July Is Arachnoiditis Awareness Month
If I mentioned that Governor Greitens had proclaimed the month of July to be Arachnoiditis Awareness Month In Missouri you would probably say something like, “Huh?”, or “Okaaaay.” That’s understandable. I, too, had never heard of it until this week when Lacy Fowler asked for a few minutes of my time to explain it. Fact is, I didn’t know Lacy either, until she shared her family background – granddaughter of Elmer and Leora Graham and daughter of Marsha, all from the Sweden area (not the country, the community east of Ava). First, the definition (according to Google): “Arachnoiditis is a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. It is characterized by severe stinging, burning pain, and neurological problems.” Lacy’s problems began 18 years ago, on a hot July day in 1999, when she was involved in a motor vehicle crash. After being trapped for four hours, all she remembers is hearing the Jaws of Life cutting away the metal to free her, and the voice of her grandmother. Following the car wreck, Lacy suffered the affects of parathesia, temporary loss of lower limbs and pain controlled only by IV sedation. Then, in 2011, while Lacy was riding one of her purebred Foxtrotters, a dog nipped the horse’s hooves causing the horse to throw her. The fall resulted in a spinal fluid leak that was eventually diagnosed as arachoiditis – but that was after two minor and two major medical procedures within an eight month period. Lacy and her husband found themselves broke, and her condition was no better. In August 2013 Lacy returned to work as a career advisor that had her driving a three hour round trip commute each day. She was working eight-plus hours each day and collapsing into bed every night with intense pain. Within a four-month period she had earned a place in the Management Training Program, but she couldn’t be there because of the pain she was experiencing. The morning her legs gave way beneath her because of the raging pain, her husband picked her up and carried her to the car, and drove her an hour and a half to the emergency room. The instruction she was given was bedrest for a week to see if the pain subsided. The screaming pain continued. Doctors and medical professionals offered little or no relief. Five months later, on Easter Sunday, her mother could take no more of seeing her daughter in so much pain, and she drove Lacy five hours to another hospital in hopes of finding treatment that would relieve the pain. It was there that Lacy requested records from the ER and for the first time she read “arachnoiditis.” Unfamiliar with the word, she “Googled” it and the first sentence she read was, “there is no cure.” From that day until now, Lacy has found refuge in the International Pain Foundation and she revels in the support of her husband and family. “I thank God daily for the life he has given me and the discovery that there is purpose to my pain,” says Lacy. The proclamation signed by Gov. Eric Greitens and Secretary of State Jay Ashcroft calling awareness to those suffering from arachnoiditis points out that “if left unrecognized, untreated or mistreated (it) leads to a variety of symptoms that may result in devastating consequences which can impair the person’s ability to function independently…” After our visit on Monday, Lacy called my attention to websites featuring Dr. Forest Tennant who has spent years studying causes and treatment of pain. If you continue to research websites, they will take you to the National Organization for Rare Disorders (NORD) and to Missouri statutes that allow doctors to prescribe orphan drugs for victims of rare diseases that affect only a handful of people. In reading about this unusual affliction, I found that only about 2 percent of the population experience arachnoiditis. That’s why Gov. Greitens – and Gov. Jay Nixon before him – write proclamations calling for more awareness and recognition of rare diseases such as arachoiditis.