Focus on Complex Care
Written by Lindsay Doucette, NNI Program Director
Cerebral arteriovenous malformations (AVMs) are tangles in the blood vessels that connect arteries and veins in the brain. Many people live with AVMs unaware until a blood vessel ruptures and bleeds. This was the case for three patients treated during our mission trip last week to Asunción, Paraguay: 22-year-old Dora, 37-year-old Carmen, and 8-year-old Iam.
Each of these patients experienced sudden and severe headaches and nausea, which eventually led to diagnoses of high-grade AVMs. The complexity of their individual cases pushed the limits of surgical treatment available in Paraguay. But the doctors at the Hospital Nacional de Itaguá were motivated and eager to advance their skills in this type of care. They invited colleagues from our Neurosurgery & Neurology Institute to provide training in the procedures needed, in turn allowing Dora, Carmen, and Iam to receive care from local neurosurgeons supported by an international team of specialists.
Neurosurgeon Dr. José Kuzli, Carmen, and neurosurgeon and AVM specialist Dr. Nirav Patel.
Carmen, Dora, and Iam were admitted to the hospital a week before their scheduled surgeries to allow ample time for brain imaging, COVID tests, and observation. It’s difficult to imagine the courage it took for these patients and their loved ones to anticipate undergoing complex brain surgery like this. Their lives were put on hold as they anxiously waited. Dora, for example, the oldest of three sisters, is in her last year of college studying information technology. Her mother slept all week on a tiny mattress on the floor by her daughter’s bedside, providing moral support. Across the hall was Carmen, a lawyer and single mother. She was concerned about being able to care for her 12-year-old daughter and continuing her work in a field that requires intense focus and critical thinking. Then there was little Iam, the oldest of three children. His mother stayed with him in the hospital while her husband and mother cared for her 2-year-old twins at home in the countryside.
Dora’s mother paced the hallways of the National Hospital in Itauguá throughout the entire eight-hour surgery. She was relieved to finally hear that her daughter was doing exceptionally well after surgery in intensive care.
Paraguayan neurosurgeon Dr. Pablo Maidana woke Iam after his surgery with a question he knew would spur a response: “Iam, Olympia or Serros? Olympia or Serros?” These are the two most popular Paraguayan soccer teams. “Olympia,” Iam whispered as the anesthesia wore off. Dr. Maidana feigned betrayal as a die-hard Serros fan, but was happy to see Iam doing well.
Lindsay with Iam and his mom.
Carmen had the largest AVM and would remain under scheduled sedation for a week to allow her brain to repair itself after surgery. But all of her vital signs looked good, and we left her in good hands at the hospital as we returned home to our lives and routines across the U.S.
Reflecting on our week in Paraguay, our team medical director, Dr. Richard Moser shared, “this trip was a shining success because it was so incredibly focused on a specific need identified by our Paraguayan partners: the need to advance their skills in high-grade AVM surgeries.”
But this trip could not have happened without the courage of our three patients and their families. We are grateful for their trust as they submitted to these complex procedures under the assistance of a US medical team they had just met. Though complex, their surgeries should fully resolve the AVMs that could have posed increasing risk throughout their lives. Through their courage, the training our team was able to share, and the ongoing commitment of the specialists at Hospital Nacional de Itaguá, future AVM patients will have improved access to timely, life-saving surgery, directly from Paraguayan neurosurgeons in Asunción.
Through partnerships and collaborative actions that are measurable and sustainable, the Neurosurgery and Neurology Institute works to build capacity and expertise in Bolivia and Paraguay in order to increase access to safe, affordable and timely health care.
We are committed to alleviating the suffering, death and disability from neurological disorders and injuries that disproportionately impact patients in the countries where we serve.