provide only short-term relief.”

Forrest Tennant, a doctor who specializes in pain management, has developed a comprehensive treatment protocol for his patients who suffer from acute or chronic arachnoiditis.

He stresses that the “most critical component of treatment is suppression and control of neuroinflammation,” and that early intervention is vital.

“Aggressive treatment,” he writes, “should be started as soon as arachnoiditis is suspected to stop or slow its progression, debilitating nature.”

Dr. Tennant’s protocol involves four parts.

1. Controlling and lessening inflammation

A mix of high-dosage anti-inflammatory medications including corticosteroids, methylprednisolone, and indomethacin combine in an aggressive approach to slowing inflammation.

2. Exercise

A regular routine of exercise, physical rehabilitation and gentle, daily stretching will help the patient move with less pain and prevent the muscles from getting atrophied.

3. Pain relief

For many patients, lessening inflammation will help with the pain. But most will also need pain medications of varying strengths, including opiates.

4. Protection of nerve endings

Dr. Tennant believes that it’s important to repair the nerve endings. His treatment uses cell growth inhibitors and infusions of vitamin E to help them regenerate.

A Mix of Treatments is the Best Approach

This four-step treatment echoes the usual course of therapy for people with arachnoiditis.

Dr. Edgar Dawson, a specialist in spine surgery at the University of California, recommends a similar protocol for the illness. His approach includes three key components:

Pain medications such as corticosteroids, anti-convulsive medications and opiate medication for cases of extreme pain.

Physical therapy including stretching, rehabilitative exercises, massage, and hydrotherapy.

Transcutaneous Electrical Nerve Stimulation (TENS) which is a treatment that employs an electrical signal to stimulate the nerve endings and spinal cord.

It’s clear that a mixed approach to controlling the pain and stress of arachnoiditis will work best.

Most doctors also suggest psychotherapy and support groups help people cope with the disease’s emotional effects.

Is Spinal Cord Stimulation Useful for Arachnoiditis?

Spinal cord stimulation (SCS) is a common form of treatment for chronic back and leg pain. It involves a tiny electronic device that a doctor implants under the skin.

It works by blocking pain signals from reaching your brain. It does this by sending electrical stimuli to your nerve cells that “scramble” the signals.

SCS does not eliminate the pain itself, but it stops your brain from recognizing it.

There are three types of SCS. With each one, you’ll feel a slightly different effect as it goes to work.

Traditional spinal cord stimulator: You will feel a slight tingling sensation that is not painful.

Burst spinal cord stimulator: These send impulses to your brain at regular intervals, the way your body sends nerve signals.

\High-frequency spinal cord stimulators: These work like traditional SCS devices but they don’t create the tingling feeling.

Is it a good option for arachnoiditis? It might be if used in conjunction with other treatments.

Neurosurgeon Jason Highsmith, an expert in the use of SCS for pain management, recommends first doing a trial of the SCS to test if it works on your pain.

Does Arachnoiditis Go Away?

The only thing that will happen if you ignore your arachnoiditis is that it will get worse. You’ll be debilitated by pain and have to resort to extreme measures just to cope with daily life. In extreme cases, you could end up paralyzed.

How is Common It?

Arachnoiditis is a very rare disease. According to the National Organization for Rare Diseases (NORD), about 11,000 Americans are newly diagnosed with the illness every year.

But the organization also cautions that many cases may be misdiagnosed or entirely undiagnosed.

Arachnoiditis affects women more frequently than men, probably because most women receive epidural injections during pregnancy.

It’s important to note, however, that more than 90 percent of women who get these injections don’t develop the illness.

What are the Different Types of Arachnoiditis?

Adhesive arachnoiditis: the advanced stage, when adhesions and scar tissue develop on the membranes.

Arachnoiditis ossificans: when the arachnoid ossifies, meaning it turns to bone.

Cerebral arachnoiditis: a form of arachnoiditis that primarily affects the membranes around the brain.

Hereditary arachnoiditis: arachnoiditis that has no clear cause but is believed to be genetic.

Neoplastic arachnoiditis: cases where the disrupted tissue forms tumors that are either malign or benign.

What is the Future of Research into Arachnoiditis?

Clinical trials are ongoing to search for ways to combat the symptoms of this baffling condition.

Most major research organizations in the U.S. and other countries have conducted trials into the causes, prevention, and treatment of this disease.

The Centers for Mendelian Genomics has also been involved in studying genes in order to discover if there is a genetic marker for the illness.

Where Can You Go for More Information?

Several medical organizations focus on pain management for sufferers of arachnoiditis and other chronic illnesses.

Among them are the American Pain Society and the National Institute of Neurological Disorders and Stroke of the National Institutes of Health.

Emotional support for sufferers of this illness is critical. An online community called COFWA (Circle Of Friends With Arachnoiditis) offers support and information to anyone suffering from the illness.

The Facebook page Life with Arachnoiditis is another source of news, help, and advice.

You can get solid medical information about arachnoiditis from Dr. Forrest Tenant, who created the four-pronged protocol for treatment of this illness.

His YouTube video provides a detailed, easily understood overview of arachnoiditis, which he calls the disease that’s “the king of all pain.”

Here’s What We Know

Arachnoiditis won’t just go away

Without treatment, your illness will continue to get worse and you’ll eventually become completely disabled. Early intervention to control the inflammation and the symptoms can help slow the disease’s progression.

There is no cure but there are treatments

Most doctors and research studies have found that a combination of anti-inflammatory medications and corticosteroids, gentle exercise, pain relief medications and treatment of damaged nerve endings will help control the illness and make it manageable.

In addition, psychotherapy and emotional support are critical to helping people live with the disease.

Spinal trauma and surgical interventions can cause arachnoiditis

Anything that causes injury to your lower back can lead to pain, and in some cases, to arachnoiditis.

If you’re suffering from severe pain in your back or lower limbs, it’s important to get the right diagnosis.

This is especially true if you’ve been exposed to viral or fungal infections like meningitis, Lyme disease or tuberculosis.

Research is ongoing to find a viable treatment or cure for arachnoiditis

Doctors who specialize in pain management are on the front lines of this research. The involvement of national and international health organizations will be necessary to finally find a cure.

Are You Living with Arachnoiditis?

If you are, you should know that there’s help available. You can maintain your mobility and learn to cope with the disease’s painful symptoms.

Talk to your doctor about treatment approaches, pain relief and ways to increase your mobility. The worst thing you can do is ignore it. It won’t just go away.

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