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.
July 5th, 2012
Wasn’t fate cruel enough to 8-year-old Grace Doran, who was struck with T-cell lymphoblastic lymphoma? Yet despite a successful two-year battle to cure the disease with chemotherapy, the young girl couldn’t return to the activities she loved.
An avid competitive swimmer and softball player, Grace, of Cherry Hill, New Jersey, bore her cancer treatment sustained by the love of her sports. “The whole time she was sick, she wanted her sports,” says her mother Eileen. So much so, that Grace kept a picture of herself at swim championships, and pointing to the picture told her mother, “I’m working at this so I can go back to there.”
Imagine her chagrin then when after her recovery, she began to swim, but couldn’t even make it for 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. Hence Grace’s difficulty performing the activities she loves.
And the medical community’s response to phrenic nerve damaged patients is like a broken record to Dr. Kaufman and his staff: Learn to live with it. Shouldn’t she just be grateful to have her life back? Maybe this is the best you can get. These were the words that Grace and her family heard.
But her mother, a veteran of going to war for her children (in addition to Grace, there is her twin brother, and two other siblings), felt, “We’ve come too far to give up now.”
And then fate was good to Grace: her mother found Dr. Matthew Kaufman on the Internet.
Since 2007, Dr. Kaufman has been performing phrenic nerve surgeries, and is, as far as can be determined, the only one in the world to do these procedures. Of the nearly 45 phrenic nerve procedures he has done, Grace Moran is Dr. Kaufman’s youngest patient.
One month following surgery with Dr. Kaufman to remove the scar tissue and adhesions to her phrenic nerve, Grace took the field at softball practice. Two months later, Grace, now 11 years old, is playing games, and in June, 2012, she swam a 50-meter breast stroke and back stroke time trials. June and July were highlighted by swim meets every weekend.
“We were walking around terrified all the time. But for the first time in three years, we feel she’s going to be okay. Really okay,” says a relieved Eileen Doran.
“Dr. Kaufman is my hero because he absolutely saved my child. The cancer doctors saved her life, but he gave her back her life.”
May 3rd, 2012
Last November, 2011, New Jersey reconstructive surgeon Dr. Matthew Kaufman of the Institute for Advanced Reconstruction, performed his pioneering phrenic nerve surgery on Don Bird of Australia. Bird, who in his never-give-up search to improve his medical situation, had found Dr. Kaufman through the Internet–sent an update (featured below) to Heather O’Neill , Dr. Kaufman’s practice manager. Bird, like nearly all of the patients at The Plastic Surgery Center and The Institute for Advanced Reconstruction, developed a close and friendly relationship with all of the staff. Click here to read more on Bird’s procedure and patient stories.
Dear Heather, Hope everyone is well in your family and at clinic. Can you please say a big hello to everyone and I have some news that you can pass on for me please. Have just had Lung Function tests today at Austin Hospital and compared with tests done at same place in December of 2010. I have attached these results and I am sure that Dr Kaufman will be happy to see a marked difference in the results. I also have had other improvements. Prior to Surgery I was only able to sleep on my right side ( which was damaged side), I now can sleep on both sides and my back as well. I have also noticed my ability to talk without getting a husky voice due to low air has gone and now I can talk the legs off a table!!! I have been getting more active as weeks pass and have only had one short stay in Hospital due to Pneumonia and I recovered from that much quicker than I used to. I am starting new program of Rehabilitation and hope to achieve a higher standard of fitness than before. I will keep the updates coming and hope to hear from you soon. I hope you can tell that I was very happy today and pleased with results. PS Also pass on that Dr Kaufman”s scar is very neat and muscle is flattening out as he said it would.
Cheers Don Bird
Dr. Kaufman shares his reaction to Bird’s email:
“All of us at the Institute for Advanced Reconstruction are excited to learn that Don has been experiencing early clinical benefits from the nerve transplant surgery performed in November 2011. Although we expect this regenerative process to take at least one year, these early signs of improvement increase the chances that he will continue to improve over this time period. We will be following his progress very closely to completion and are happy that he has already detected some recovery in his respiratory function.”