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When Heather Spaniol woke up from the first of many surgeries to rid her body of a life-threatening infection that was decimating her tissues, the gratitude she felt toward the Mayo Clinic surgeons who’d saved her life was so strong, she didn’t even register how much trauma her body had sustained.
“I think I was in shock. I was like, ‘You’re all so great! I just appreciate everything you’re doing. It’s fine,’” says Heather, a mother of two from Rochester, Minnesota. It was June 2014, and she'd lost a major nerve and most of her right shoulder muscle, in addition to epidermal tissue on the back and front of her right side, to necrotizing fasciitis.
When Heather regained her senses, she realized the scope of the damage. She couldn’t move her right arm, and she lacked sensation on the front and back of her right side. She had a long journey ahead of her, but she was on the road to recovery.
To help in her healing, Heather embraced both traditional treatments and complementary therapies. Today, although she’s still dealing with repercussions from her illness and surgeries, Heather’s recovery is going strong.
The days leading up to Heather’s first surgery turned into a nightmare scenario that began with a seemingly innocuous scrape on her knuckle during a game of tag with her kids. At first, her only symptoms were a swollen joint and a scratch. Then Heather’s neck began aching four days after the incident. The next day, the pain intensified, her neck became stiff and she developed a fever. A day later, immobilized with pain, Heather was hospitalized at Mayo Clinic’s Rochester campus. Her white blood cell count measured more than double what is considered normal.
Heather is convinced that if she’d not been examined by Mayo Clinic infectious diseases physician Mark Enzler, M.D., she would not have survived.
In the hospital, a member of Heather’s care team outlined the edges of the infection on her neck with a marker. By the time Dr. Enzler saw her later the same day, the infection had spread beyond those margins. He believed the appearance of her skin, the severe pain and the progression of the infection were all hallmarks of necrotizing fasciitis.
After finishing his infectious disease training at Mayo Clinic School of Medicine, Dr. Enzler had practiced in Chicago for seven years. During that time, he treated a number of people who had necrotizing fasciitis, often photographing them to use for teaching purposes.
“He came in and knew instantly that I had necrotizing fasciitis,” Heather says.
Necrotizing fasciitis is rare. Only 1 in 100,000 individuals develop it each year. This infection can be caused by a normally harmless streptococcal bacterium that lives on the surface of the skin and inside the body. It sometimes causes strep throat. Necrotizing fasciitis may lead to serious medical concerns, including the need to amputate involved extremities. In 14 to 30 percent of those who develop the infection, it may be fatal.
“This infection develops in the fascial plane between the fat and muscle layers, where it’s like a bacterial superhighway. It can spread rapidly in any direction,” Dr. Enzler says. “The only way to stem that spread is to remove the dead and infected tissue. When we catch it early, it’s important to surgically explore the affected tissue, wash out the fascial area and remove any dead tissue, which could include skin, fat or even muscle. If the infection involves an extremity, there may be a need to amputate.
“When necrotizing fasciitis involves the central body, it gets scary. If it occurs in the neck region, you can’t amputate. Necrotizing fasciitis is one of those conditions in medicine where the clock is ticking. Waiting until the next day is not a good plan.”
Dr. Enzler was confident of Heather’s diagnosis, but it could only be confirmed through surgery. He consulted with a surgeon in Mayo Clinic’s Department of Otolaryngology, who agreed to operate on Heather that day. Early in the evening, Dr. Enzler received a call from the surgical team. His suspicion of necrotizing fasciitis was correct.
After opening Heather’s neck and back and seeing the extent of the necrotic tissue, the surgical team called in Mayo Clinic ENT surgeon Daniel Price, M.D., who had experience operating on patients with the infection.
“It can be hard to know the extent of necrotizing fasciitis from the imaging and the exam because of the way it travels,” Dr. Price says. “You always have to expect the person might be in for a fairly extensive operation.”
The goal of the surgery is to remove all nonviable tissue. The surgeon takes out any tissue that looks abnormal and doesn’t bleed when cut. Getting rid of all the affected tissue is usually done over the course of multiple operations, so the surgeons can identify the areas of tissue that are healing, as well as those that show signs of the infection spreading.
Heather had four surgeries in five days to remove dead and infected tissue. Two days after Heather's last surgery, Dr. Price’s team examined her under anesthesia and found no further evidence of the infection. But she required several additional operations over the next three months to close the large wound on her back and neck from the area where tissue was removed.
Skin and muscle weren’t the only tissues taken out during the procedures. Heather’s surgical team, which included spinal and thoracic surgeons, also removed dead nerves.
“Most of those nerves were sensory nerves — the nerves that give us a sense of touch,” Dr. Price says. “But one was her accessory nerve, which is an important nerve that allows us to raise our arms above our shoulders. When we removed a segment of infected nerve, we tagged the nerve ends with the hope that we would later be able to repair it once the infection had been treated. Unfortunately, when it came time to consider repair, we were not able to.”
When Heather awoke from that surgery, she says she was oblivious to what had happened.
“My family was really somber,” says Heather. “Dr. Price and his team came in to tell me that during the surgery, the dead tissue was quite extensive. They told me I lost a lot of muscle and a lot of tissue and a major nerve in my arm.”
Heather said she was informed that she would never again be able to raise her arm over her head.
“He was so sorry that they couldn’t save that specific nerve in me. But I was so happy to be alive that it didn’t register in my mind that I would be limited in anything in life,” Heather says. “I was just so grateful; I wasn’t hearing what he was saying.”
After her surgeries, Heather completed dozens of sessions in a hyperbaric oxygen chamber to encourage growth of her tissues. Following her discharge from the hospital, Heather also practiced exercises prescribed to her by her physical therapist.
But a turning point came when Heather visited Mayo Clinic’s Integrative Medicine Department. There, she tried the traditional Chinese medicine therapy of cupping to help her regain feeling and motion in tissues that were thought to be destroyed.
“Since I’ve done the cupping, my range of motion is insane,” she says. “Before, I had zero range of motion. Now I can move my arm up, not backward or to the side, but I can go forward. I can lift something out of the cupboard if it’s just above my head. I can feel, especially in my back, pressure pushing on my skin, which I didn’t have before.”
It’s been two years since Heather began cupping treatments, and she continues to gain benefits from them, increasing strength and function in her arm and shoulder.
“Last summer I was able to swim with my kids,” Heather says. “Swimming is something my kids love, and this has given me enough range to stay afloat. That was huge progress to me.”
The gratitude Heather feels about her recovery is an extension of the appreciation she has toward simply surviving the devastating infection.
“It makes you live a different life, a better life,” she says. “You are more grateful for what you have, and everything else doesn’t matter.”