Practice News

Paralyzed football player Rob Marrero was recently featured in the Times News for his impending Phrenic Nerve Surgery at The Institute for Advanced Reconstruction.  Marrero, who suffered a broken neck while playing football, paralyzing him from the waist down, will undergo surgery with Dr. Matthew Kaufman on March 16th.  Read more about his story here.

On Sunday, March 25th, The Panther Valley Breaker Boys of the Greater Eastern Football Association, will host a benefit for Rob Marerro. Marerro, who was paralyzed last year in a semi-pro football game, will  be undergoing surgery with Dr. Matthew Kaufman of the Institute for Advanced Reconstruction.

Paralyzed Football Player to Undergo Phrenic Nerve Surgery with Dr. Matthew Kaufman

(Lansford, PA–March 1, 2012) Carrie Marrero, Robert Marrero’s wife, says her husband “always loved football.” And she did too. Rob was expressing that love playing in a semi-pro game in Pennsylvania when the unthinkable happened. He took a hit that would forever change his life, and the life of his family.

Carrie, the mother of the couple’s two children, a boy age 11 and a girl age 2, explains: I was sitting in the car with the kids to avoid the rain. One of Rob’s teammates tapped on my window. “Rob is down and he’s asking for you. He can’t feel his legs.”

Initially, Carrie, who knows her football from growing up watching the sport, says, “I thought it was just a stinger, common in football; you get hit and go numb for a few minutes. Rob had that before.” This time, she knew it was different, “I could tell by the look on his face.”

Still, she held out hope, until she made it to the hospital where Rob was in the ICU. That’s when she was told her husband had a broken neck in three places, and that he was paralyzed from the neck down.

That was on May 7, 2011, and since that day, “There is nothing about life that hasn’t changed,” she summarizes.

According to the Spinal Cord Injury Information Pages, approximately 11,000 new spinal cord injuries occur each year, and 52 percent of them are considered paraplegic, like Rob. Among the 250,000 Americans with spinal cord injuries, 82 percent of them are male, and the average age of a spinal cord injured person is 31. That’s exactly Rob Marrero’s age.

It was an event in the ICU that eventually led Carrie to find Dr. Matthew Kaufman of The Institute for Advanced Reconstruction. The medical staff was adamantly trying to get Rob to cough, to keep his lungs clear. They told him if he couldn’t cough, they would have to put him on a ventilator and that if they did, “we don’t know if we can get you off.” Unfortunately, his attempts were not sufficient.

It was during rehabilitation in Philadelphia that Rob’s phrenic nerve was tested, and the results were not good. “Our hearts were broken,” says Carrie, who cried yet another river of tears. As in so many cases with Dr. Kaufman’s patients, the Marrero’s were told there was nothing that could be done.

Says Carrie, “Because I love my husband terribly and didn’t accept that diagnosis, if there was anything that could be done, I was going to find it. I researched my butt off.”

Nine months after his accident, on March 16th, Dr. Kaufman will operate on Rob phrenic nerve at the Center for Treatment of Paralysis & Reconstructive Nerve Surgery at the Jersey Shore University Medical Center, with the goal to make him eventually breathe independently of the respirator.

The couple, from Lansford, Pennsylvania, met 13 years ago. Rob, who had grown up in foster care, and Carrie, who has only her mother living nearby, are pretty much on their own. They have gotten minimal help, but are grateful to Rob’s employer prior to the accident, Gordon Food Service in Pottsville, PA, who moved them into a new, one floor home in only two hours.

Carrie, Rob’s full-time caretaker, was well-trained by the rehab facility, and is a diligent researcher. “I wanted to learn everything I could,” she says.

But how does a parent ever learn how to make a son, who is struggling with the feeling his dad has been taken from him, understand the kind of thing that has happened to his father?

Dr. Kaufman shares an article on diaphragm paralysis and phrenic nerve treatment

In my experience with cases of diaphragm paralysis (caused by injury to the phrenic nerve) there are unfortunately many people unable to find and receive treatment. This is due to the relative rarity of the condition, and the lack of comfort on the part of many pulmonary and neurology specialists. Furthermore, there is often a mis-diagnosis of their condition, or even worse, a belief that diaphragm paralysis does not cause severe dysfunction and therefore does not require treatment.

Under these circumstances many people take matters into their own hands, and begin searching the Internet. We often see patients who have done extensive research into their condition, and generally have more knowledge than most of the physicians they have seen previously.

This blog post from a former patient elaborates on the problem of phrenic nerve injury, and illustrates the need to get the word out on this topic. While I am gratified at being titled the “one surgeon in the world who could help me” by the blog’s author, Steve Crozier, what I appreciate even more is any effort to let people know that there is possibly light at the end of a tunnel for those who suffer from diaphragm paralysis.

Read the article here:

Matthew R, Kaufman MD, FACS

Phrenic Nerve Patient Heather Stutzman with Dr. Matthew Kaufman of The Institute for Advanced Reconstruction at the Plastic Surgery Center

Dr. Matthew Kaufman of The Institute for Advanced Reconstruction in Shrewsbury, NJ celebrated his 40^th surgery for diaphragm paralysis—this one on his youngest patient to date, 25-year-old Heather Stutzman of Ravenna, Ohio. Kaufman, who is the only known surgeon to perform this surgery, conducted the procedure at the Jersey Shore Medical Center on September 30, 2011.

The phrenic nerve is a large nerve in the chest that controls the diaphragm, which is integral to breathing. Dr. Kaufman either corrects or transplants the nerve in order to restore function, a surgery, which he estimates is successful in 70-80 percent of his patients. While the causes of phrenic nerve injury may vary from accidents to injury during surgery for other conditions, in Stutzman’s case, it appears that radioactive iodine treatment for a thyroid condition likely caused her problem.

When Stutzman arrived for the procedure, she had been in despair. Not only had she been forced to quit the job working with the disabled that she truly loved, she faced the continuing risk of pneumonia and other medical problems, and suffered the discomfort and embarrassment of wearing a breathing device (oxygen tank). Also, she was so short of breath, she feared she could never have children.

Stutzman, who had been hospitalized with several bouts of pneumonia, was forced for the past year to carry the oxygen tank. As for so many of Dr. Kaufman’s patients, Stutzman’s diagnosis of phrenic nerve damage was a long time coming. Then, she was told by various doctors that there was nothing that could be done for that damaged nerve.

That’s when she went onto the Internet, and like many of his patients, found Dr. Kaufman. “I just wasn’t giving up,” said Stutzman. “I’m too young, and I’ve got my whole life ahead of me.” Her family and friends held a fundraiser spaghetti dinner and raised $7,000 for her expenses.

Following the surgery, Stutzman woke up and for the first time could take a deep breath, without struggling. By the second day, she went shopping in a nearby mall, her oxygen tank now a relic of the past. Denied bowling, dancing and her other activities, Stutzman will now happily begin a physical rehabilitation program to recondition her diaphragm muscle.

Stutzman’s mother, Michelle, and Heather’s boyfriend of nine years, Sean, accompanied her to New Jersey. The day following her surgery, with tears of joy in her eyes, Stutzman said to Dr. Kaufman, “I think I can be a mom.”

Her message, “If you’re told there is nothing that can be done, don’t give up. Dr. Kaufman saved my life.”

Dr. Matthew Kaufman is an award-winning cosmetic and reconstructive plastic surgeon, board certified in both Plastic Surgery and Otolaryngology-Head and Neck Surgery, and he is a Fellow of the American College of Surgeons (FACS). Dr. Kaufman embarked on his surgical training at one of the nation’s top training programs for Otolaryngology – Head and Neck Surgery at The Mount Sinai Hospital in Manhattan. He continued his training in Plastic and Reconstructive Surgery at the prestigious UCLA Medical Center in Los Angeles. Among his nerve surgery expertise which he performs together with his partners at the Institute for Advanced Reconstruction in Shrewsbury, NJ, Dr. Kaufman  is the only known surgeon to perform specialized phrenic nerve surgery. As of  October, 2011, Australia will be his furthest patient; 25 is the youngest he has operated on for phrenic nerve problems, and early 70s the oldest.

Q: How much of your practice is devoted to phrenic nerve surgery?

Approximately forty percent and growing. Each case requires a lot of time. In addition to the actual procedure, there is extensive pre-surgery preparation since most of the patients are from out of town. There’s a tremendous amount of time that goes into preparing each one. To fly across the country, or from someplace else in the world, and have a unique surgery is overall quite complicated.

Q: How common is phrenic nerve injury and what are its causes?

It’s probably more common than most people think, but hard to know. For example, what percentage of those with this problem is finding us at The Institute for Advanced Reconstruction?

I think there are some standard causes. If you break it down into broad categories you have a surgical injury (i.e. damage to the nerve while being operated on for other causes), an anesthetic injury (e.g. inadvertent damage by a needle passed into the neck), a manipulation injury (e.g. chiropractic), or some type of trauma (such as a fall from a horse, a car accident, or even a freak twisting the wrong way).

Q: What are the various factors among those requiring this procedure?

Age is a big factor for recovery; young patients regenerate better than older ones. Among our patients, the 25-40-year-olds do much better than the 50-70-year-olds in terms of recovery.

Two-thirds to three-four of the patients are men. Men have more injuries in general—so they undergo more surgery, and chiropractic, and more likely to get injured from it. Secondly, men are usually bigger and heavier—so if the neck and (big, heavy) arm twist, there is potentially more damage.

Q: How long have you been doing these surgeries, and do you consider 40 a landmark number of procedures?

I think that 40 is a lot for any procedure that’s never been done. I’ve been doing these surgeries since 2007, with the majority of them in the last year and a half. I specialized in phrenic nerve problems by accident. Our website was continually attracting patients with various rare nerve problems. I was challenged to figure out if I could do something for those with phrenic nerve problems requiring surgery.

It falls within my specialties—head and neck, and plastic surgery. The phrenic nerve is not commonly dealt with, unless it is neck or chest surgery, so thoracic or otolaryngology surgeons will encounter the phrenic nerve—but basically just to try to stay away from it. Until now, no one has attempted to actually get to the phrenic nerve—unless they inadvertently harm it– to do something positive with it.

I see the procedures I’ve done are just the tip of the iceberg. I still think the majority of the medical community that takes care of phrenic nerve injury patients has no idea yet, so the goal is to get the word out.

Q: How do you intend to spread the word of your work?

After our recent article in the CHEST Journal* and a well-received seminar in Hawaii**, I hope to expand my “doctor to doctor” outreach so that the medical community can become more familiar and comfortable with our treatment approach. It can be difficult to reach physicians, but now we are getting to more of them.

Q: How is your success rate with phrenic nerve surgery?

I’ve had a 70-80% percent success rate, which is consistent with other nerve surgeries that have been around for years.  No one has 100 percent success. We don’t know enough about the nervous system to be able to surgically achieve that kind of success rate. While we’ve had a remarkable number of positive life-changing results with phrenic nerve cases, we’ve had patients who’ve not gotten better, and those we are waiting on over time, and we don’t know what their ultimate success will be. It can take a long time.

I always want to make procedures better. You always aim for 100 percent success; obviously, no one gets that. That being said, full function (of the phrenic nerve) is the goal I hope for. But if someone gets even 50 percent improvement, his or her life is going to be better.

Over time, I’ve learned a tremendous amount.  I have a better understanding of how the nerve functions, and how it gets damaged. So with each case, the success rates are going to get higher.

Q: How do you determine your success rate?

Other than the patient telling you they feel better, there are really only several tests you can do. One would be a study of the nerves, but no one wants to come back and get needles stuck into them for this purpose; another is an x-ray to look for motion in the diaphragm, and the third is breathing tests–pulmonary function tests–which don’t always coordinate with patients’ symptoms.  Pulmonary rehab is also an important part of the recuperative process that can help improve outcomes.

Q: How have you been impacted by the psychological or emotional aspect of doing this procedure over time?

I’m more in tune with the emotional aspect, since previously I never fully realized the implications of this condition in someone’s life, and quality of life. Most physicians still believe phrenic nerve injury is a relatively minor problem and that most people can live with, and that they don’t necessarily need to be treated for it. But my patients have taught me otherwise. That’s what we’re trying to teach the medical community.

Q: What can the patient do to help his/her odds?

If patients have this surgery they have to exercise the muscle (diaphragm). There are two things that are damaged: the nerve and the muscle. We’re only treating the nerve. I can’t make the muscle better. The muscle has to rebuild itself by exercise, usually through a pulmonary rehabilitation program.

Q: Is every case different both physically and, psychologically?

Yes, each case is different. It’s never cookie-cutter. It’s not like gallbladder surgery. It keeps me on my toes. We always have a standard game plan going into surgery, but I never completely know what I’m going to find until I go in– for example, if a person will need an actual nerve transplant– or what the outcome is going to be. It’s hard to prepare patients; that’s why I tell them all scenarios, and proceed with cautious optimism. We also turn away a lot of people. Just last week I turned a man away. Although he is very symptomatic, he had inconsistent results on tests we require. His tests show motion in his diaphragm, so I’m not going to take a person with a functioning diaphragm into surgery. I’ve probably turned away as many patients as I’ve operated on.

Q: Do you get ‘performance anxiety’ before doing these surgeries?

I wouldn’t say anxiety, but you get your “game face” on; you get into the zone. You have to plan, think, prepare. One of my mentors said, you have to do three things for surgery: study it, know what you’re going to do; envision the entire process in your head; finally, realize that process.

*Reinnervation of the Paralyzed Diaphragm: Application of Nerve Surgery Techniques Following Unilateral Phrenic Nerve Injury