It was the summer of 2005 in Los Angeles, six years after extensive spinal surgery to correct the aftermath of my broken spine. My pain care specialist, Dr. M., an anesthesiologist, had a slight air of resignation about him as he reviewed all the spinal tests conducted on me.
He asked if I remembered arachnoiditis, a condition he described on my first appointment with him.
“I’m fairly certain that’s what you have, arachnoiditis,” he said
I was referred to Dr. M. by my rheumatologist, who couldn’t help me find a way to reduce the severe pain in my lower back.
I had done enough research on the internet about arachnoiditis to have my heart sink to new lows when he confirmed my worst fear. I learned that this was a chronic nasty, painful, life changing condition. My only solace doing research online was that I came across first person descriptions of the condition that were far, far worse than what I was experiencing.
Dr. M. gave me two options: an implanted spinal cord stimulator (SCS) that would disrupt pain signals from travelling up my spine to my brain, or an implanted morphine pump that could bathe the spot in my spine where the pain originated. Each seemed radical and didn’t appeal to me, but I was desperate for some kind of relief no matter how limited or strange.
Dr. M. explained that arachnoiditis was a chronic inflammation of the arachnoid membrane that protects the nerves in the spinal cord. This inflammation can have many causes: invasive spinal procedures, compression, chemicals, infection and injury.
The inflammation can sometimes lead to the formation of scar tissue and adhesions. This often causes the spinal nerves to bind together, tearing at each other with normal movement. This outcome, Dr. M explained with obvious resignation, was excruciatingly painful, to which I could readily attest.
It was possible, during the surgery to ameliorate damage to my nerves and vertebrae in 1999, that my spinal cord may have been nicked, allowing blood to enter the arachnoid layer. This could have led to the severe pain in my low back, the intermittent pain in my legs and feet, and the constant spasms of the fascia muscles in the calves of both legs.
Knowing that the pain began while recovering from extensive spinal surgery, Dr. M. suspected that was the origin of the disease.
I told him that when I could find no one to help me after the surgery, I resorted to my old routine of walking for an hour every day while slowly working my way back into light to moderate weight lifting and daily meditation.
Dr. M. sadly admitted that this was typical, as physicians are simply not well trained in the diagnosis and treatment of chronic pain.
After much discussion, I agreed to the surgery to implant the spinal cord stimulator.
Dr. M. implanted a temporary SCS to see if it would provide me relief. It did, but not nearly as much as I had hoped for. But out of desperation and a certain amount of self-delusion, I agreed to implant the real thing.
My spinal cord stimulator consists of a small square battery implanted in my left hip. It pushes out the surrounding skin into an obvious square, with two wires attached to it that were surgically implanted on both sides of my spine, about 12 inches above the waist.
When the stimulator is turned on, I feel an electric rubbing sensation that does block some of the pain. I feel the sensation from just above my waist to the soles of my feet.
After several adjustments over a few appointments with Dr. M. and representatives of Medtronic, the maker of the device, I accepted the minimal relief it offered and hoped for the best. But over the next 8 years, I used the SCS less and less. I worried about falling and landing on the battery and really injuring myself. I wanted to remove it, but I procrastinated.
On this last March 1st my worst fear materialized when, in moving back to Chicago, I fell on an unseen patch of ice in our indoor hotel parking lot. I landed hard on the battery and the spot just above my waist where the arachnoiditis region is located. Within a few days I was in the worst pain of my life. I was hospitalized several times to try to get the pain under control.
My new physician increased my OxyContin and supplied me with morphine tablets to help with breakthrough pain. Unfortunately, I continued to spend day after day, week after week in excruciating pain. My physicians, including a neurologist and an anesthesiologist pain specialist, agreed with me that my fall and hard landing may have compressed one of the SCS leads against my spinal column.
My treatment plan is to continue with physical therapy, continue use of the opioids, and the removal of the SCS.
I know from contact with other pain patients who use newer versions of the SCS that many have achieved good results, while others have not. I wouldn’t discourage a person with pain from considering the use of an SCS, but I would certainly warn them about what happened to me.
My unfortunate experience underscores that all treatment options have possible consequences that we need to carefully consider. More personally, we should absolutely pay attention to our misgivings about a treatment, no matter how desperate we feel. Our desperation and unintended consequences can be devastating.
Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog can be found here.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.