January 31st, 2013
We recently heard a glowing and gratifying report from the Loitz family (1/13). Tristin’s latest story of phrenic nerve surgery with Dr. Matthew Kaufman at The Institute for Advanced Reconstruction is on our website Pediatric Phrenic Nerve Procedures—Children Find Renewed Life with Groundbreaking Surgery. Below is an excerpt from an email from Tristin’s mom, Tracy.
When we returned home (from surgery) in October, we were told to let Tristin heal for at least 2 months. We did just that; however, it was driving Tristin crazy. He wanted to do everything–run, exercise, play ball, go to gym class with his friends at school and even take out the trash and shovel snow.
Now that the 2 months have gone by with Tristin waiting to lead a normal life after more than 4 years of being sedentary, tired all the time and with a lack of oxygen, he was ready to start a life, a new beginning.
I started working at The Alaska Club (GYM) which has access to cardio, weights, basketball, tennis, rock climbing, swimming, racquetball and group fitness classes. Tristin has been able to exercise and play basketball for long periods of time. We got with a personal trainer at the Alaska Club due to his weight that he had gained from being sedentary for so long. We wanted to be able to track his progress. Since our first visit with the personal trainer 3 weeks ago Tristin has lost 3 pounds, 10 pounds of body fat and gained 3 pounds of muscle.
We have also added a treadmill in our house. He is on it everyday. He started out at 10 minutes a day and now he is up to 30 minutes a day and at an incline.
It is so amazing the improvement Tristin has made not only physically, but mentally as well. His spirits are higher. He has more self-confidence and is interacting a lot more with his friends.
We were so very fortunate to have found Dr. Kaufman and his team. Now Tristin can live a longer and healthier life.
January 11th, 2013
Dr. Matthew Kaufman of The Institute for Advanced Reconstruction is Only Known Surgeon to Treat This Condition
Young people are benefiting from a groundbreaking procedure to solve a medical problem that for the most part rules their lives. Of the nearly 75 phrenic nerve surgeries performed since 2007 by Dr. Matthew Kaufman of The Institute for Advanced Reconstruction, the only known physician to conduct this surgery, several young patients are testimony to the potentially life-changing benefits of this procedure.
The phrenic nerve controls function of the diaphragm muscle – the primary muscle involved in breathing. Contraction of the diaphragm muscle permits expansion of the chest cavity and inhalation of air into the lungs. Injury to the phrenic nerve causes everything from severe shortness of breath to frequent bouts of pneumonia.
Twelve-year-old Tristin Loitz of Fairbanks, Alaska had Klippel-Feil Syndrome, a devastating disease characterized by fusion of any of the cervical vertebrae, potentially causing severe damage to major organs. Tristin was banned from all contact sports—primarily his beloved football– due to two missing discs in his neck. Tristin, with a medical school student’s grasp, describes his ordeal. “Klippel-Feil affects one in 42,000 kids. Doctors went through an MRI looking for bone cancer or scoliosis.” The multiple trips to doctors over the years led Tristin to ask his mother, “Am I going to die?”
It turned out, however, that aside from the missing cervical discs, Tristin’s only remaining problem was the diaphragm paralysis caused by his paralyzed phrenic nerve. After four years of desperation at a variety of doctors as far from their home as Seattle, the family ultimately heard the same line that has become universal with Dr. Kaufman’s phrenic nerve patients. “You’re just going to have to live with it.”
It was difficult enough for 10-year-old Grace Doran of Cherry Hill, New Jersey to endure treatment for lymphoma. But when she attempted to resume the sports she loved, she couldn’t even swim two laps in a row. Pale and out of breath, Grace was devastated. Because her lymphoma was mostly in her chest, including the largest tumor (10 centimeters), physicians believe this caused the destruction of her phrenic nerve, which resulted in diaphragm paralysis and the ensuing chronic shortness of breath, sleep disturbances, and lower energy levels. Like Tristin, Grace and her family were told: Learn to live with it.
Dr. Kaufman, who has operated on patients as young as 10 and as old as 70+ and from around the U.S. and Australia, has a 70-80% percent success rate, which is consistent with other nerve surgeries that have been around for many years.
Both Tristin and Grace found Dr. Kaufman, and underwent phrenic nerve surgery. As a result, their lives have radically improved. Tristin was operated on at Jersey Shore Medical Center in October, 2012. Prior to surgery, he would turn blue from lack of oxygen merely trying to run a few feet. Three months following surgery, he exercises vigorously almost daily, doing 20-30 minutes per session of cardio. He also goes to classes like any other student: repeatedly walking the sets of stairs in his school, which he could not do prior to his surgery. In addition, “He is more high-spirited,” reports his mother, Tracy. “He feels so much better being able to exercise (and play basketball),” she says.
Grace Doran had her surgery in June, 2012. Eight months later, and both a swim and softball season successfully completed, she is up to 5 ½ days of school, no naps, and her sports, and she needs far less medication. Before her surgery, she could barely function for a 3-hour day, and needed significant medication and 12-14 hours per night of sleep.
Children present different physical and psychological responses to surgery and healing. Their inherent resilience and rates of healing make them good candidates for phrenic nerve surgery.
“In our two youngest patients with diaphragm paralysis we have observed and demonstrated tremendous improvements in respiratory function after phrenic nerve surgery. Our publications in the medical literature reporting the successful outcomes of our first several adult patients will soon be superseded by one that is much more comprehensive and includes the results of both our adult and pediatric cases.”
Just a year ago, on her birthday, Grace Doran was in the hospital, yet again. This time, on October 30, 2012, when she turned 12, she got her much-desired gift: a cell phone. Tristin Loitz recently got a gift as well: a home treadmill. Most children dislike exercise for its own sake. Not Tristin. He asks her mother every day to go on that treadmill.
October 10th, 2012
(Shrewsbury, NJ—October 11, 2012) — Imagine a 12-year-old boy’s greatest joy is to take deep breaths for the first time in nearly half his life. That’s the case with Tristin Loitz, from Fairbanks, Alaska, who made the trip to New Jersey for groundbreaking phrenic nerve surgery with Dr. Matthew Kaufman of The Institute for Advanced Reconstruction in Shrewsbury.
For Kaufman, reconstructive plastic specialist and the only known surgeon to perform phrenic nerve surgery, young Tristin represented roughly the 65th such surgery since undertaking this procedure in 2007.
The phrenic nerve controls function of the diaphragm muscle – the primary muscle involved in breathing. Contraction of the diaphragm muscle permits expansion of the chest cavity and inhalation of air into the lungs. In Tristin’s case, the paralysis had caused the right side of his diaphragm to essentially be pushed up to the top of his chest, preventing the lung from expanding with inspiration of breath.
The long medical saga for Tristin and his family began four years ago, when the avid football player had trouble breathing. As is often the case with Dr. Kaufman’s patients, initially asthma was automatically diagnosed. When the problem did not resolve, it was determined Tristin had Klippel-Feil Syndrome, a devastating disease characterized by fusion of any of the cervical vertebrae, potentially causing severe damage to major organs. Tristin was banned from all contact sports—primarily his beloved football– due to two missing discs in his neck. Tristin, with a medical school student’s grasp, describes his ordeal. “Klippel-Feil affects one in 42,000 kids. Doctors went through an MRI looking for bone cancer or scoliosis.” The trips to doctors led Tristin to ask his mother, “Am I going to die?”
It turned out however, that aside from the missing cervical discs, Tristin’s only remaining problem was the diaphragm paralysis caused by his paralyzed phrenic nerve. After four years of desperation at a variety of doctors as far from their home as Seattle, the family ultimately heard the same line that has become universal with Dr. Kaufman’s phrenic nerve patients. “You’re just going to have to live with it.”
That wasn’t good enough for Tristin’s mom, Tracy Loitz, and his dad Roger. In April 2012, Tracy went on the Internet and found Dr. Kaufman. In October, Tristin, his mom and dad and 8-year-old sister Hanna spent a month in New Jersey for his procedure, including homework done on the road and sightseeing in New York City.
According to Dr. Kaufman, who sees a relationship between Tristin’s case of Klippel-Feil Syndrome and his phrenic nerve damage, the fused cervical vertebrae were associated with abnormal development and function of the phrenic nerve in the neck, ultimately predisposing it to injury.
A week after surgery, the family was ready to return home. Tristin awaits respiratory therapy, and beginning to exercise and lose weight from being forced to be sedentary. Remarkably, his father, who had often watched Tristin breathe during sleep, was able for the first time following the surgery to see the right side of his son’s chest rise and fall as his son slept. As is customary in this surgery, the full result evolves over about a year’s time, with healing of the phrenic nerve and strengthening of the diaphragm muscle.
That will happen when Tristin now takes his place in gym class or on the soccer field or basketball court. “Emotionally, I felt broken-hearted not being able to run with my friends,” he says. “Now, I feel great. Hopefully, I can run with my friends longer.” And his father says, “I look forward to watching him run without the blue-green tinge I’d see on his neck due to lack of oxygen.”
Tracy, who used to feel sick going to the doctors with her son, and was devastated after every diagnosis, immediately felt entirely different with Dr. Kaufman and the staff at The Institute for Advanced Reconstruction. “We’ve had the most wonderful experience, and from the beginning, I felt the utmost confidence. Everyone has been so comforting. To have an answer is very calming. And this proved there is always a possibility to make things better.”
When told during his post-surgical exam with Dr. Kaufman that the scar from his surgery would ultimately heal, Tristin, his comic skills honed over years of dealing with medical crisis, responded tongue in cheek, “I don’t want it to fade; it’s manly.”
Patients have come from around the U.S. and as far away as Australia to be operated on by Dr. Matthew Kaufman for phrenic nerve injuries. They have ranged in age from 11 to the early 70s with a success rate of 70% to 80%. To read more about phrenic nerve procedures with Dr. Matthew Kaufman, log onto http://www.
September 4th, 2012
Dr. Matthew Kaufman, pictured above, of the Center for Treatment of Paralysis and Reconstructive Nerve Surgery at Jersey Shore University Medical Center and The Institute for Advanced Reconstruction, is at the European Respiratory Society’s (ERS) annual congress, taking place on September 1st-5th in Vienna, Austria. The European Respiratory Society (ERS) is a broad-based professional organization, with some 10,000 members in over 100 countries, covering basic science and clinical medicine.
Dr. Kaufman’s presented his abstract, entitled “The role of nerve transplantation in the management of symptomatic diaphragm paralysis,” on Monday, September 3rd to an interested group of professionals. In addition, among the thousands of participants in the Congress, there has been strong interest in Dr. Kaufman’s work on the topic, specifically findings in his CHEST journal article.
Dr. Kaufman, whose pioneering work in surgical solutions for diaphragm paralysis draws patients from around the world, has performed over 45 phrenic nerve procedures since 2007. As far as can be determined, Dr. Kaufman is the only one in the world to do these procedures.
Follow us on Twitter for more info on Dr. Kaufman and the Vienna trip!
July 23rd, 2012
Don Bird of Australia, a phrenic nerve patient who underwent surgery with Dr. Matthew Kaufman in early November, 2011, sends an 8-month update of his remarkable progress. Bird was Dr. Kaufman’s most difficult such surgery to date.
Updates from patient Don Bird:
We are in our Winter period now and it is a time for me normally when I would have been in and out of the hospital. With some small adjustments, I have been able to attend all my son’s bike races including a recent trip into the mountains. I can easily watch one of Oakli’s Netball games and Remi’s dancing classes. I have been very active in my garage making bike repairs and building an exercise bike for my father-in-law and Rylan. We have recently completed painting Rylan’s room and will complete painting throughout our house during school term breaks and I feel I will be getting stronger and stronger as time passes. I have been out in our city and seeing friends and they say, “You are looking well and not grey.” When you are ill, you don’t see it as much until you look back at photos and say to yourself, “Gee, did I look like that?”
Whistling may not seem like much to anyone else, but I used to whistle while listening to music, working, walking and even just sitting for over 35 years. Unfortunately, with my condition causing very low air capacity, I hadn’t been able to. One day, about three months after my operation, I was driving and listening to music and started whistling like I used to. With the greater capacity for air into my lungs, it has changed how I feel in some surprising ways. It may sound strange, but prior to surgery, my blood felt like it was cold all the time. Maybe the increase in oxygen in the system and increased activity has brought about change. I haven’t started working yet, but both Kylie and I are looking forward to getting through this winter and staying well for a long period of time. I then hope to gain employment.
I cannot speak more highly of Dr. Kaufman, Heather O’Neill and his staff. His personal confidence, skills, talents and bedside manner put him at the top of our 100 surgeons in New Jersey list by far. I know if left untreated, this illness would have slowly but surely taken away my life. I will always remember him as ”The man who saved my life.” Our time in your country was something we will hold in our hearts forever.
The Diaphragm–The Key to Being Human
Don Bird is likely correct when he attributes his renewed ability to whistle to his surgery with Dr. Kaufman. Here is a portion of a scientific article emphasizing the role of the diaphragm, which the authors call “an organ which ideally defines the mammal.”
“The diaphragm is the only organ which only and all mammals have and without which no mammals can live….Abdominal breathing mode maximizes the diaphragmatic motion using abdominal muscles, and control precisely exhaled air velocity. Controlled exhaled airflow generates sophisticated vocalization, singing, and finally the language.”
“In general, an ideal definition of a group is given by an attribute which is possessed by only and all members of the group and without which no members can exist. Is there any such organ in the mammalian body? Yes, it is the diaphragm.”
The Diaphragm: a Hidden but Essential Organ for the Mammal and the Human
Hiroko Kitaoka1 and Koji Chihara2
Adv Exp Med Biol. 2010;669:167-71.