With the recent outbreak of fungal meningitis – caused by a contaminated steroid and spread by epidural injections — I find it necessary to inform any who will listen of the dark secret hidden from our eyes and ears by the medical community.
The name arachnoiditis brings to mind frightening images of spiders and other creepy crawlies. Yet, for the tens of thousands of people that have arachnoiditis, the word paints a picture far more frightening than spiders.
Arachnoiditis is an inflammation in the arachnoid membrane, one of three linings that surround the brain and spinal cord. If the inflammation is left to progress, the arachnoid membrane produces scar tissue that adheres to the nerves in the spinal cord. When this occurs, the nerve roots become stuck together like overcooked spaghetti, and the flow of cerebral spinal fluid is disrupted. In time, these adhesions clump the nerve roots to each other or to the outer wall of the spinal canal. Eventually the nerves become completely encased in a tomb of scar tissue. This causes severe chronic pain and a host of bizarre neurological problems.
Historically, arachnoiditis was caused by infections like tuberculosis, meningitis or from a direct injury to the spine. But today, spinal surgery and injections are the main culprits, especially epidurals used for pain during labor or epidural steroid injections for back pain.
Complications from these procedures are rare, but patients are often not advised of the risks involved.
Dawn Marie Gonzales is one such case. In 2008, she was damaged for life because her spinal canal was violated with an epidural during child birth. During the procedure, her anesthesiologist yelled at her and asked, “Why didn’t you tell me I missed?”
Dawn had no comprehension of the pain she would endure. Last year, while in pain and desperate, Dawn visited a pain clinician who said she must first try epidural steroid injections or she would not receive further treatment. After a series of three injections, the cauda equina region of Dawn’s spine was obliterated.
Today, Dawn is confined to a wheelchair, has to self-catheterize, and wear diapers. She is permanently disabled by arachnoiditis at age 34.
Crystal Gisewhite went into the hospital in 2006 to have her second child as a healthy, young woman with no health concerns whatsoever. A nurse anesthetist named Annette came in to administer an epidural.
“When the needle went into my body I heard a loud pop and at the same time my entire left side felt like it had been struck by lightning,” Crystal recalls. “I couldn’t move my arm or leg and the pain was like nothing I had ever felt before. Annette said ‘oops’ and the nurse in front of me held me tight and whispered ‘I am so sorry honey.’ “
From that moment on, Crystal has suffered from intense pain and strange neurological symptoms. Her life has also been permanently destroyed by arachnoiditis. It has robbed her of her job, family, friends, her health and the person she used to be.
“I am in constant pain, I fall for no reason, I can’t feel my legs half of the time, my back muscles twitch and send shooting pain through my lower body, my feet feel like they are on fire all the time, I have no reflexes in my lower limbs, I stumble and walk into walls and I can’t even work. I am in my own personal purgatory because I chose to have an epidural,” Crystal says.
I also have arachnoiditis. In 1986, at the age of 16, I fell from a moving vehicle doing well above 65 mph and suffered leg and back injuries. Since then, I’ve undergone 20 epidural steroid injections and three surgeries on my back, but the pain has never really gone away
Dawn, Crystal and I suffer horrors that the medical community does not comprehend. We have lost careers, bodily functions, and live with unbearable pain that tempts many to plan their final exit. One of the most critical functions affected by arachnoiditis is that scarring blocks or restricts the flow of cerebral spinal fluid. Arachnoiditis is truly everyone’s worst nightmare.
Dr. Walter Dandy, a neurosurgeon in the 1940’s, explained it best when he said, “The sub arachnoid space is the holder of a person’s soul encapsulated within and should never be touched.”
Dandy was ahead of his time, and his brilliant insight still stands for physicians today. This principle should be taught in all major medical institutions.
Here lies the dark side of epidurals. There is no incentive for physicians to practice restraint because they are well paid for spinal injections and surgeries, whether or not their effectiveness can be proven.
The reality of this problem becomes evident when one understands how the medical profession profits from these procedures they deem as safe and effective. In 2010, according to the American Society of Iinterventional Pain Physicians, nearly 9 million epidural steroid shots were given in the U.S. to treat back pain. The average cost billed to Medicare, Medicaid, or private insurance, is about $400 per injection. That adds up to over $3.5 billion!
That is only one reason why doctors are reluctant to diagnose arachnoiditis and often tell patients the pain is “all in their head.” Another is that doctors are afraid of lawsuits. As long as doctors are allowed to hide behind the belief that arachnoiditis is a rare and orphan disease, many more people will fall victim to a disease that robs them of their careers and relationships and leaves only a life of horrific pain and depression.
If you fear you may have arachnoiditis and need help getting a diagnosis, please visit us at the Arachnoiditis Society for Awareness and Prevention.
Walt Davis has suffered from back pain for over for over 29 years. He was diagnosed with arachnoiditis in 2011 and has yet to find effective ways to control his pain. Walt is one of the founders of the Arachnoiditis Society for Awareness and Prevention.
The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.
Opposing views, opinions and positions about this column are welcomed by American News Report and or Microcast Media Group. Publication or lack of publication of opposing views, opinions and/or positions does not imply, suggest or expressly reflect an endorsement or disapproval of the originating commentary on the part of American News Report or Microcast Media Group.