The following patient story was originally shared by our partners at Mass General Hospital:
This long-awaited milestone was possible after the first of two major surgeries she underwent at Massachusetts General Hospital to repair a fistula in her trachea, a complication that came after a previous surgery in her home state of New York.
“My situation was one in a million,” she says. “I had given up hope until I came to Mass General.”
Nancy describes her journey to recovery and the treatment she received as a patient at Mass General. Her care was led by Henning Gaissert, MD, surgeon in the Mass General Division of Thoracic Surgery and chief of thoracic surgery at Mass General Brigham’s Newton-Wellesley Hospital, and Steve Zeitels, MD, chief of the Mass General Center for Laryngeal Surgery & Voice Rehabilitation.
The First of Many Operations
Two years earlier, Nancy, a waitress at her family’s restaurant in Long Island, NY, started to struggle with swallowing her food. On more than one occasion, food got stuck in her throat, sending her to her local hospital’s emergency room. During the third visit to the ER, Nancy began to feel concerned about a potential underlying issue.
During this visit, the doctor performed an endoscopy to observe her esophagus in greater detail. Upon review, they discovered a granular cell tumor. While this tumor is uncommon, her inability to swallow caused greater alarm.
“It was essentially choking me to death,” Nancy says.
Believing that the tumor was malignant, her New York care team proceeded to remove the tumor along with the entirety of her esophagus and the back portion of her windpipe. They replaced her esophagus with her stomach.
Unfortunately, a leak occurred early after the tumor was removed, and a fistula connection developed between windpipe and stomach. Without any warning, Nancy’s entire life drastically changed.
A Series of Trials and Errors
While at first, she was expected to heal over time, Nancy remained at the hospital for the next few months as her care team attempted several unsuccessful operations to repair the fistula. The last procedure separated her voice box from a new windpipe opening in her neck in order to control the leak.
Eventually, Nancy and her family opted to move her home and hire a private nurse to give her around-the-clock care. Her family, she says, were by her side 100% of the time.
“I felt hungry and thirsty all of the time. My family would try to give me food to chew and spit out,” she says. “It was very traumatizing. At one point, I felt like I had given up. I was done.”
Nearly two years after her esophagectomy, Nancy’s care team informed her of one final operation they could try in an attempt to fix her fistula—a surgery to shift her voice box and position her trachea in her chest.
The doctors said this would enable her to eat, but would not fix her inability to speak. Both of her recurrent laryngeal nerves that control the vocal cords were cut.
After much discussion with her family, Nancy’s sister decided to research other institutions in hopes of finding a better solution. She discovered Mass General, and promptly reached out to its Division of Thoracic Surgery.
Nancy traveled from New York to Boston in 2005 to meet with Henning Gaissert, MD, thoracic surgeon at Mass General and chief of thoracic surgery at Mass General Brigham’s Newton-Wellesley Hospital. When Nancy arrived at Mass General, she was unable to speak or swallow, and stomach liquids emptied into her windpipe, constantly threatening her with aspiration.
“Untreated, Nancy sooner or later would have developed massive pneumonias and eventually lung failure,” says Dr. Gaissert. “She required a colon interposition to restore swallowing, a surgical procedure in which a segment of the remaining esophagus was connected to colon and the other side of the colon was connected to the small bowel.”
During Nancy’s consultation, Dr. Gaissert said that he felt confident that he could not only treat her condition, but also help her recover her abilities to eat and speak.
“Going into surgery, Dr. Gaissert grabbed my hand and told me that I was going to be okay,” Nancy says.
After a 16-hour surgery, Nancy was ordered to recover for two weeks at the hospital. After this time had passed, her first attempt to eat without her feeding tube was successful.
“I will never forget the taste of that cookie,” she says.
For the next six months, Nancy returned repeatedly to Mass General, recovering and preparing for her next major surgery—a reconstruction of her voice box to help her to speak again, led by Steve Zeitels, MD, chief of the Mass General Center for Laryngeal Surgery & Voice Rehabilitation. Prior to surgery, she was informed by her doctors that if anything were to go wrong, she could potentially lose her ability to eat again. Ultimately, she says she trusted both Dr. Zeitels and Dr. Gaissert completely and decided to proceed with the second surgery.
Following her second surgery, Nancy anxiously awaited the moment when she could attempt to speak again. At first, the air passage through the vocal cords was too narrow and caused her breathing to be quite labored. To rectify this, her team placed a trach tube in her windpipe. Three months later, the tube was removed, and she has been able to breathe on her own ever since.
“Dr. Gaissert came in one day, removed the trach tube from my throat and told me to give it a try,” she says. “I turned to my dad and said his name. I was shocked at how clear my voice came out. My dad asked me to say his name again and again. I just kept repeating it.”
A New Life
Following her second surgery, Nancy returned to her New York home to adjust to her new and improved lifestyle. Today, she continues to receive support from her friends and family for many day-to-day things such as doing laundry, bringing in the groceries and lifting heavy objects.
“I can’t go running like I used to love doing, but I can go for walks. I just have to go slow to control my breathing,” she says. “Considering everything, these are small sacrifices.”
Most amazingly, Nancy says that, because of her surgeries at Mass General, she was able to pursue one thing she’s always wanted—having a baby. Her son is now seven years old and her pride-and-joy.
“I would tell anyone, even if they need to travel, to go to Mass General,” she says. “They save lives.”