Living With Arachnoiditis – Causes, Symptoms And Patient Experience

Arachnoiditis is a condition where the arachnoid membrane, which is one of the layers that cover the brain, spinal cord, and nerves of the central nervous system, becomes inflamed. As the condition progresses, it can lead to scar tissue formation at the area of inflammation and this can cause the nerves to stick together.

Image: sinicropispine.com

The scenario is known as adhesive arachnoiditis. Over time, these adhesions can harden and become calcified causing a condition known as arachnoiditisossificans.

Image: arachnoiditishope.com

Arachnoiditis can be caused by several issues and they may include any one of the following:

  • Direct trauma or injury to the spinal cord.
  • Infections of the arachnoid membrane.
  • As a complication of epidural injections that contain steroid medications or anesthetic agents such as chloroprocaine which is injected directly into the space covered by the dura mater (the membrane that covers the arachnoid membrane).
  • Previous spinal surgeries may also lead to adhesive arachnoiditis and arachnoiditisossificans.
  • Chronic pressure from a herniated disk or spinal stenosis on the arachnoid membrane.
  • Tumors such as non-Hodgkin’s lymphoma andmelanoma have also been associated with the development of the condition.


Signs and symptoms of arachnoiditis may include:

  • Severe, debilitating nerve pain with tingling and numbness of the limbs.
  • Muscle cramps, uncontrollable twitches, and spasms.
  • Severe shooting pains similar to that of an electrical shock.
  • If the autonomic nervous system becomes involved, patients may experience body temperature fluctuations, loss of bowel and/or bladder control, and sexual dysfunction.
  • Difficulty in sitting, walking, or standing for long periods of time.
  • As the condition progresses, patients will experience worsening of their symptoms which can become permanent and this may lead to permanent disability.

 

Patient experiences

Source: cureus.com

Lacy Fowler explains how she eventually learned of her diagnosis of arachnoiditis in 2014 after she was told by her doctor the year before to “go home and lie down for a week”. Her pain, since she was given that advice, was not adequately addressed since a diagnosis could not be made.

Since then, Lacy has become an advocate for patients with arachnoiditis and a chronic pain delegate for the International Pain Foundation to help spread knowledge regarding the condition since there was a limited amount of information regarding arachnoiditis. She has also gone on to try involving her community to spread awareness of the condition and has set up a Facebook page where information regarding the disease can be accessed.

Source: ajnr.org

Lacy has not only used her time to teach and help others about the disease and those who are also diagnosed with arachnoiditis but she also uses the experience to help her overcome her own anxiety by engaging in an activity that she is passionate about.

Tom Bresnahan was a successful businessman in 2000 and was involved in search and rescue teams in his community as well as being a certified water rescue technician and elected fire commissioner. He decided to sell his businesses and moved to Florida from Washington to try pursuing a career in healthcare and received a degree in radiological technology.

Source:njmetropain.com

While he was studying, he suffered an accident in 2003 where he fell off a roof and needed a triple fusion on his lumbar spine. He then experienced pain spreading to his right leg in 2009 that was interfering with his work so he went back to the doctor who performed the back surgery who suggested administering Tom an epidural injection to relieve the pain.

At the time, he had also previously developed a pseudomeningocele, which is a bulge of the spinal cord at an area of defect in the spine which was a complication that occurred as a result of the previous fusion surgery. A couple of epidural injections were administered over a few months and Tom’s pain got worse after the second injection.

Source: medicalnewstoday.com

The pain would get progressively worse and Tom was sent for further testing which yielded a torn disc above the level of the initial fusion. He went back for another surgery but that didn’t relieve his pain. After that surgery, Tom was in and out of emergency rooms with persistent acute bouts of severe back pain.

He eventually lost his job and consulted with a neurosurgeon who gave him the news that he already had adhesive arachnoiditis, the cause of which was most likely due to the epidural injections that he had received which seem to have been injected directly into the defect of the spinal cord.

Since the diagnosis

Source: deniedsocialsecuritybenefits.com

Since the diagnosis, Tom and his wife divorced and he has been in tremendous pain barely controlling his symptoms and signs with the medication he is prescribed. He decided to become an advocate for patients with arachnoiditis, has been sharing his experiences with others, and has also been trying to warn patients and others about the potential adverse effects of epidural injections.

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