By Rebecca Roberts, Guest Columnist
My new life of chronic pain started in May of 2005. After being diagnosed with degenerative disc disease, I was given a series of 3 epidural steroid injections with a corticosteroid made by Pfizer called Depo-Medrol.
I had no relief from the first two injections, but my doctor insisted that I try a third one. He struggled to get the needle into the epidural space, probably because of scar tissue in my back caused by a prior back surgery, a laminectomy.
After the 3rd steroid injection, I had a severe, instant headache, which was relieved somewhat when I laid down. The doctor had punctured my dura, the outer lining of the spinal cord, which caused a spinal leak.
He was defensive when I told him about my headache pain, saying, “No way, there was no fluid in my syringe.”
After an unsuccessful blood patch, I ended up in the ER a week later with the worst, throbbing headache I ever suffered. Every time I lifted my head I vomited violently.
The doctor ordered numerous tests and he finally diagnosed me with too much STRESS! I knew something had gone wrong during the epidural steroid injection, yet my doctor blamed me for the harm he did to my spine. My pain worsened over time and it became so intense that I thought about suicide.
Luckily, I found a doctor who prescribed opioids for my intractable pain or I would not be here. Opioids saved my life.
I tried many other drugs, including Lyrica, which is much more expensive, made me tired and affected my thinking abilities. Opioids allow me to do my grocery shopping and care for myself. If I don't have access to my pain meds, I have no quality of life. Opioids keep my pain at tolerable levels. It does not get rid of my pain totally, nothing ever will.
Opioids are often blamed for accidental overdoses, but I know better as I have arachnoiditis friends who committed suicide because their pain was so bad. Some families deny it was suicide because insurance companies will not pay if a family member commits suicide.
Eventually I found a doctor who diagnosed me with arachnoiditis. There is no cure for this pain condition. It is mainly iatrogenic, which means it is caused by a medical procedure.
I also found out arachnoiditis is caused by Depo-Medrol. Pfizer warns against the use of this drug in epidurals in Australia and New Zealand. The New Zealand datasheet states that Depo-Medrol must not be used in epidurals and on page 18 it says it can cause arachnoiditis. Patients need to read the datasheet for themselves before they agree to allow a doctor to do an injection near their spinal cord.
Three months after my epidurals, I could no longer work and had to leave my quality control job at a manufacturing plant, making transmission parts for Honda, which I had done successfully for four years. I loved my job and worked 60 to 70 hours per week. Now I rely on social security disability.
Luckily, my disability was quickly approved. Many of my arachnoiditis friends struggled for years to get their diagnosis. Some never do. According to one estimate, there are 11,000 new cases of arachnoiditis each year, but I think it is much more than that because doctors will not admit to harm.
My medical injury was 10 years ago. I have been on a high stable dose of opioids with no increases. Now there is so much talk with the Centers for Disease Control Prevention creating guidelines to control opioid prescribing.
The CDC is clueless because they are recommending a cap on the daily dosages. How can they estimate a person’s pain levels? Everyone is different, and there are genetic differences and high metabolizers who need higher doses to control their pain. If that happens, my pain will be uncontrolled again, and I worry about my future.
Is this fair to the thousands or even millions of pain patients who may suffer from arachnoiditis, who have have been harmed by the medical community and incompetence of the Food and Drug Administration? Even though the FDA issued a warning on steroids used for back pain, doctors are ignoring it and not telling their patients. We were harmed and now we suffer because doctors are turning us away.
Thank you to producer Gerri Constant and KCBS-TV in Los Angeles for reporting on the dangers of epidural injections. We agree with Dr. Forest Tennant that this pain condition is no longer rare.
Rebecca Roberts lives in Indiana. She is a member and supporter of the Arachnoiditis Society for Awareness and Prevention (ASAP) and the Facebook group Arachnoiditis Together We Fight.
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The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.