Back from the brink: Rare pain issue nearly cost Burdett her life
Everything they say about dying is true, says Krista Burdett.
“Yes, I saw the light. It's a real thing,” Burdett says. “Nothing happened other than I saw it. It was like picture frame, black at the bottom and a big circle of light in the top corner. A really bright light. Brighter than the sun.”
Burdett was dead for a little more than a minute, her body flushed with a potent cocktail of ketamine and lidocaine.
The mixture stopped her heart.
But it was a risk Burdett and her doctor at UPMC Children's Hospital of Pittsburgh, Charles Yang, were willing to take to stop Burdett's pain.
Debilitating, relentless, agonizing pain.
Despite the scare, Burdett and her doctor were undeterred.
“We went back and did it again,” Burdett said. “I'm not sure where my brain was at this point. We were desperate.”
The 25-year-old's brush with death was just one plot twist on a story arc of sadness, despair and, ultimately, triumph over a rare pain condition that molded her young life.
Burdett was like most 12-year-olds. Outgoing. Active. Curious and eager to try new things.Soccer became her passion, and she found she was quite good at it, blending athleticism and grit with a penchant for physical play.As a forward, she was a potent scorer. She was also fearless.That got her into trouble.It was just an ordinary play during a youth soccer game when Burdett crashed into an opponent. She felt the pain in her hip immediately.But when the discomfort spread to her thighs and then rippled down her shins and sizzled to the tops of her feet and toes, Burdett and her family knew something wasn't quite right.Weeks later, Burdett was diagnosed with a rare pain condition called reflex sympathetic dystrophy, also known as complex regional pain syndrome.Her brain was misinterpreting pain signals. CRPS usually manifests after an injury, surgery, heart attack or stroke.Burdett said her pain was “a 20 out of 10.”Her battle was just beginning.
There were moments of remission for Burdett in the years that followed, stretches of relatively pain-free existence.But they were oh so fleeting.Burdett had learned to somewhat manage the pain, discovering tricks that made it at least bearable.Midnight walks in her sprawling Cabot backyard was one of them. Wearing shorts, no matter the weather to avoid the searing discomfort of the fabric rubbing against her skin was another.Nerve ganglia blocks performed by her doctor also helped briefly.Burdett went on to star on the soccer pitch at Knoch, leading the 16-2-2 Knights in goals scored during her junior year.The pain, though, was always there.Lurking.Ready to strike and send her fleeing to her bedroom in tears.“The mental pain was also a 20 out of 10,” Burdett said. “I was always worried about the pain.”During her freshman year on the soccer team at Pitt-Bradford, Burdett had reached the breaking point.She could no longer live this way.“We have to do something,” Burdett told her parents, Larry and Patty. “I can't keep doing this.”At age 19, Krista Burdett transferred to Carlow College and enrolled in nursing school.She quit playing soccer.The pain and agony from putting her body through the rigors of that sport were just too much.“I knew I wanted to play,” she said. “I was trying to convince myself to play, but I couldn't. I couldn't do it anymore. I retired from soccer and it was one of the hardest decisions to make in my entire life. It was my life. It was the driving force that kept me sane, and quite frankly, alive.”Burdett was in for a fight. A fight for her life.
Medications were the first battle plan to rid Burdett of the pain.They failed.Miserably.Burdett was still getting the nerve ganglia blocks, but they were only giving her short-term relief.“They stabbed me and put all this crap in me, whatever the medication was, I don't know,” Burdett said. “It masks whatever you don't want to happen — then it wears off. The day the pain comes back is the worst day ever.”Over-the-counter painkillers did nothing.“It's candy,” Burdett said. “The 800 milligram prescription-strength. Candy.”Her parents, though, drew the line at opiates.“The great thing about it is my mom and dad were so strong in their opinion that you are not going to give my girl narcotics,” Burdett said. “This is not going to be her gateway.”Studies had also shown that opiates did little to combat the pain of CRPS.At a loss at what to do next, Dr. Yang recommended an experimental — and potentially dangerous — treatment that had shown some promising results.Bathing the then 20-year-old's pain neurons in ketamine and lidocaine to essentially drown and shut them off.“Special K,” Burdett said. “The real stuff.”Burdett can remember sitting in her hospital bed, doing crafts and talking with her mother.She felt nothing.Then again, she was also in a drugged-up state.“I'm high as a kite,” Burdett said. “Feeling all right. Spiders were everywhere. I'm rock climbing in rollerblades.”The next step was to get Burdett walking to clear her head and get the ketamine/lidocaine concoction circulating through her entire body.Burdett rose, took a few wobbly steps toward the door and then felt the world spin as if knocked off its axis.“Whoa,” Burdett said. “I'm going to pass out.”The next thing she knew, she was opening her eyes to frantic faces looking down at her.Six syringes of epinephrine were needed to restart her heart.“My nurse was at my head. Another woman was barking orders — she was definitely in charge,” Burdett said. “The only thing I'm worried about is where is my mom and sister and does my dad know what happened to me?”Burdett caught a glimpse of her younger sister, Carly.“The look on her face will forever haunt me,” Krista said.After a second ketamine and lidocaine treatment also had mixed results, Dr. Yang delivered disappointing news to Burdett and her family.“I can't help you anymore,” the doctor said.
Dr. Yang did refer Burdett to Dr. ZongFu Chen, a pain management specialist in Monroeville.Burdett found an instant connection with the doctor.“He listened to me and my mom about my concerns, fears, etc,” Burdett said. “I hugged him.”Dr. Chen recommended a spinal cord stimulator.A trial stimulator was surgically implanted into Burdett's spine to make sure it would work.Two leads touch her spinal cord at all times and are attached to a battery. With a remote, which she has bedazzled and carries around in decorative purses, Burdett can turn on the electrical current, which feels like needles vibrating along her back.The device helps scramble the pain impulses to the brain. Like a gating mechanism, the pain is shut off by the stimulation.“It worked,” Burdett said, smiling. “It worked. I cried every single day for no reason.”Burdett had the permanent spinal cord stimulator implanted in December of 2015.The recovery was challenging.“I had probably 30-some staples down my spine and they had to fish the leads through my skin,” Burdett said.She had limited mobility for weeks until scar tissue formed around the leads and battery to hold them in place.Once that happened, Burdett was able to get on with a pain-free life.She found that, though, to be difficult as well.
Burdett hasn't had to turn on her spinal cord stimulator since April.Warm weather was always a pancea for her pain. When the weather turns colder, her CRPS tends to return.Only this time, instead of a 20 out of 10 on the pain scale, “it's more like a three or four.”Burdett, though, ran into an unexpected complication in her new life free of debilitating pain.The anguish had so defined her existence for years, she had no idea how to live without it.“I had to rediscover myself,” Burdett said. “I was living life to the fullest, but there was a part of me still wondering what is going on. That's when I realized I have trauma.”Burdett got her degree in social work and also got her EMT certification.She now works for the Center for Community Resources in Butler as a behavioral court case manager. On the weekends, she works sometimes as an EMT.Burdett found recovering from the emotional pain of her CRPS just as challenging as getting over the physical pain.“The day that I stepped into therapy by my own choice is the day I accepted who I am,” she said. “To know this still haunts me and will haunt me really hurts. This isn't just my story, it's my testimony. When I accepted this is my testimony, this is who I am, these are my flaws, I could move on.”Burdett has received unconditional love from her parents and friends. They held her hand. They slept on her futon in college to help her. They supported her.“I will always be grateful for that,” she said.Burdett has healed enough to return to the sport she loves.She is an assistant soccer coach for the Knoch middle school girls team.It's not lost on Burdett that she is coaching 12-year-old girls — her age when her life changed forever.“I think that's why I was drawn to it,” Burdett said. “The passion has come back.”She can be found in the evening shouting encouragement to her young players. Showing them some foot skills. Running with them down the pitch.Things she never thought she would ever do again.“I was sprinting,” Burdett says excitedly. “I don't remember the last time I sprinted.”Burdett is full of joy now instead of full of pain.She will never forget what she went through. She will always remember her brush with death. The bright light. Thankful she got another chance.“Those things shaped who I am,” Burdett said. “I'm very proud I survived that.”
