Elizabeth Bergan of Wakefield has endured four back surgeries, three neck surgeries and suffers from chronic pain in her back and limbs. A procedure that can provide her with significant relief is not covered by Blue Cross Blue Shield of Rhode Island.By JULIE NOVAKWAKEFIELD - Every day Elizabeth Bergan tells herself, "The more I do, the more I can do."It's my mantra," she says.And every day her pain becomes more unbearable, but that hasn't stopped her from trying to live life to the fullest.Bergan, 45, was diagnosed with Chronic Regional Pain Syndrome (CRPS) in December 2005. Formerly known as Reflex Sympathetic Dystrophy Syndrome, CRPS typically affects the arms or legs with intense burning or aching pain. Swelling, alternating hot and cold temperatures and sweating are also common symptoms. Bergan experiences them all every day."It feels like someone is taking a torch to my feet," she said. "It's like a pager set to buzz; they vibrate 24-7."For the past year Bergan's symptoms have steadily worsened. She is unable to walk without the assistance of a walker. Her left foot is in a brace to correct "foot drop," a disorder that stemmed from CRPS which prevents her from flexing her ankle. Her right foot is showing early signs of foot drop and her right hand is starting to stiffen.Medication and physical therapy twice weekly provide little relief. On a scale of 1 to 10, with 1 being no pain and 10 debilitating pain, Bergan never ranks better than a 4 on a good day. For a compassionate athlete who was dedicated to riding her bicycle in marathon races to raise money for people with AIDS, diabetes and multiple sclerosis, the pain - and accompanying treatment - have been difficult to tolerate."I miss walking with my husband and my dogs, going out with friends, visiting my sisters, even housework. I can't do these things like I used to," she said.The emotional toll CRPS has taken on Bergan's life is equally painful. "I feel like a shell of myself," she said.Bergan's medical problems started in 2002 following a car accident in which she was hit by a truck. She has had four back surgeries and three neck surgeries since to correct injuries she suffered in the accident. The onset of CRPS started shortly after her third back surgery and was aggravated by the fourth in March 2006 when screws were removed from her lower back and scar tissue formed on nerves that affect her limbs.According to the Mayo Foundation for Medical Education and Research, CRPS most commonly affects people between the ages of 40 and 60. Treatment is most effective when started early.The cause of the disorder is not clear, though many cases are triggered by trauma to a nerve. Surgery, a heart attack or a gunshot wound are examples of trauma. As in Bergan's case, the disorder can occur after an injury that didn't directly damage the nerves in the affected limbs. Soldiers wounded in the Civil War were some of the first to report symptoms of CRPS and described severe pain even after their wounds had healed.There is hope for Bergan, though. Through a referral from Dr. Edward Kent, her physician at Rhode Island Pain Medicine in Westerly, she found Dr. Gabor Racz. Racz practices in Lubbock, Texas at the International Pain Institute. Earlier this month Bergan went to see him for an evaluation of her condition. He recommended that she undergo a procedure he is credited with inventing that involves injecting medicine through a catheter inserted into the spine. Called Percutaneous Lysis of Epidural Adhesions, the procedure will remove scar tissue from the affected nerves in the spinal canal and, if successful, relieve her symptoms.There is one hitch: Blue Cross Blue Shield of Rhode Island, Bergan's health care insurer, will not cover the estimated $25,000 cost of the procedure. After reviewing Bergan's case Blue Cross deemed the procedure "experimental and investigative" at this time."It was deemed experimental because there is not enough research to support that it is safe and effective," said Kim Keough, the agency's assistant vice president of public relations. "Unfortunately what is out there in terms of research isn't much. There just isn't enough positive results."Blue Cross typically consults experts outside of their agency for assistance in evaluating cases involving new procedures or those not currently covered. For Bergan's case they consulted an anesthesiologist and a medical association for a second opinion."Initially we review the case, but we also think it's good to get an outside opinion to make sure we're not missing something," Keough said. "We have confidence in their expertise because that's what they do."Blue Cross covers medication and treatment for pain on a regular basis, but is cautious when adding a new procedure to their coverage plan."If we pay for every single one of the experimental procedures we wouldn't be here to provide for our members. We have to be very careful about evaluating procedures," Keough said. When asked why the procedure is covered by Blue Cross in Texas, but not Rhode Island, Keough explained that each Blue Cross office is a separate entity."Each insurance company like Blue Cross will determine what their own plan benefits will look like based on mandates and legislation in their state," she said.With some help from friends and family, Bergan is again appealing Blue Cross's decision not to cover the procedure. She has also approached Senator Jack Reed and Representative Jim Langevin about her case. If the decision is overturned and coverage is approved she will fly to Texas to have the procedure on Dec. 5. If not, she will decide what to do next. To date, the Bergans estimate the cost of her care for medication and office visits since the accident is in the tens of thousands of dollars.To help Bergan cope with the day-to-day agony, her husband David, co-owner of the Rocky Point Pub in Warwick and former owner of D.B.'s Pizza in Wakefield, has been a staunch supporter. During her trip to Texas he planted three heart-shaped notes in her suitcase to say "Don't worry about a thing, 'cause every little thing is gonna be alright," the lyrics of Bob Marley's song "Three Little Birds.""He's been there for me since day one," Bergan said.Her friend Lee Guilmette, president of Windswept Mortgage on Main Street, has also been an advocate for Bergan, conducting research on CRPS, helping her with insurance paperwork and accompanying her to Texas to meet Racz. The two have a close friendship and consider themselves sisters. They used to ride in bicycle races to support those with AIDS, diabetes or multiple sclerosis, something Bergan misses for the camaraderie of spending time with her friend and helping others."You knew you were doing it for them because they couldn't do it themselves," she said. "It was very rewarding."When she is feeling up to it, Bergan continues to volunteer in the Wakefield YMCA's Reading to Rover program. She was one of the first to participate with her dog Marley, visiting elementary schools to teach children how to read. Prior to her surgery in November 2005, Bergan was participating regularly and received an award for her efforts."She's always been there for people in need and now she needs some help," Guilmette said. "Timing is of the essence because she's getting worse."While Bergan is worried about losing her ability to walk and continuing a lifetime of medication to relieve her pain, she isn't giving up."The more I do the more I can do," she said. "Even if I don't get better I want to be an advocate for other people so they don't have to go through this."
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