Matilde Anacoreta's Story
“It started when I was 13 years old, when I felt an extremely painful and sharp back pain,” remembers Matilde. “It would hurt when I would stand up and walk.”
Matilde Anacoreta moved to New York from Portugal at age 7 with her parents, Maria and Miguel, and her brother, Mateus. By middle school Matilde was a typical American girl, enjoying skiing and surfing. But at age 13, Mathilde had to take a break from her activities when she started experiencing back pain. Her initial workup was unrevealing, but after a year of back pain, Mathilde took a fall one day and found herself unable to move her legs. Fortunately, she was transported by to the emergency room at NewYork-Presbyterian/Weill Cornell Medical Center, where Dr. Jeffrey Greenfield and Dr. Michael Virk were available to diagnose the problem and perform emergency surgery. Together the pediatric neurosurgeon and spine neurosurgeon got Mathilde back on her feet.
"It started when I was 13 years old, when I felt an extremely painful and sharp back pain,” remembers Matilde. “It would hurt when I would stand up and walk."
Her mother recalls feeling helpless about it. "Soon after Matilde told us about the back pain," says Maria, "we took her to an orthopedic pediatrician, where she got an X-ray. At first we were told it was growing pain. Because the pain wasn’t consistent, she began to take Pilates classes to strengthen her core. Later we took her to see another orthopedist but the diagnosis was the same — they recommended that she should do some physical therapy."
The day referred to as "the accident" came soon after Matilde and her family returned from an overseas trip. “We had just been back in the U.S. for a week,” says Matilde. "My back was hurting so I was lying in bed until I got up to go to the bathroom. And then I just fell. I remember that I had no sensation in my legs or abdomen. It was extremely hard to process at first because it was very unclear exactly what I had or what caused me to become paralyzed."
Matilde's mother called 911, and soon they were in the emergency room at NewYork-Presbyterian/ Weill Cornell Medical Center, where they met Dr. Greenfield for the first time. "It was a horrible and frightful moment," says Maria. "We barely understood what was going on, but I remember he told us not to lose hope."
Dr. Greenfield saw what the earlier doctors had missed: Matilde had aneurysmal bone cyst, a benign tumor, growing in her spine. "All the specialists that the family visited didn’t see the cyst growing in Matilde's spine," he says. "Over time as the cyst grew it compressed her spinal cord and started affecting Matilde’s movement. The danger in that situation is that if vertebrae fractures or dislocates — which is what happened with Matilde – the spinal cord can become injured. The usual result is that the patient's movement and sensation is compromised."
Dr. Greenfield told Maria and Miguel that he would be working with Dr. Michael Virk to decompress her spinal cord. "I remember there was no time for a second opinion," says Maria. "They told us time was of the essence! Thankfully Dr. Greenfield was calm and clear about what the situation was."
"The cyst had disrupted the vertebral column integrity, compromising its ability to protect the spinal cord,” says Dr. Virk. "Time is critical in these cases and Matilde required immediate surgical decompression, realignment and stabilization to avoid paralysis. In the days following surgery, we monitored her very closely with aggressive medical management in our pediatric ICU to see if she could regain feeling and movement in her legs."
"I never lost mobility in my arms or my sense of temperature," Matilde says. "For example, I could slightly feel if something was hot or cold, and I never lost my reflexes." But her legs were still paralyzed.
Five days after the first surgery, Matilde was back in the operating room in for another surgery with Drs. Virk and Greenfield. Matilde required a complex reconstruction to ensure durability. The goals of the first surgery were immediate spinal cord decompression in order to minimize neurological injury and to get tissue for pathological analysis which is required for diagnosis. The second surgery allowed us to meticulously resect all of the remaining cyst and perform vertebral body reconstruction with an expandable titanium cage containing bone graft, 12 screws and 2 rods to restore alignment and stability. Matilde remembers feeling more relaxed the second time around. "The first surgery was definitely more horrifying," she says. "It was terrifying. The second time was a calmer experience. In a way I was excited to get the tumor out of me and not have to worry about it."
Matilde returned to the ICU after the second surgery and after a few day had a breakthrough: she was able to move a toe. “This is what we were looking for,” says Dr. Greenfield. “It was evidence that her spinal cord could re-establish those connections again. We were excited to see that, and you can bet her family was even more excited!”
With the cyst gone, Matilde’s focus turned towards recovery. After 15 days in the ICU she transferred to a rehab hospital, where she spent the next six weeks.
"My recovery wasn’t easy at first," she says. "It was hard to try to live my normal life again, especially because I still couldn’t move from the waist down. However, I was surrounded by incredibly supportive friends who came every single day. I was surrounded by family who loved me and cared for me, with my aunts and grandmother flying in from Portugal to spend time with me."
"We don’t realize how lucky we are just being healthy and feeling every muscle in our body," says Maria. "These things we learn as kids — how to walk, jump, ride a bike, controlling the abdomen — these became a huge challenge for Matilde. It’s so hard to lose so much in one moment and even harder to relearn how to do the basic things like even taking a step. You see life in different perspective. You hope your child will come back stronger and inspired."
"Matilde, simply put, beat the odds against her," says Dr. Greenfield. Maria recalls hearing her daughter's recovery would take many more years. "While in the hospital, a lot of doctors passed by. Some told us it would take two years, or even ten years, for her to walk again. Her small steps became big steps again."
Mathilde beat the timeline as well as the odds, and a year after the accident she is back on her feet. But she makes sure to let anyone know that it wasn’t an easy path. “Although I was able to take my first steps in a short amount of time, the recovery journey didn’t end there,” she says. “You have to keep pushing, no matter what everyone else says. And although it is hard you have to keep going. At times it will be very difficult, you have to persevere, look forward, and don’t get hung up in the past. Never let negative opinions from doctors or anyone else impact you, because the only person who can change the future is you — and in my situation, many doctors did not believe I would walk again. It’s important to not let those opinions bring you down.”
Maria is just as thankful. "I can’t express my thanks enough to our family and friends all over the world, especially Matilde's friends that were always with us during her time in the hospital. We were blessed with the doctors, nurses, and physical therapists that helped Matilde in this journey to recovery."
Story courtesy of Weill Cornell Medicine