Healthy News for Healthy Nation

f shows like House M.D. or ER have taught us anything, it’s that gift-wrapped medical mysteries with happy endings appeal to the public — regardless of the story’s reliance on fact or “real” science. Step aside Hollywood, the following are a few exciting and rare surgeries. Unlike their made-for-TV spin-offs, however, these rare surgeries are real.

5 rare surgeries

1- Full face transplant

For 24 years, 30-year-old Frenchman Pascal Coler lived in silent agony on account of a genetic condition (neurofibromatosis) that turned him into a modern-day Elephant Man. The ridicule that his disfigured face drew in the streets became so severe that it forced him to live as a recluse and as a prisoner to his condition. Thanks to the courage to perform rare surgeries like face transplants, Coler no longer has to live in society’s shadows.

After 16 hours of surgery in March 2008, Mr. Coler emerged with new lips, cheeks, a nose, a mouth, and a smile. The remarkable procedure — undertaken at Henri-Mondor Hospital in Creteil, France — was hailed as the first full face transplant.

“At first we were quite frightened to do the transplant,” said Dr. Laurent Lantieri, head of plastic surgery at Henri-Mondor. “We didn’t know how the patient would tolerate the fact to have a new face.” The result, however, was a tremendous success. The transformation is simply incredible and Coler said that “The operation has revolutionized my life. I can live as a normal human being for the first time.”

How rare: Coler’s full face transplant was the first of its kind.

2- Six-way kidney transplant

What do doctors do if they have a patient in need of a kidney, a friend of the patient who is willing to donate, and incompatible tissue types? Welcome to modern medicine’s answer to musical chairs: the six-way kidney swap.

In April 2008, nine surgical teams at Johns Hopkins Hospital performed the world’s first six-way, simultaneous and “domino” kidney transplants. Five of the six patients requiring transplant had willing donors who unfortunately didn’t match their tissue type, but did match that of another patient’s. An independent sixth donor was thrown into the mix, resulting in the now famous six-way swap. Simultaneity was required in order to prevent donors from backing out once their friend or loved one received a kidney.

Johns Hopkins Hospital has carried out a number of simultaneous transplants over the past three years, but this was the first six-way.

How rare: As rare surgeries often are, this was the first of its kind.

3- No-incision appendectomy

Appendectomies used to result in a week-long hospital stay and a large scar. Now, due to experimenting with rare surgeries, lucky appendectomy patients can expect to have their appendix removed through — brace yourselves — the vagina or anus. In March 2008, surgeons at the University of California, San Diego (UCSD), removed 24-year-old Diana Schlamadinger’s appendix through her vagina. Despite the horrific images this conjures, the surgery offers immense benefits in both recovery time and in pain reduction.

We may have fibbed a little when we called this a no-incision procedure as it require a small incision in the inner wall of the vagina (if you have one) and one more just below the belly button to allow the insertion of a camera to guide the operation. Within two days after the surgery, Diana (a student at UCSD) was recovering with almost no pain. “I feel kind of like I did too many sit-ups,” she said.

How rare: This surgery was the first of perhaps many.

4- Nerve transplant

After her son, Nick, had his hand paralyzed in a serious car crash, like any loving mother, Frankie Anderson-Harris wanted to help. On November 17, 2005, Frankie donated nerves from both her arms and legs to give her son’s hand new life. Her nerves were used to rejoin those that were severed in her son’s forearms. After the extraction, Frankie was left with numb spots on her feet and elbows; she was told that these sensations would dissipate over time. The surgery was completed successfully, but, as with any transplant surgery, there was fear that the host would reject the donor tissue. Nick was told he’d have to take immunosuppressive drugs for at least a year following the operation, after which point his body hopefully would have accepted the new nerves. “Sometimes you feel very, very helpless and it’s nice to be able to do something,” Nick’s mother said. “I was glad to be able to do it.”

How rare: This rare surgery was one of only a dozen ever attempted at the time.

5- Robotic brain tumor removal

In May 2008, 21-year-old Paige Nickason had a tumor robotically removed from her brain. Using remote controls and an image screen, doctors at Foothills Medical Centre in Calgary guided a two-armed robot — known as NeuroArm — through a nine-hour procedure to remove the young woman’s tumor.

“Paige’s brain surgery represents a technical achievement in the use of image-guided robotic technology to remove a relatively complex brain tumor,” said Dr. Garnette Sutherland, professor of neurosurgery at the University of Calgary and Paige’s surgeon. Interestingly, Dr. Sutherland attributed, at least partially, humankind’s development of manipulative robotic surgery techniques to popular video games. “We would all agree that our young children who have become immersed in video games represent the future generation of surgeons,” he said.

The robotic arm that was used in Paige’s surgery was built in collaboration with engineers from MacDonald, Dettwiler and Associates, known for creating the International Space Station’s Canadarm and Canadarm2.

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Video

When Chad and Keri McCartney say their infant daughter, Macie Hope, is born again, they aren’t referring to religion — the month-old miracle baby really was born twice.

The first “birth” was about six months into Keri McCartney’s pregnancy, when surgeons at Texas Children’s Hospital took the tiny fetus from Keri’s womb to remove a tumor that would have killed Macie before she was born.

The second time was on May 3, when the McCartneys welcomed their surgically repaired — and perfectly healthy — baby girl into the world.

The happy couple talked exclusively to TODAY’s Ann Curry on Friday from the hospital, where they were joined by Dr. Darrell Cass, the fetal surgeon who led the team that performed a surgery that has been successfully completed fewer than 20 times around the world. In Macie’s case, he said, “We were very, very fortunate. It really turned out perfectly.”

The McCartneys’ story began in Keri’s 23rd week of pregnancy, when the couple took their entire family to their obstetrician’s office to discover the sex of the baby Keri was carrying.

“We had our whole family,” Chad McCartney told Curry. “Our four kids had piled into the van, and we headed to our routine ultrasound to find out what the sex of the baby was going to be. That was the big discussion on the way up, so there was lots of excitement.”

A deadly revelation
Everyone went into the ultrasound room, eager to see the image of the fetus displayed on the screen. “All of a sudden the ultrasound tech had a very concerned look on her face,” Chad said. “She rushed our kids out of the room and then informed us there was a large mass on our baby.”

The ultrasound image showed what looked like a balloon growing out of Macie’s tailbone — except that it was full of blood vessels and was as big as the fetus itself. The tumor was noncancerous … but still deadly.

“This tumor was gigantic,” Cass said. “It was the size of a grapefruit.”

The McCartneys’ obstetrician had never seen such a tumor in all her years of practice. After some research, she discovered that Texas Children’s Hospital in Houston — six hours away from the family’s Laredo home — was one of only three hospitals in the world that specialized in such conditions.

“This is incredibly rare. It’s about one in 40,000 births,” Cass said. “Many times, these tumors

TODAY Baby Macie’s ultrasound showed the tumor.

can grow and remain small and they don’t really affect the fetus very significantly. In Macie’s instance, this tumor grew incredibly rapidly … and basically it was stealing the blood that her body needed to grow. She would have died if nothing had been done.”

A fitting name
Keri and Chad went home with the desperate prognosis and decided they needed to name their infant right then.

“We both made a decision that we have a name for her, because we had been told that there was less than a 10 percent chance that she was going to make it,” Chad McCartney said, fighting back tears as he told the story. “We wanted to pick a name that would be appropriate, so we named her Macie Hope — because that was all we felt we had.”

They went to Houston for the surgery, which Cass described, with a surgeon’s understatement, as “tricky.”

“It required that Mrs. McCartney went under a very, very deep anesthesia, about seven times deeper than the average operation,” he said. “That’s necessary in order to have the uterus very, very relaxed.”

He and two other surgeons opened Keri’s abdomen and brought her uterus entirely outside her body. “We had to find an area of the uterus that we could open safely so that we didn’t disturb the placenta,” he explained.

When they found such a place, they opened the relaxed womb and extracted about 80 percent of Macie Hope’s body — which weighed no more than a quarter of a pound — leaving just the head and upper body in the womb. Exposing the fetus to the air carried the danger that she would go into cardiac arrest, and the surgeons worked quickly to remove the tumor and return Macie to the safety of the womb.

That part of the four-hour procedure took about 20 minutes. The surgeons then had to carefully close up the uterus so that it would be watertight, to keep the amniotic fluid from leaking out.

“Then we had to hope that the pregnancy was going to last,” Cass added.

Born again
That hope was also answered. Macie Hope didn’t make it the entire nine months, but, Cass said, “The pregnancy lasted another 10 weeks, which allowed Macie to recover from this tumor that had been killing her.”

On May 3, Macie Hope was born again, this time to stay. She and her mother have remained at Texas Medical Center since as they both fully recover from the miracle surgery. Macie still has a large scar on her backside, which surgeons say can be repaired when she gets older.

Keri and Chad McCartney were expecting to take their miracle baby home on Saturday, and they couldn’t have been happier.

“We are doing great,” Keri McCartney told Curry. “I am so excited to think that we’re leaving tomorrow.”

She cradled Macie Hope in her arms. The infant, sporting a thick head of hair, slept through it all, prompting her mother to say, “Obviously she is completely at peace and content with it all.”

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Japanese Police Tadamasa Goto received a life-saving liver transplant at UCLA Medical Center. Goto is one of Japan’s most powerful gang bosses, which experts describe as vindictive and at times brutal.

A Japanese mob boss and another man said to have gang ties each donated $100,000 after their transplants. The university said the gifts had absolutely no bearing on the surgeries.

A powerful Japanese gang boss who received a liver transplant at UCLA Medical Center donated $100,000 to the Westwood hospital shortly after the surgery, The Times has learned.

A plaque dated November 2001 at the entryway to a seventh-floor surgery office reads, “In grateful recognition of the Goto Research Fund established through the generosity of Mr. Tadamasa Goto.”

• Four Japanese gang figures got liver transplants at UCLA
• Video: Organs for Japanese mob figures

• Japan’s flamboyant crime syndicates

UCLA confirmed the amount of the donation Friday. Law enforcement sources say Goto, 65, is the leader of the ruthless Goto-gumi gang. He received a transplant at UCLA in July 2001, The Times reported Thursday. He made his donation less than three months later.

UCLA also acknowledged that it received a separate $100,000 donation from another man who figured in Thursday’s story. He donated in 2002, the year of his transplant.

The man was identified by a law enforcement official as one of four Japanese men now barred from entering the United States because of their suspected gang affiliations, criminal records, or both. All four received new livers at UCLA between 2000 and 2004, The Times reported.

The Times is not naming the second donor because it has not been able to reach him or his lawyer about the law enforcement assertion. Japanese police do not generally make public information about gang affiliations.

UCLA spokeswoman Dale Tate said the university had “no reason to question” the source of the money given by Goto or the other donor. Both donations were deposited into the Department of Surgery’s Discretionary Fund, she said. When asked if the money had any bearing on the men’s transplants, Tate said: “Absolutely not.”

In a written statement, Tate said the surgery discretionary fund was used to support research and education for the liver transplant program.

UCLA’s actions drew attention Friday from a leading U.S. senator and mixed reaction from doctors and transplant professionals.

The surgeries took place at a time of persistent shortages of donor livers. In the year of Goto’s transplant, 186 patients on the list for livers died while waiting for the operation in the greater Los Angeles region.

U.S. transplant rules allow hospitals to provide organs to patients with criminal histories and to a limited number of foreign patients, but both topics have been controversial. News that UCLA had provided livers to foreigners barred from the country generated considerable comment Friday.

Sen. Charles Grassley (R-Iowa), who has considerable influence on federal health policy and an interest in transplant oversight going back several years, said he was “worried about the credibility of the transplant system” and would demand additional information from the university.

If the transplant system “doesn’t have credibility, we’re not going to have people donate organs,” said Grassley, the senior Republican on the Senate Finance Committee, which oversees federal hospital funds. “I think I have to get to the bottom of things.”

Some said they worried the surgeries would discourage people from donating organs; others said that there are so few transplants going to either foreigners or criminals that it should have no effect.

All four of the transplants were performed by Dr. Ronald W. Busuttil, executive chairman of UCLA’s surgery department, according to a person familiar with the cases. Goto’s lawyer, Yoshiyuki Maki, previously confirmed that his client received a transplant at UCLA and that Busuttil subsequently examined Goto in Japan. Neither Maki nor Goto could be reached for further comment Friday.

Goto had been prohibited from entering this country before his transplant, but the FBI agreed to help him get a visa in exchange for information on potentially illegal activities in the United States by Japanese gangs, commonly known as yakuza, a former FBI official said. Goto provided little information of use, he said.

There is no evidence that UCLA or Busuttil knew at the time of the surgeries that any of the patients had a criminal record or ties to the yakuza. Both said in statements earlier this week that they do not make moral judgments about patients and treat them based on their medical need.

Busuttil, a world-renowned surgeon and co-editor of a leading text on liver transplantation, said in his statement that he considers it “part of my responsibility and obligation as a physician” to ensure that his patients receive proper care whether in the U.S. or abroad.

Busuttil declined to comment Friday through his attorney, citing federal patient-privacy laws.

It is not uncommon for transplant recipients or other grateful patients to donate money to hospitals after receiving life-saving medical care. Businessman Robert A. Day and his wife Kelly, for instance, donated $30 million last year to the UCLA Department of Surgery to express their gratitude for his liver transplant two years earlier.

Even so, Arthur Caplan, a bioethicist at the University of Pennsylvania, said hospitals have a responsibility to inquire about the source of their gifts.

“It starts to defy credulity that you’re not going to be curious about who these people are, if only to ask them for more money down the road,” he said. “Any development officer who didn’t follow up a $100,000 gift with a check of who this guy is and who his friends are would be an ex-development officer.”

Wealthy foreigners, he added, are attractive to transplant programs because not only do they pay the full cost for their procedures, but they often make gifts of gratitude later.

Dr. Joseph Tector, chief of transplant at the Clarian Transplant Institute at Indiana University, defended UCLA’s actions. The occupations of his patients are not relevant, he said.

“As doctors, you are not a member of the clergy to ascertain someone’s worthiness,” he said. “You don’t want to discriminate. These calls don’t come so much into questions with other procedures. But with livers, the water is muddied because not everyone can get transplants. There aren’t enough livers. ”

But Dr. David Mulligan, a liver transplant surgeon at the Mayo Clinic in Phoenix, took issue with UCLA’s statement that it does not make moral decisions when it adds patients to its transplant waiting list. He said transplant professionals make such decisions every day.

“By saying that we don’t impose any kind of a moral judgment on people is not entirely complete,” he said, “because I think that every transplant center has members of the [selection] committee who are social workers and financial aid advisors and psychiatrists who are intensely involved in the estimation of every potential recipient and their ability to progress with a full and long-standing recovery.”

“I don’t think that transplant centers can turn a blind eye to patients’ social histories and their backgrounds,” he said, adding that his center has run criminal background checks on some American patients about whom it has questions.

Transplant rules give hospitals and doctors the final say on which patients get added to their waiting lists, and they have the discretion to refuse patients with unhealthy lifestyles that could compromise the transplant’s success. Patients may be refused on other grounds as well, including an inability to pay.

One L.A. doctor said he believes that UCLA’s reputation as a first-class transplant center will suffer from the news of the four transplants.

“It’s going to have a real negative effect,” said Dr. David Boska, an internist in Brentwood who says he has referred 10 patients to UCLA over the last decade. “Their interest is to make sure people know they have a first-rate program. This isn’t going to help.”

Boska, who said he is a friend of Busuttil, added: “I have lost faith in the system, not the program,” he said.

“You have a brother who dies because he doesn’t have $500,000 to spend on a liver. That’s a terrible thing to think about. Then you learn that we have foreign criminals who come in and get livers. That’s not good.

“But it’s terrible thing that we don’t have any guidelines. We should have them. We have all these people dying in Los Angeles.”

charles.ornstein@latimes.com

john.glionna@latimes.com

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The question most often asked by longtime readers and acquaintances I haven’t seen for a while is, “How are your knees?”

They recall the columns I wrote in February 2005, three months after having both knees replaced, in which I described the unexpected, prolonged and poorly treated postoperative pain and the surprising length of time before I could resume normal activities.

Some readers may also recall the “one-year later” column relating my return to long walks and ice skating, and the ability to stand for hours without pain. I’m happy to report further improvements.

I’m dancing again, and in March 2007, I hiked in Tasmania and walked all over Sydney, up and down hundreds of steps, for many hours each day with no knee or leg pain. This past March, I toured Vietnam by bicycle, riding as much as 35 miles a day over hot, dusty roads without pain.

But the truth is that artificial knees, while certainly an improvement over severely arthritic ones like mine, are not like normal, healthy knees. There are limitations inherent in the devices and surgical techniques that most surgeons use. Although a vast majority of patients ultimately fare really well, in some cases the device fails or there are lasting injuries to internal tissues.

Studies of many hundreds of patients with total knee replacements show potential problems surgeons may fail to mention in advance. “What we as health professionals tell patients preoperatively isn’t always what they need to know,” Ann F. Jacobson of the Kent State University College of Nursing said in an interview.

Managing Expectations

Dr. Jacobson and her colleagues studied the preoperative and short-term postoperative experiences of 27 patients undergoing total knee replacements. Writing in the May issue of The American Journal of Nursing, they concluded, “Patients need to be better educated and supported before and after total knee replacement surgery.”

The researchers found that many people delayed the surgery for months, even years, “despite increasing pain and limitation” and difficulty maintaining their independence. Postoperatively, the main issues for patients were pain, difficulty with the activities of daily living, and the time it took to recover their independence.

“Patients really struggled with having to be a bother to others,” Dr. Jacobson said. “They need help beforehand in learning to let go temporarily of their independence and accept the fact that they’ll need help after the surgery.”

Perhaps the study’s most important finding is that patients are often told that they will be at a certain level of recovery in a certain length of time, which often leads to unrealistic expectations, Dr. Jacobson said, adding, “Everyone heals differently, and there’s no one prediction that can apply to all patients.”

For example, I had been told that I would be driving in four weeks when I still wasn’t ready to drive in eight. And I needed potent pain medication for four months to fulfill the demands of my professional and personal life.

What about the long-term results, years after the surgery? These are some facts that patients might like to know:

¶Kneeling is problematic. It can hurt to put weight on metal knees, even on a cushion, making activities like gardening a challenge.

¶Falling on an artificial knee, even banging it on furniture or a briefcase, can hurt a lot more and longer than you might expect.

¶Going down steep steps can be difficult and may require a sideways, one-foot approach. A normal knee bends at an angle of about 145 degrees, but replaced knees often achieve only 120 degrees, if that. Sitting on the floor cross-legged may be impossible.

¶Despite the passage of time and many months of physical therapy, there can be residual discomfort. I “feel” my knees on every rotation of the bike pedals, though the sensation is not what I would call pain and not enough to stop me from riding.

¶Most artificial knees are metal and set off the security alarm at airports, requiring a personal scan with a wand. This may be moot when new body scanners are in all airports.

¶Some patients require a surgical revision within two years of a replacement because of technical problems like instability or poor alignment of the new joint.

As one surgeon reported in 2005, 52 percent of knee replacement patients experienced functional limits, versus 22 percent among other people their age. Those limits included problems in kneeling, squatting, moving laterally, turning and cutting, carrying loads, stretching, leg strengthening, sex, playing tennis, dancing and gardening.

In a British study of 4,677 total replacements 10 years after surgery, 80 percent of the replacements had met patients’ expectations. Still, 30 percent of patients had a problem, 12 percent needed a revision within the decade, 22 percent had constant or regular pain, and 13 percent had severe pain.

In a study in the United States more than six months after surgery, just 35 percent of patients were able to do all they wanted to and only 13 percent had no restrictions on activities. In another American study, a third of patients were dissatisfied with their operation 6 to 12 months later. As one surgeon, Dr. Pieter H.J. Bullens, put it, “It appears that surgeons are more satisfied than patients after total knee replacement.”

New Designs

Some orthopedic surgeons are using new equipment and techniques that can improve the success of knee replacements and minimize the risk of complications.

One new design, the Triathlon knee, results in quicker recovery and return to function, according to surgeons who have used it.

Other surgeons use computers to help them properly place and align the artificial joint. Still others, like Dr. Peter M. Bonutti, who runs an orthopedic clinic in Effingham, Ill., and is an associate clinical professor at the University of Arkansas, have adopted a less invasive technique. It uses smaller surgical instruments and creates a smaller incision, reduces trauma to soft tissues and avoids moving the patella, or kneecap, during the operation.

Among 24 patients who had both knees replaced using the new technique, Dr. Bonutti reported that there was an early advantage of less pain, much less need for narcotics and quicker return to function, even for patients who were seriously overweight or out of shape. One older man said he went dancing the day he was discharged from the hospital and has been dancing ever since.

In a follow-up study two or more years later of 166 patients ages 41 to 94, including 25 with double knee replacements, 97 percent were functionally excellent, Dr. Bonutti reported in 2005. Six knees needed minor manipulations under anesthesia, and five patients required reoperations, which he said occurred “early in our learning curve.”

My own bottom line? My new knees are a significant improvement over what I had before. I’m not at all sorry I had the surgery, and I’m glad I did not wait until I could not walk unassisted.

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