Even as I write my story about how an Epidural Steroid Injection (ESI) changed my life, I do so with great difficulty. It is one thing to talk about it but quite another to actually write it down. Reliving the events of the day that took my life down an entirely different path is traumatic. So, I write this on behalf of all those that want their story to be heard but are struggling to know how to start.

On November 1, 2013 I had an ESI for back pain. This day forever changed my life.

Prior to this injection I had received five in the last two years. Each had helped to diminish back pain and got me back on my feet. For this reason, I went blindly into each one, never thinking to ask questions about the drugs being used, the safety of, or the risks involved and more importantly, I was not told.

My family had a cruise planned in December in celebration of my two daughters—one was graduating from high school and the other from college. Rather than wait for an opening in the schedule of the doctor who had performed my last procedure I went with the next doctor available.

I was very anxious that day. I held a pink cross made from ribbon by my Grandmother, an item that brings me comfort. Yet I couldn’t shake this feeling inside telling me not to go through with this. The staff involved in my care were not friendly, no one identified themselves to me. I had to ask the man wearing a red skull bandana who he was. He very rudely replied he was the doctor doing the injection, still had not identified himself by name. In my effort to lighten a heaviness in the air, I asked him if he had any fancy letters behind his name like the previous doctor had. I assumed all doctors doing these injections did, so I had no way of knowing this would irritate him the way it did. I received a one word answer, “No.” He made a comment on the cross I held, “You are going to crumble that thing to pieces the way you are twisting it.” I got the feeling I had offended him on many levels.

Lying on that table, face down, my tears fell to the floor. Every instinct I had told me to get up, don’t go through with this. Embarrassment, and intimidation kept me from listening to my instincts though.

I was put under light sedation and the procedure began. Next thing I knew I woke up screaming out in pain! The doctor had just jammed the needle through my dura, injecting the intrathecal space with Kenalog. I was knocked back out and the next time I woke up I was in pain like I’d never known. My body felt like it was being ripped in half, my body was on fire from the middle of my shoulder blades down to my legs and feet. Deep, pulsating pain, searing, shocking, and stabbing me. Yet very sheepishly I was told this was “normal sometimes.”

After complaining for several hours, being told I was no longer under this physician’s care, if I needed or wanted further attention I would need to go through the ER, I was discharged and went home. This is not the end to this nightmare in poor treatment, lies and cover ups, however, it is where I will leave this part of my story, for now.

Thus beginning my journey with Arachnoiditis, my new normal. The steroid entering into the spinal cord inflamed the arachnoid layer, causing it to stick together or adhere to the nerves and nerve roots. It has no cure, creates severe, chronic and intractable pain and a wide host of bizarre symptoms. It is progressive as scar tissue surrounds the nerve roots, preventing nerves from functioning properly. Doctor after doctor, one test after the other, and one medication after the next trying to control the pain that was controlling me. It was months before I would know why my body felt like it was trying to destroy me from the inside out. Some wait in wonder for years.

Before this fateful day I was a very active member in the Master Gardeners Association. I would spend hours volunteering my time at our local Demonstration Garden, kept a scrapbook documenting the progress of the garden, and spent many hours in my own yard planting and tending to flowers, all kinds of plants, trees and vegetables. When I wasn’t present in my yard the following spring, it began to suffer; my neighbors knew something was wrong with me. I am a wife, a mother of two beautiful daughters and a grandmother of a now three year old little boy. I have always been very involved with my family, now I have limits as to what I can and cannot do with them. Every time my grandson reaches his arms up for me to pick him up and I can’t is one of the worst feelings. Not one area of my life has been left untouched by this disease, not one, both physically and emotionally. Trying to reconcile the person I was before and the one I am now is an ongoing process.

I learned too late that Kenalog is not approved by the FDA for epidural use. When I looked up the datasheet for it on the FDA website, I was shocked! The datasheet specifically states it is “NOT RECOMMENDED” for epidural use. Arachnoiditis is listed as a potential adverse reaction. I was horrified that Kenalog had been injected into my spine, without mention of the either of these facts. I was told that loss of blood was the primary risk involved, and that came from admissions the day of the procedure.

I attended the FDA Advisory Committee Hearing with my Arachnoiditis friends in November 2014 and also learned that there is NO steroid approved by the FDA for epidural use. Physicians (some) continue to put profits ahead of patient health by pushing injections. Patients are NOT given proper consent. As patients we have the right to make informed decisions about our own care. How are we supposed to do this when we are not told all of the risks?

What is my advice? Listen to that still inner voice and be cautious when you seek treatment. Ask questions, research, and read the datasheet on all drugs that you take, including those that are injected. Check to see if they are approved for the use that your doctor is suggesting for treatment. As patients, we need to be better informed consumers. We can no longer blindly trust what (some) doctors say.

Rhonda is a 53 year old woman who lives in Nacogdoches, Texas with her husband Ron Yoder. She is a mother of two and grandmother of two who is permanently disabled and spends her time raising awareness about arachnoiditis and chronic pain.