Arachnoiditis is a painful condition that causes people to feel intense and debilitating pain, often in the back, as well as uncomfortable sensations on the skin, sometimes described as feeling like insects crawling.
Adhesive arachnoiditis is the most severe form of arachnoiditis, a neurological condition that can cause extreme pain and sensory problems. It can be a rare side effect that occurs after a back injury, post-surgery on the spine, or after receiving an epidural, or it can occasionally be caused by an infection such as meningitis or TB.
One of the most significant problems people with arachnoiditis experience is chronic pain, especially in the back. According to Unison, back pain is already one of the leading causes of work absences, with over 12 million work days lost due to it each year.
What is arachnoiditis?
There are three protective membranes, also called meninges, surrounding the brain and spinal cord. The brain and spinal cord make up the central nervous system.
The three membranes are:
- Dura Mater.
- Arachnoid.
- Pia Mater.
Arachnoiditis happens due to inflammation in the arachnoid, one of these three linings that are around the spinal cord.
Once the arachnoid becomes inflamed, irritation and scarring can occur. The nerve roots and blood vessels located in this area can also begin to bind together.
Adhesive arachnoiditis occurs due to complications from the inflammation that causes spinal nerves to malfunction due to extensive scar tissue being formed.
Adhesive arachnoiditis is the most serious form of arachnoiditis. If you have arachnoiditis, sometimes, as the condition progresses, so much scar tissue is formed that the nerves in the spinal cord clump and stick together. Many sufferers of adhesive arachnoiditis eventually require the use of a wheelchair, at least some of the time, because the use of their legs becomes limited.
To try to keep arachnoiditis under control, patients may have to be open to using a combination of different treatments to manage their symptoms.
What causes arachnoiditis?
This condition can sometimes arise due to complications from spinal surgery. Although this is the main cause of arachnoiditis, it is still considered a rare complication of a medical procedure.
Other causes of arachnoiditis can include:
- Spinal injury (for example a car accident or significant fall).
- Chemicals (such as dyes used in certain diagnostic tests).
- An infection caused by bacteria or a virus (including viral, bacterial or fungal meningitis).
Arachnoiditis can also be a complication of degenerative disc disease or spinal stenosis. Both of these conditions can also cause the spinal nerves to be compressed.
The condition affects more women than men. This is thought to be due to women often receiving a spinal anaesthetic called an epidural during childbirth (or receiving similar anaesthesia post-childbirth for surgery to repair any trauma). Scientists do not currently have enough data, however, to draw definite conclusions regarding the use of epidurals and arachnoiditis.
Steroids, anaesthetics or dyes that are injected into the spine during medical interventions can sometimes cause inflammation in the arachnoid. In turn, this can cause scar tissue and problems in the nerve endings that lead to them sticking together.
Surgery and trauma to the spine can also cause scar tissue and inflammation, leading to arachnoiditis. A procedure called a lumbar puncture (spinal tap) also poses a small risk of arachnoiditis developing. A lumbar puncture is done by taking a sample of spinal fluid using a hollow needle. This type of test is used to check for infections, central nervous system disorders or cancers associated with the spinal cord or brain.
What are the types of arachnoiditis?
There are several classifications of arachnoiditis, all of which are considered rare. Some of the different types of arachnoiditis are as follows:
- Adhesive arachnoiditis – this is the most severe type of arachnoiditis where scar tissue forms and affects the normal functions of the nerves.
- Arachnoiditis ossificans – a complication associated with the final stage of adhesive arachnoiditis where parts of the spinal cord turn to bone.
- Cerebral arachnoiditis – this form of arachnoiditis affects the brain and results in severe headaches. The most common cause is infection.
- Hereditary arachnoiditis – generally, arachnoiditis is not considered to be hereditary although research has found some familial links, mainly concerning only two families, where several members have been affected by the condition.
- Neoplastic arachnoiditis – this type of arachnoiditis is associated with cancer.
- Postmyelographic arachnoiditis – this form of arachnoiditis is thought to happen after medical procedures that involve the injection of dyes into the body to check for problems in the spinal area.
What are the signs and symptoms of arachnoiditis?
Symptoms of arachnoiditis arise due to inflammation of the arachnoid, thickening and scarring within the tissue (fibrosis), clumping of the nerve roots, a reduced blood supply to the area and nerve damage.
Common symptoms of arachnoiditis include:
- Back pain.
- Muscle pains (especially in the back and limbs).
- Nerve pain.
- Joint pain.
- Muscle spasms or weakness.
- Hypersensitivity/burning or crawling sensations (especially in the feet and on the skin).
- Weakness in the legs.
- Bowel/bladder issues.
- Low libido/sexual problems (this can be caused by the condition itself or as a result of chronic pain or from medication taken to control it)
- Headaches.
- Sensory problems (disturbed vision/hearing etc).
- Numbness.
The symptoms of adhesive arachnoiditis (AA) can vary in how severe they are and often include the following:
- Localised pain in the lower back.
- Pain in the perineum (area between the legs that connects the rectal and genital areas).
- Pain in the legs and feet.
- Uncomfortable tingling sensations.
Sufferers of arachnoiditis may experience any combination of the above symptoms, with the most common being pain, disturbances in vision/hearing/balance and feeling weak.
How common is arachnoiditis?
Arachnoiditis is rare; however, this area is under-researched and it is thought that many people who suffer only mild symptoms may never disclose them to a doctor and are therefore going undiagnosed.
Doctors may also struggle to diagnose the condition, confusing it with other disorders that present similar symptoms, which can also make it difficult to assess exactly how prevalent the condition is in the general population.
Arachnoiditis is currently considered a rare side effect of spinal surgery or epidural steroid injections. Although developing the condition is also associated with contrast dyes used in some tests, such as CT scans, these dyes are no longer commonly used and therefore the risk factor should be significantly lowered moving forward.
Living with arachnoiditis
People who experience chronic pain or neurological issues, such as those caused by arachnoiditis or other conditions, may find that it affects their day-to-day life.
How much their life is affected may depend on:
- How serious their symptoms are.
- How often they experience symptoms.
- Whether they are controlling their condition with medication.
- How much support they have around them.
- How positive their outlook is.
- Whether they are receiving the correct treatment.
- Their natural pain threshold.
- Their lifestyle, family circumstances and responsibilities (such as whether they have caring responsibilities).
The symptoms of arachnoiditis can affect work and relationships. Suffering from inflammation, pain and other debilitating symptoms can make people feel depressed and stressed. It is important that sufferers have people around them who are supportive and understanding.
Some people with the condition will benefit from talking therapies or counselling that can help them to find ways to deal with the complications that arise from the condition, such as constant pain or sexual dysfunction.
If you are unable to work due to chronic pain, you should check if you are entitled to any government support such as disability benefits to help you with day-to-day expenses so you are not having to worry about finding money for essentials.
Arachnoiditis is usually a lifelong condition and it can get worse over time. This means it is important for anyone living with the condition to try to follow a healthy diet and lifestyle, as far as possible. This means following the general rules to stay as healthy and active as possible:
- Eat a balanced diet, include plenty of protein and avoid foods associated with inflammation.
- Stay active (but do not overdo it).
- Make sure that you are getting enough good quality rest and sleep (this can be especially difficult when living with chronic pain).
- Learn to manage stress by having a support network around you, reaching out for help when you need it and being open to therapy or alternatives such as meditation, aromatherapy or mindfulness.
- Avoid smoking and limit alcohol intake (alcohol can impair sleep and may interact badly with pain medication – always follow instructions on the patient leaflet).
How is arachnoiditis diagnosed?
Arachnoiditis can be notoriously difficult to diagnose as it is a condition that shares commonalities with many others. It has been known to be incorrectly labelled as fibromyalgia, failed back surgery syndrome or acute spinal disorder.
When you attend your initial GP appointment to discuss your health concerns, they may decide to do any, all, or a combination of the following:
- Discuss your medical history including any back surgery you have had.
- Ask about your general health and lifestyle.
- Ask about your family medical history.
- Ask for more information about your symptoms, such as what they are, when they began and how intense they are.
- Perform a physical examination.
- Refer you to a specialist.
- Suggest that you need additional tests or diagnostics such as an MRI or lumbar puncture.
An MRI is a common test used to look for symptoms if arachnoiditis is suspected, or if the source of a patient’s chronic pain is unknown and requires further investigation. During an MRI, doctors use a special machine that performs a scan of the patient’s body.
MRI scanners use strong magnetic fields and radio waves to generate a picture of what is happening inside the body.
In cases of suspected arachnoiditis, the doctors will be looking for anomalies in the spinal area such as clumping or thickening in the nerve roots.
Other diagnostics include an electromyogram (EMG). This type of test uses small needles that are inserted through the skin into the muscles to test nerve and muscle function.
A lumbar puncture or myelogram are also options that can be used to test for arachnoiditis or infection; however, both are also cited as risk factors in developing the condition, although the risk is considered to be small.
Can arachnoiditis be treated?
The best approach to treating arachnoiditis is to use a combination of different treatments.
These may include:
- Pain relief medicine.
- Steroid medication.
- Anti-inflammatory drugs.
- Regular physiotherapy.
- Exercise.
- Psychological therapy/counselling.
- An anti-inflammatory and high-protein diet.
- Surgery (although the risk of this is further scarring/trauma to the spine).
Alternative therapies such as hydrotherapy, massage or gentle stretching such as yoga may also help relieve the symptoms of arachnoiditis.
If your doctor thinks you are a suitable candidate for a more targeted pain relief treatment, you could be offered the following:
- Spinal cord stimulation – this is where a device that transmits gentle electrical impulses to the spinal cord is implanted.
- Prescribed medicine – this might include non-steroidal anti-inflammatory drugs (NSAIDs) or even stronger pain relief. They may also prescribe other types of medication such as muscle relaxants.
There is currently no cure for arachnoiditis and as it is a progressive condition, the symptoms associated with having arachnoiditis tend to get worse over time.
Usually, sufferers of arachnoiditis are recommended to follow a regime of different treatments, both prescribed and otherwise, to help them to cope with their symptoms and live as full (and pain-free) a life as possible.
Diagnosing arachnoiditis can be a complicated process. It is important that if you are suffering from chronic pain you persist in getting the correct diagnosis so that you can start the correct course of treatment and get your symptoms under control.
