Terri Anderson used to be a civil engineer who could walk 20 miles a day.
Today she’s doing very well to be able to walk around the block.
Gary Snook and his brother built a successful construction business that worked on major buildings in western Montana. He was someone who never got sick, not even a cold.
Today he lives with constant pain.
“For the first 10 years, I would sit on my bed and cry because of the pain,” Snook said. “I don’t have any tears left. Now I make a decision every day to live another day.”
“It’s a true life horror story,” he said.
Both live in the Bitterroot Valley.
Both suffer from a relatively unknown malady called arachnoiditis they contracted following epidural steroid injections used to treat neck and lower back pain.
For the first time, the Food and Drug Administration decided in April to require drug manufacturers to place warning labels on the same type of injectable cortiscosteroids that completely changed the lives of Snook and Anderson.
Injecting steroids into the epidural space of the spine has been a common procedure to relieve pain from back problems for decades.
In 2012, there were nearly nine million epidural steroid injections performed in the United States.
Many patients are unaware of the risks of damage to the spine if the needle is inserted into the wrong place.
“Injection of corticosteroids into the epidural space of the spine may result in rare but serious adverse events, including loss of vision, stroke, paralysis, and death,” the FDA said in its April statement. “Patients should discuss the benefits and risks of epidural corticosteroid injections with their health care professionals, along with the benefits and risks associated with other possible treatments.”
Snook had surgery to have a bulging disk repaired in his back in 1999. The surgery was followed by a series of steroid epidurals to treat the pain.
Snook said his physician never warned him of the potential risk of contracting arachnoiditis.
Arachnoiditis is an inflammation in the arachnoid membrane that surrounds the spinal cord. If the membrane is accidently punctured by a needle during an epidural, it can trigger inflammation that produces scar tissue that adheres to the nerves in the spinal cord.
The nerves inside a person’s spinal cord are supposed to float freely, Anderson said. The nerves of a person with arachnoiditis swell up like overcooked spaghetti and they stick to the inside of the canal or stick to each other.
Eventually the nerves become completely encased in scar tissue, causing severe chronic pain and other neurological problems.
“The arachnoid membrane is a delicate feature that surrounds the spinal cord,” Anderson said. “If the doctor injects the drug into that delicate feature, it’s easily harmed.”
Both Snook and Anderson said their pain feels as if their legs are on fire from the inside out.
“I knew right away when I was harmed,” Anderson said. “It felt like I was walking on broken glass. There is intense burning and there’s never an ending to it. You can’t get relief.”
“The only thing you can do is suffer or choose to end your life,” Snook said. “I liken it to being boiled in oil.”
While both are happy the FDA made its decision to require the warning, they don’t feel like it happened soon enough or was nearly as strong as it should be.
“We were upset that there is no mention of the risk of arachnoiditis,” Anderson said.
The same steroid used in both Snook and Anderson’s treatment has already been banned for epidural use in Australia and New Zealand.
A study conducted by the Henry Ford Hospital in Detroit that was released in 2012 showed patients treated with epidural steroid injections for back pain were also at increased risk for bone fractures.
That risk increased by 29 percent with each steroid injection, the study said.
Anderson received about 20 epidural steroid injections for a ruptured disk in her neck and lower back that followed a surgery where steroid was placed directly over her spinal canal. Her physician said the three injections every six months would help her avoid surgery.
“It would help very temporarily, approximately four weeks at best, and then the pain always came back,” she said. “It always came back.”
Now, Anderson equates getting the shots to something akin of playing Russian roulette.
“If you keep getting more and more epidurals, the mathematical probability of you getting this disease just keeps going up,” she said. “I can tell you from experience, the multitude of risks far outweigh the temporary benefits. This has totally changed my quality of life.”
Both agree that people need to make sure that they ask all the right questions before moving forward with epidural.
“I trusted my doctor,” Snook said. “He had a duty to me to be sure to protect my best interests. He made that decision anyway. If people want to take that risk, they need to make sure the doctor explains all the risks.”
“I never dreamed my doctor would put something on my spinal cord that would hurt me,” he said. “I would never dream that could happen.”
Anderson said there are a growing number of medical professionals advocating for more controls of steroid epidermal procedures for pain.
Washington University School of Medicine chief professor of neurology Dr. William Landau said the FDA missed the point, “namely the lack of demonstrated necessity of steroids at all.”
The treatment is not long lasting and the vast majority of injections are performed without any proof of inflammation at the target, he said.
“Perhaps it is time to re-think our entire pain management philosophy,” Landau said. “After all, the foundation of steroid injections for pain is perilously close to voodoo medicine. In short, epidural steroid injections are nothing more than medical malpractice on a national scale.”
Anderson said people are becoming more connected about this issue through social media. All too often, she said she’s reading her story playing out in someone’s life.
“It’s as if we’re watching an epidemic of harm unfolding right before our eyes,” she said. “It’s the same old broken record over and over again.”
Until now, most of the people who suffer from the malady just went away.
“We’d spend most of our time lying on our beds and suffering,” Snook said. “No one sees us. We would just disappear from the face of the world.”
And what’s worse, Snook said he can’t find anything about anyone working to find a cure.
“There’s nothing happening out there,” Snook said. “This is like an orphan disease. “No cure. No research. No studies. No hope.”
For more information, visit the website: https://www.facebook.com/ArachnoiditisSociety ForAwarenessAnd Prevention