8 Incredible Medical Stories
Local patients and doctors share eight remarkable tales of real-life medical drama right here in Pittsburgh.
Photography by Becky Thurner Braddock
Morgan Dysert and Dr. Khaled Aziz, director of Allegheny General Hospital’s Center of Complex Intracranial Surgery.
Washington County native Morgan Dysert was finishing up her freshman year at the University of Minnesota in spring 2010. The athletic student figured the minor eye problems she was experiencing came from late-night study sessions. But her vision continued to worsen for a week, so she consulted an ophthalmologist.
The doctor couldn’t find anything wrong with Morgan’s eyes, but suggested she get a brain scan, to be safe. “That’s when we found out about the brain tumor,” Morgan recalls, “and so my mom immediately said, ‘I’ve heard about this Dr. Aziz — we should see him!’” Morgan’s mother was a director of nursing at Allegheny General Hospital, so she was already familiar with Dr. Khaled Aziz, director of the hospital’s Center of Complex Intracranial Surgery.
Morgan’s tumor, called a trigeminal schwannoma, was rare. And it was growing — already impacting the nerves that controlled eye movement and facial sensations. Her face was beginning to go numb. The tumor was benign, but her symptoms would continue to worsen and eventually become unbearable.
Dr. Aziz confirmed that it was a trigeminal schwannoma — and had more difficult news for Morgan and her family: Although these tumors can sometimes be treated with radiation, hers was too advanced. Morgan’s best removal option was a complicated, dangerous operation; the procedure would be particularly difficult due to the tumor’s location underneath her brain, near delicate nerves and the vital carotid artery.
Normally, risks associated with this surgery include bleeding, strokes and infections — yet Morgan says that Dr. Aziz approached her and her family with a confidence and compassion that allayed their fears. “He told me and my mother [about] everything that would happen [in the surgery] and all the horrible things that could go wrong — but [my mom] came out of that discussion smiling and believing everything would be fine. [That discussion] sticks with me. That was amazing.”
The surgery Dr. Aziz and his team performed on Morgan took about eight hours (the first hours were spent on the crucial positioning of Morgan for the extremely precise procedures to come). A separate team of specialists was involved in preparing an electrovisiologic monitoring system, which would watch her nervous system function throughout the surgery.
Dr. Aziz made a small incision at the base of Morgan’s skull above the jaw and went in underneath the brain (but outside the brain covering). Once that layer was dissected, he was able to follow her trigeminal nerve (a cranial nerve with ties to facial sensation, biting and chewing, and more) back to the tumor. The trick was to remove the tumor carefully without injuring any vital structures. He employed microsurgical techniques to ensure accuracy and also utilized a special computerized navigation system — similar to a car’s — as he moved, helping him to quickly target the tumor.
Finally, he used delicate ultrasonic aspirators to break up and suction out the tumor without damaging surrounding nerves and tissue — another example of the high-tech tools that allow today’s brain surgeons to cure what was once inoperable. “We were able to take out the tumor with minimum manipulation,” Dr. Aziz says, “so her symptoms began to disappear.”
Morgan’s recovery progressed swiftly. She was only in the hospital for five days, and her symptoms were gone in a week. She was able to start the fall semester of her sophomore year, with a pretty amazing story about what she’d done on her summer vacation.
Dr. Benjamin Shneider, director of pediatric hepatology at Children’s Hospital of Pittsburgh of UPMC, and Sam Zarpas.
At just a few months old, Sam Zarpas of Norfolk, Va., faced a dangerous medical crisis unprecedented in babies his age. It began with a rare autoimmune disorder called idiopathic thrombocytopenic purpura (ITP), for which local doctors treated him with steroids — the standard treatment, though the medication often impacts growth in children.
This worked initially, but a few months later, Sam’s eyes turned yellow; he had become jaundiced, indicating liver failure. Doctors thought he had autoimmune hepatitis, in which the body’s immune system attacks its liver. More steroids were prescribed but didn’t help, and his parents were frustrated and scared. “Health-care [professionals] here couldn’t figure out what was going on,” says his mother, Cindi, “but they kept pumping him full of steroids. They didn’t want to think outside the box.”
Fortunately, Cindi was friends with a doctor at Children’s Hospital of Pittsburgh of UPMC, so Sam’s liver biopsy was sent there. It attracted the attention of Dr. Benjamin Shneider, director of pediatric hepatology: “It’s rare to have ITP at 2 months [and] rare to have liver disease at 7 months,” Dr. Shneider says. “Were the two problems connected? That was the rub. Sam also had significant side effects from the steroids — high blood pressure and growth trouble. He was very sick.”
Though Sam was initially evaluated for a liver transplant, Dr. Shneider knew that this major surgery might prove only a temporary solution. He felt that the key to Sam’s immediate and longterm health would be a thorough and accurate diagnosis of his unheard-of combination of conditions.
Examining Sam’s liver cells, Dr. Shneider saw evidence of the rare giant cell hepatitis, and a condition called Coombs’ positive hemolytic anemia, in which antibodies destroy red blood cells. “But in Sam’s case, antibodies were destroying his [blood’s] platelets,” Dr. Shneider explains. “My take was that he had a disease similar to the Coombs’ subset of giant cell hepatitis, but instead of Coombs’, he had ITP. This situation was effectively unique.”
Dr. Shneider felt the medication Rituximab, used for overactive immune systems, could work for Sam, though it had never been used for his specific situation. “We were in uncharted waters with the experimental use of medication on someone so young,” says Cindi, “and the potential side effects were awful! But Dr. Shneider had a wonderful demeanor and confidence, and he kept us calm.”
Sam received four weekly doses of Rituximab, and within three months, his blood clotting factors and liver enzymes were just about normal. Doctors tapered his steroids to a minimum, ending his high blood pressure and growth problems. “He’s 3 now, and you’d never know he was sick a day in his life,” says Cindi. “He’s walking, talking, the right size and shape.”
From left: Dr. Clifton Callaway, UPMC Presbyterian executive vice-chair of emergency medicine; Eric Tocco; Dr. William Katz, clinical director of echocardiography at UPMC Heart and Vascular Institute; Dr. Maria Baldwin, assistant professor of neurology; and Dr. Catalin Toma, of UPMC’s Cardiac Catheterization Laboratory and an assistant professor of medicine.
Eric Tocco was playing racquetball last fall when he suffered a heart attack — yet the 43-year-old had no history of heart disease. An automated external defibrillator was used, but Eric’s heart didn’t immediately recover. Paramedics transported him to nearby UPMC St. Margaret Hospital, where CPR was performed for a full 30 minutes before he finally regained a pulse.
Once stabilized, Eric was transported to UPMC Presbyterian Hospital, where he spent more than a week in a coma and on life support. Cardiac arrest is brutal, as the risk of death is 10 times higher than physical trauma and three times higher than stroke. But Eric’s chances for recovery were significantly improved, thanks to UPMC Presbyterian’s Post Cardiac Arrest Service (PCAS), a coordinated care program for all patients who’ve undergone CPR.
PCAS is used from the earliest moments of a patient’s treatment through their discharge from the hospital and subsequent rehabilitation. “This was an effort we began in the last decade to improve the quality of care we provide to cardiac-arrest patients,” says Dr. Clifton Callaway, one of the program’s co-creators. The multidisciplinary program involves cardiologists and neurologists, as well as critical-care, emergency-medicine and rehabilitation specialists. “We haven’t invented new technology or new drugs,” Dr. Callaway says. “It’s taking critical pieces of care and sticking them together in a coordinated fashion.”
At UPMC Presbyterian, Eric initially underwent therapeutic hypothermia, which lowers the body temperature to 92 degrees Fahrenheit (thus preventing further brain damage). “The most common cause of death for cardiac-arrest patients who’ve undergone CPR is brain injury [due to lack of oxygenated blood],” explains Dr. Callaway. “About two-thirds of those who survive CPR and make it to an intensive-care unit have brain damage so severe that they don’t survive.” Before Eric awoke from his coma, the extent of his brain damage was not known.
Over the next several days, Eric received the care that PCAS is designed to provide. Intensive-care doctors maintained his blood pressure and electrolytes (minerals in body fluids), and his ventilator was managed to promote brain blood flow. Eric’s brain had swelled, so doctors gave him fluids and positioned him strategically in his bed to treat the swelling. And when he experienced myoclonic seizures, neurologists were able to treat him instantly and aggressively. “Traditionally, patients simply didn’t survive myoclonic seizures after cardiac arrest,” Dr. Callaway says, “and now, remarkably, we’re seeing them discharged from the hospital.” Meanwhile, though Eric was still comatose, cardiologists provided timely cardiac catheterization to open the blockage causing his heart attack..
On day no. 9 in the hospital, Eric awoke from his coma. “The first person I saw was my daughter,” he recalls. “I kept trying to say, ‘I love you’. My mouth was moving, but nothing [came out]. The most important thing is that I’m here. I’m alive and kicking.”
Because of the PCAS program, survival rates for patients like him have risen from about 30 percent to above 40 percent, says Dr. Callaway. “Eric had a number of features that traditionally — and by that I mean seven or eight years ago — were fatal,” he says.
Today, Eric — one of over 200 patients treated by PCAS at UPMC Presbyterian last year — continues his rehab for slight memory problems and a leg injury related to his CPR chest compressions. “Even though I have a little way to go, I’m willing to do what it takes. I’m grateful for where I am,” he says. “I know it’s a bit of a miracle.”
From left: Liane Santilli; Isabella Santilli; Dr. Ronald Thomas, director of maternal-fetal medicine for West Penn Allegheny Health System; and John Santilli.
In 2008, after seven years of fertility treatments, Liane Santilli became pregnant with twins. Naturally, Liane — a nurse anesthetist at Allegheny General Hospital — and her husband were thrilled. But there were concerns about one of the embryos.
“When I had my first ultrasound at three weeks, it wasn’t even visible — it looked like a bruise on my uterus,” says Liane. Doctors initially thought the embryo would be reabsorbed by the body and not progress to the fetus stage. Yet this baby would defy almost everyone’s expectations.
Dr. Ronald Thomas, director of maternal-fetal medicine for West Penn Allegheny Health System, specializes in high-risk pregnancies, and Liane’s certainly fit that bill: She carried twins (a boy and a girl), was of “advanced” maternal age (at 32) and had undergone fertility treatments. “It was clear that the [female] twin was not growing well,” Dr. Thomas says. “Liane even heard from one specialist that there was ‘no hope.’” Dr. Thomas felt otherwise.
Five months into the pregnancy, Liane experienced significant bleeding and suddenly became a patient at her workplace. At first, it looked as though neither twin would survive, and Liane was advised to consider terminating the pregnancy for medical reasons. “My family was there in my hospital room [with] all my friends — we talked about the choice I had to make and prepared ourselves for the end,” she recalls. “Then Dr. Thomas walked in with a list of medications [I could take]. He said, ‘You can sit in this room as long as you want. It’s up to you.’” He wasn’t guaranteeing, but he was giving me an option. So I looked at my friend and said, ‘I’m not [terminating]. I’m gonna sit here as long as I want.’ Dr. Thomas never gave up on us.”
Liane stayed put for two months, as Dr. Thomas and the rest of the crew in Allegheny General Hospital’s Program for High-Risk Obstetrics worked to monitor the health and development of the twins. There were two crucial markers they needed to reach for a viable live birth: a minimum gestation of 27 weeks and a baby weight of at least 600 grams (one-and-a-half pounds). As the girl continued to lag behind in growth, it became, Dr. Thomas says, “an ongoing tightrope walk to reach those goals — and even if we did, there were concerns about survival.”
Other problems developed, including the boy’s unusually low-lying placenta and the girl’s partially separated placenta (which could have led to dangerous bleeding at delivery). Then, at just over 29 weeks — less than seven months — Liane began bleeding again and went into labor. Dr. Thomas determined that the boy had developed an infection; the twins had to be delivered immediately via C-section. The boy came out first, weighing more than 3 pounds, followed by the girl, who weighed just about the minimum — one-and-a-half pounds.
Both babies were rushed to the neonatal unit, placed on ventilators and treated for infection, as well as the respiratory distress common to preterm infants. From that point on, though, Isabella and her brother John would continue to make forward progress. She stayed longer in the unit than he did, but in time, she was growing and thriving.
More than three years later, there have been only minor complications from Liane’s difficult pregnancy. Now, she says, “they’re normal, healthy kids. John is into cars, trains and trouble. Isabella had some feeding issues [which are common with premature babies] that we worked through. She’s a bit small for her age, but no one ever believes she started out at a pound-and-a-half.”
Crystal Martin and Dr. George Mazariegos, director of pediatric transplantation at Children’s Hospital of Pittsburgh of UPMC.
Imagine a lifelong diet so restrictive that you can’t eat meat or dairy. Even vegetables must be rationed. The stakes are high, since a dietary misstep can lead to brain damage or death. That’s been the reality for people with Maple Syrup Urine Disease (MSUD), an inherited genetic disorder that prevents the body from processing certain amino acids found in proteins.
MSUD is rare — affecting less than one in 200,000 children — and dangerous. Even the severe diet can’t prevent a minor illness from potentially triggering a fatal metabolic crisis. But a cure now exists, in the form of liver transplants performed at Children’s Hospital of Pittsburgh of UPMC. A new liver gives MSUD patients the enzymes necessary to process proteins.
About a decade ago, the transplant center at Children’s — under the direction of Dr. George Mazariegos, director of pediatric transplantation — developed the world’s first comprehensive, multidisciplinary medical protocol for performing these transplants for MSUD patients. “This program really constitutes a medical breakthrough,” Dr. Mazariegos says.
Late last year, 15-year-old Crystal Martin of Lancaster County became the 50th MSUD patient whose life was improved by a liver transplant at Children’s. Before the operation, Crystal’s disorder had a significant impact on her whole family, says her mother, Lorraine. “Starting with the food restrictions — she could hardly eat anything. And we’d always have to worry about her amino-acid levels. If they went up, she wouldn’t feel well. She got sick easily and missed so much school — it affected her ability to think clearly, too. We [also] had a cloud hanging over us of possible brain damage.” Crystal’s family heard about the transplant option at a symposium Children’s hosted at the Clinic For Special Children, a genetic-disorders treatment center near their home.
“I was privileged to collaborate with a remarkable team of people in the development of this program,” says Dr. Mazariegos. The group includes geneticists, gastroenterologists, hepatologists and metabolic specialists from Children’s and the Clinic For Special Children. “Experts from different institutions working together isn’t that common,” Dr. Mazariegos explains, “but these colleagues put individual and institutional goals behind the shared goal of what would be best for the patients.”
Transplant surgery for MSUD patients differs from conventional transplant procedures in several ways, including routine surgical issues. “There’s the potential for serious metabolic and neurological crises during and after surgery if we’re not very careful,” explains Dr. Mazariegos, “so we developed contingency plans for everything.”
On Nov. 27, the Martins were notified via phone that a donor liver was available. Crystal underwent a successful transplant at Children’s the next day. “She can’t stop telling everyone how happy she is,” says Lorraine. “It’s a miracle how this changed things. She says her mind is totally clear, and she’s really eating for the first time — she never knew what meat, eggs or pizza tasted like! We’re so appreciative of that awesome hospital and so grateful to the donor’s family. We can’t thank them enough.”
Performing 50 successful MSUD transplants is precisely what Dr. Mazariegos had planned. “We feel a high degree of responsibility with this program,” he says. “Any misstep could impact subsequent patients, as well as the transplant field as a whole. It’s exciting to see these transplants lead to dramatic changes for MSUD patients, their families and communities.”
From left: Susan Killmeyer; Dr. David Bartlett; and Dr. Herbert Zeh, both of the division of surgical oncology at UPMC CancerCenter.
After experiencing serious food poisoning for several days, Susan Killmeyer knew she needed to visit UPMC Presbyterian Shadyside Hospital, where she works as a clinical director. There in the ER, a CT scan of her abdomen revealed a danger much greater than a routine case of food poisoning: a cancerous tumor on her inferior vena cava, the vein that carries blood from the lower half of the body into the heart.
The food poisoning may have saved her life, says Dr. David Bartlett, a cancer surgery specialist at UPMC CancerCenter. “Her cancer is among the rarest — [it affects] about five in a million,” he says, “and it takes so long to develop symptoms that by the time it does, it’s usually beyond what we could treat.”
Dr. Bartlett, along with a team that included Dr. Herbert Zeh, a cancer surgeon at UPMC CancerCenter, determined that Susan would have to undergo a long, complex operation to remove the tumor. “It wasn’t easy news to hear,” she says, “but I’m a take-charge person — I don’t feel sorry for myself. So from my hospital bed I compiled a list of physicians for my ‘team’ — and Dr. Bartlett was on it. I knew he was a good surgeon.”
“Her tumor was in a tricky area and involved her liver, so to reach the tumor, we had to take out the vena cava,” Dr. Bartlett says. This created complications, including problems with blood pressure and clotting as well as serious bleeding — all of which put Susan’s brain at risk. Throughout the nine-hour operation, continuous efforts to keep her alive were made — including massive transfusions of blood products, and both medication and intermittent clamping of the heart’s main blood vessel to maintain pressure to the brain. “It was a Herculean effort by a large team,” says Dr. Bartlett.
The surgery was a success, but Susan was back in the operating room several hours later because of bleeding. More surgeries followed, including one where she was so unstable that she couldn’t be moved from the ICU. “So we did the operation there,” Dr. Bartlett says. Multiple surgeries contributed to Susan’s kidneys failing, while the length of her sedation led, temporarily, to total body paralysis. “Her case was unique,” says Dr. Bartlett. “She seemed to have every problem you could have.”
Susan was in the hospital for three months. “The day I left, I could barely sit on the side of the bed,” she recalls. “I had to learn to feed myself and to walk again.” Her recovery was arduous, but Susan was able to return home (and get back to work).
“The psychological aspect of a recovery like Susan’s is huge,” Dr. Bartlett, says, “and she was very strong. Even when paralyzed — her kidneys failing — she maintained good spirits.”
Thinking about her adult twin daughters gave her strength, Susan says. “My husband died 17 years ago, and there was no way in hell I was leaving my kids without a parent.” Susan’s short-term goal was to see her girls get married. “One daughter’s wedding was last October and I was able to walk her down the aisle,” she says. “My other daughter is getting married this month, so I’ll be doing it again.”
“It’s rewarding to take a challenging case like Susan’s and give her hope for the future,” says Dr. Bartlett. “What allows us to do it are all the people and resources at this hospital — from the anesthesiology department to the ICU nurses and many others. The whole system supports a case like this.”
Dr. Neil Busis, chief of neurology at UPMC Shadyside Hospital, and Lauren Cantalope.
In June 2011, 23-year-old Lauren Cantalope, an X-ray technician in Hastings, Pa., began suffering from terrible headaches. It was the start of a medical mystery that would land her in a coma — and near death — until the tangled threads of her symptoms were unraveled by Pittsburgh neurologist Neil Busis.
Lauren’s headaches were soon accompanied by a high fever, facial numbness and severe nausea. “At first, my doctor thought it could be migraines or a stomach bug,” she recalls, “but I kept getting worse.” She had tests done at an Altoona hospital, but the results only muddied the waters, revealing that it might be meningitis or encephalitis. A spinal tap showed inflammation and unusual cells, suggesting meningitis again — or even leukemia.
By this point, Lauren had sunk into a state of severe fatigue and confusion. She was transferred to the Hillman Cancer Center, a division of UPMC Presbyterian Shadyside Hospital, for what doctors thought would be a cancer diagnosis.
Dr. Busis, the hospital’s chief of neurology, was asked to consult on her case. “I didn’t think it was cancer,” he says. Instead, he suspected a benign ovarian tumor, called a teratoma, which he noticed on her CT scan might be the cause of her symptoms, albeit in a very unexpected way. Meanwhile, Lauren’s condition became critical. “Within two days of arriving, she was comatose, on a ventilator and seizing,” says Dr. Busis. “Highly unusual for a healthy young woman.”
As he was pondering the mystery of Lauren’s condition, Dr. Busis remembered a neurology lecture he’d attended a year earlier. “A light bulb went off,” he says. The speaker had briefly mentioned the very rare paraneoplastic syndrome, in which young women with tumors like Lauren’s suffered from brain disease when the tumors triggered the body’s autoimmune response. Although only 150 cases of the disease had ever been documented, Dr. Busis realized that Lauren’s symptoms were almost identical. “The immune system fights off the tumor threat with antibodies,” he explains. “[The] problem is [that] the antibodies cross-react with normal brain tissue and make the brain sick.”
Curing the syndrome called for tumor removal and treatment of the immune system. “So I called an obstetrician/gynecologist here at the hospital,” Dr. Busis says, “and told him, ‘I think the teratoma is the problem. I’d like you to take it out; it might save her life.’” The simple operation went off without a hitch. Post-surgery treatment of Lauren’s immune system included intravenous immunoglobin to block bad antibodies and steroids.
Lauren’s symptoms abated; Dr. Busis had made the right call. While she had only been in a coma for 24 hours, she did not wake up for 3 weeks after the surgery. Only then did she began to learn about all she’d been through and about the doctor who had saved her life. “Honestly, everything from that July to September is a blur to me,” she admits. “I don’t remember much about Altoona or Shadyside … or meeting Dr. Busis. But my family told me how great he was, along with everyone else at the hospital.”
It took Lauren a long time to feel truly better, but given her grave illness, Dr. Busis calls it “a remarkable recovery;” she spent a month in the hospital and several more months in physical, speech and occupational therapy in Altoona. Today, she’s home in Hastings, working again and also engaged. She says “things are finally normal again.”
Dr. Raymond Benza, director of Allegheny General Hospital’s Advanced Heart Failure, Transplant and Pulmonary Vascular Disease Program, and Jean Magazzu.
Two years ago, Jean Magazzu began having trouble breathing. Her doctor thought it could be allergy-related — or perhaps a case of bronchitis. But multiple rounds of antibiotics didn’t help, and her breathing worsened to the point where she couldn’t even walk across a room without sitting down.
An X-ray revealed the frightening truth: Her lungs were filled with blood clots and scar tissue, a symptom of pulmonary hypertension (PH). She was immediately transferred to Allegheny General Hospital, where cardiologist Dr. Raymond Benza diagnosed her. “Pulmonary hypertension is a rare disease, affecting only 15 people in 1 million,” says Dr. Benza, a nationally recognized leader in the treatment of PH. “It’s also rapidly progressing and deadly — probably as mortal as any cancer we treat.”
Jean’s form of PH — related to the chronic clots in her lungs — was even more rare. The disease is characterized by high blood pressure in the lung’s pulmonary artery, which forces the heart to essentially work itself to death. “When she came to us, she was already in the throes of severe heart failure,” says Dr. Benza.
Along with his team, he determined that Jean needed to undergo an extremely delicate and difficult surgery to remove the clots and scar tissue. The procedure can take 12 hours, and requires stopping the heart and deep-chilling the body and brain; it’s performed in only a handful of U.S. institutions.
Fortunately, AGH recently joined that exclusive club. Dr. Benza had arranged for AGH cardiothoracic surgeon Dr. Robert Moraca to receive the months-long training necessary to perform the procedure, which took Dr. Moraca to hospitals in San Diego, Canada and Alabama.
Jean was the first person to undergo this procedure at AGH, but she says Dr. Benza’s manner helped lessen her fears. “He understood this was scary, but he explained things so I could understand them — and told me, matter-of-factly, what they were going to do,” she says. “I really wanted to know, so I appreciated that. His and Dr. Moraca’s confidence really helped.”
Jean’s surgery required a bypass machine to produce total circulatory arrest. “You can’t have any blood going through the lungs because that’s where we were operating,” Dr. Benza explains. After her body and brain were chilled, lead surgeon Dr. Moraca opened up all the blood vessels in her lungs and carefully teased away the clots from the vessels. “Deciding what’s real tissue and abnormal tissue inside the vessels is one of the real challenges here,” explains Dr. Benza. “And if you make a mistake and puncture a blood vessel, that’s usually fatal.”
The positive results of Jean’s surgery were apparent immediately — the high pressure in her lungs dropped to normal, and her circulation responded in kind. “Although I was weak from the surgery, I remember sitting up and taking a breath and thinking, Wow, a real improvement!” Jean says. “I was only in the hospital a week, and back to normal quickly.”