My Story: The Dark Side of Epidurals

My Story: The Dark Side of Epidurals

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 and his daughter Kaila.

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.

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There are 6 comments for this article
  1. Terri at 7:50 am

    There are two primary factors that can harm patients related to ESI’s: first, the substance which is injected into the epidural space and second, the possibility of error when doing the procedure – and the unintended consequences if the dura is violated during the injection procedure. As a victim of adhesive arachnoiditis, the horrors of living with the consequences of a failed spinal procedure are brutal: loss of career, loss of function, and relentless pain that affects the entire central nervous system. If I had it to do all over again, I would have stayed away from the knife and shots as living with a ruptured lumbar disc was nothing compared to the pain I endure now. There is chronic pain, which most people have in their life at one time or another – not to be confused with the pain that penetrates your soul.

    Epidural steroid injections are promoted heavily to patients suffering from failed back surgeries, and I believe the risk of harm from ESI’s increases for this patient community for the following reasons explained in the Burton report (Dr. Charles Burton):

    The Mackinnon studies on rats (3) showed that a variety of injectable steroids may damage peripheral nerves if injected intraneurally. The National Health and Medical Research Council of Australia (NHMRC) report (4) from 1994 indicated that the risk of dural puncture is, on average, “at least 5%.” These authors also warn, “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery” because complete local obliteration of the epidural space occurs following surgery and in such cases an attempted epidural injection carries a very high risk of direct entry into the subarachnoid space. It appears that few of the health care professionals who perform ESI have any awareness of this fact.

  2. jean chambers at 10:14 am

    I have had AA, Since 1982, It was just before I was 55, I am now 84, I am in bed most of the time, ( in pain ) or in a wheelchair,, What a life but its reguler , lol, x

  3. Helen at 2:44 pm

    I too have arachnoiditis, contracted from an epidural steroid injection performed by a trainee. It is a life sentence to terrible pain. Epidurials – both the procedure and the medication injected- need to be more highly regulated. One only need look at the recent meningitis fiasco to understand this.

  4. Tory Cain at 3:30 pm

    I too suffer everyday and feel like I am mocked by doctors. I was diagnosed 3/12 and have had doctors playing games ever since. I was injured while on a work related injury. The most important thing is to make sure the doctor uses fluoroscopy when doing EPI.Mine did not and caused lightning bolts to go down both arms while injecting into my neck. I did not realize then but that meant he had caused a dural puncture and struck a ganglion nerve root. Thus injuring me for life.Workmans Comp is a complete joke and has refused to help me throughout the whole nightmare. I have had my own pain clinic write a prescription for an MRI and they called me and said my insurance denied the MRI. By the way their first offer to treat me was to do more epidurals. When I called my insurance to argue about the MRI, they knew nothing about it. I then called the MRI imaging center and they said the MRI was never called in to get approved. I ended up paying out of pocket and had the MRI to the clinics suprise. This is when I was diagnosed. As you can see I have had to fight for my treatment from all sides. I am still seeking treatment 8 months later and suffering every day. I hope this helps someone before making the same mistake I did. Thanks

  5. Claudine at 3:22 pm

    I have Arachnoiditis due to an epidural anesthesia for a very minor surgery in 1992…But I was only diagnosed in 2003, after another surgery, major one, that was not necessary. My life is ruined, completely and it is worsening : the damages of the second surgery can not be fixed. If I had been given the right diagnosis, I would have avoided the 2nd surgery and I would be a little better… Arachnoiditis is getting worse and worse…I am 66 years old and I can’t even hold my grandchildren on my heart.

  6. Rebecca Roberts at 8:54 am

    I am also a victim of Arachnoiditis. I was given a series of three epidurals to treat my Degenerative Disc Disease in 2005. All Injections were done without x-ray. In 1993 I had a Laminectomy from a ruptured disc in my L4-L5, Lumbar spine. I had 10 years worth of scar tissue they were trying to stick those needles through. The first one was done, in their office, with me laying on my side, on their table. It was very painful and that night I ended up in the ER because the pain was unbearable. The next two were done in the surgery center next to their office. Still they were done with no x-ray. I was unaware of these procedures back then. The 3rd injection was the one that I believe my dura was punctured. The Doc, was having a terrible time getting thru the scar tissue, how could he even know where that needle was positioned after moving around trying to find a spot to get through the scar tissue. Only if I knew at that time, that these should have been done with x-ray, I wouldn’t have this devastating disease. Arachnoiditis, is so very cruel, very painful, it totally changes your whole life, Including Relationships. I have lived with this for 7 yrs now, and have many changes in my body. This is going to increase with time. The Pain Doc, that diagnosed me with MRI, said they would keep me out of a wheelchair as long as they could. I have this horrible future facing me. I try not to let it get to me, but some days are hard, when the pain is so unbearable. My wish is that some research is done, and something can be done to stop this disease from progressing. I know we cannot be cured. I pray that this disease is finally noticed and no one else has to suffer from it.