HAMILTON – Gary Snook knew there would be a terrible price to pay when he boarded the airplane for the long flight back east a couple of weeks ago.
People suffering from adhesive arachnoiditis don’t do well when they sit for long periods of time.
“I have a rule I live by,” Snook said. “Never sit when you can stand. Never stand when you can walk. Never walk when you can lie down.
“By the time I got back there, my adhesive arachnoiditis was flaring,” he said. “There was so much pain in my head that I had a hard time formulating my thoughts when it came my turn to testify. I ended up talking really, really slow.”
Snook was one of two Ravalli County residents who traveled to Maryland recently to urge the federal Food and Drug Administration to clamp down on the use of steroids for epidural use to treat back pain.
While he waited his turn to testify, Snook writhed in pain on the floor in back of the meeting room.
“I needed to be there,” Snook said. “I needed them to know that we exist.”
After hearing from Snook and Terri Anderson of Hamilton, as well as a number of physicians and others, the FDA advisory committee voted to urge that epidural steroid injections with large particulates should be contraindicated (not used) under certain circumstances in the management of back pain.
Snook and Anderson said the recommendation don’t go nearly far enough to protect the public from what they say is a grossly underdiagnosed malady called arachnoiditis.
Both contracted the relatively unknown condition after receiving epidural steroid injections used to treat neck and lower back pain.
Injecting steroids into the epidural space of the spine has been a common procedure for decades to relieve pain from back problems. Many patients are unaware of the risks of damage to the spine if the needles are inserted ever so slightly into the wrong place.
Both Snook and Anderson said their physicians never warned them of the potential risk of contracting arachnoiditis.
The arachnoid membrane surrounds the spinal cord. If that membrane is accidentally punctured by a needle during an epidural, it can trigger inflammation that produces scar tissue that adheres to the nerves in the spinal cord.
Snook told the FDA panel the resulting pain is “beyond all human comprehension or imagination.”
He likened it to being roasted on a spit, boiled in oil or having branding irons touched to your skin.
“The ever present burning is screaming so loud in your head that you can think of nothing else,” he said. “There is a tsunami of pain information flooding into your brain every second of every minute of every day. We live in a Dante’s inferno of pain.”
The nerves inside a person’s spinal cord are supposed to float freely. When a person suffers from arachnoiditis, the nerves well up like overcooked spaghetti and then stick against the inside of the canal or to each other.
Over time, the nerves become completely encased in scar tissue, which causes chronic pain and other neurological problems.
Anderson said people need to know the risks before allowing the procedure.
Patients should be asked: “Are you willing to expose yourself to a lifetime of permanent harm for a temporary benefit,” Anderson said. “As patients, we need to stand up and push back against this harmful procedure which is not solving the back pain problem in America, which is a leading cause of disability.”
The billions of dollars spent on this procedure would be better used for true research and advancement of medicine to solve the back pain dilemma, she said.
Both Snook and Anderson said people should look for alternative ways to treat back pain.
“If people knew the real risks that they could end up living the rest of their lives with bone cancer-like pain that can’t be treated, I don’t think many would choose that procedure,” Snook said. “There are hundreds of thousands of people out there just like us. Most just disappear into the bedrooms where they spend the rest of their lives in pain.
“The only way that we can end our pain is to kill ourselves,” he said. “That’s the only way out.”
Last spring, the FDA issued a warning that epidural injections could cause death, stroke and permanent blindness and paralysis.
Anderson asked the FDA committee in November to take additional steps, including a black box warning of epidural use of corticosteroids similar to what’s already in place in New Zealand and Australia.
She also asked for a warning for steroids misused in spinal surgery. Neurotoxins placed directly over the spinal canal have resulted in adhesive arachnoiditis.
At the very least, Anderson said physicians should be warned not to use any steroids in epidural use for patients who already suffer from adhesive arachnoiditis.
At this time, Anderson said physicians are reluctant to diagnosis the devastating complication. Additional epidural injections can result in catastrophic outcomes for patients, she said.
“This is like living a nightmare,” Snook said. “People have a right to know the true risks. I don’t think it’s right for the doctor to make that decision for you without telling about those risks.
“That’s what happened to me,” he said. “I was healthy before this happened. I was a person who didn’t even have to take an aspirin.
“This procedure is the first thing they do,” Snook said. “They don’t tell you to get physical therapy or try Pilates. Our advice is to try all of those alternatives. It could save you a lifetime of pain.”
People wanting to read more from survivors of arachnoiditis can visit artforarachnoiditis.org/category/creative-non-fiction/survivors-stories.
For information on Pfizer’s Depomedrol, which has been banned for epidural use in Australia and New Zealand, visit medsafe.govt.nz/profs/datasheet/d/Depomedrolinj.pdf.