This is my first thread / post on NSF to discuss the medical journey of my 9 year old son, Anthony Wainess, and his battle with early onset scoliosis. On May 7, 2013, Anthony became the first child in the U.S. to have two MAGEC magnetic growth rods implanted on his spine. At the time of the surgery, Anthony’s curvature was 105 degrees. While England and other forward thinking countries have been experimenting with MAGEC rods for several years, more than 30 countries reported on Anthony’s game changing surgery in the U.S.
With this post, I want to discuss the story behind the newspaper articles, as well as bring everyone up to date on Anthony’s progress about 50 days after the surgery.
My original post was nearly 3 times longer than permitted by NSF, so I have edited this post tremendously. In case you haven’t read some of the reports about Anthony’s surgery or seen his dramatic before and after x-rays, please Google "Anthony Wainess".
My goal here is to exchange information and increase parent's awareness of an alternative on the horizon to standard growth rods that might save their children from undergoing needless surgeries.
I know the “orgin” of scoliosis is a hot topic on NSF threads. I don’t want to add fuel to that fire, but my family has been dealing with scoliosis problems for three generations. My late mother, sister and first cousin all had/have significant scoliosis curves, but never wore braces or received corrective surgery. My brother and I somehow escaped scoliosis. My brother’s children and sister’s children did not have scoliosis. Unfortunately, Anthony came along in 2004 and received the brunt of the family problem. He was diagnosed as having early onset scoliosis at 18 months. Anthony was never casted, but wore braces until his surgery last month.
Like all of you parents, I spent so much time and money trying to find the finest doctors and medical treatments for Anthony’s scoliosis. I also devoted incredible amounts of time learning about different treatments and surgical procedures. It was a daunting task. Regrettably, it was also depressing because every road seemed to lead to a path where Anthony would face multiple painful risky surgeries for most of his youth and teenage years. We saw all the experts at Children’s Hospitals in Los Angeles and Orange County, as well as Shriner’s Hospital. My wife and I constantly “debated” whether Anthony should undergo standard growth rod surgery immediately. Meanwhile, Anthony was enrolled in Tae Kwon Do classes, swimming therapy classes and seeing a chiropractor every week. Despite his curvature, he was very flexible and active.
My research was derailed for a while in 2008 when I underwent cancer surgery and subsequent clinical trials. Later, I went on permanent disability. At the time, I was the co-managing partner of a twenty attorney law firm in Los Angeles.
Finally, around 2010, after years of researching news reports and reviewing numerous blogs and forums set up to support scoliosis and spine surgery patients, I learned of a new type of magnetic growth rod cleverly called the “MAGEC” system that is capable of adjusting implants from outside the body using some kind of magnetic / electronic device. I also determined the novel procedure was being performed primarily in England by Dr. Noordeen. Additional “experiments” were also taking place in Hong Kong, New Zealand and several other countries.
The beauty of the magnetic growth rods is the fact that the patient is no longer subjected to anesthesia and the pain / risk of surgery every six months to lengthen standard growth rods. This device eliminated my wife’s basic objection to the growth rod surgery. I continued my research in 2011, but unfortunately, I ascertained that the magnetic growth rod procedure was not available in the United States – even on a clinical trial basis. Therefore, I started to explore the possibility of going overseas, so Anthony could have the MAGEC surgery performed. Of course, it would not be covered by U.S. insurance, so the price tag for the proposed surgery was extremely high. The financial aspect was compounded by the fact that the remote control lengthening of the magnetic rods takes place every two months approximately. So, Anthony would have to fly every two months overseas for a simple lengthening.
By April 2012, Anthony’s orthopedic specialist, Dr. Afshin Aminian x-rayed and examined Anthony and determined that his curvature had now reached approximately 95 degrees. Of course, Dr. Aminian recommended immediate surgery using standard growth rods. More family debates ensued. Dr. Aminian (perhaps out of frustration) referred us to his esteemed colleague, Dr. Akbarnia, in San Diego. Dr. Aminian was not certain if Dr. Akbarnia was even seeing patients anymore, however, Dr. Aminian said he would personally call Dr. Akbarnia and ask that he see Anthony as a favor. Additionally, Dr. Aminian suggested we might also want to meet another amazing surgeon in San Diego: Dr. Peter Newton.
May 2012 – Anthony is finally examined by Dr. Akbarnia. We are greatly impressed by Dr. Akbarnia’s knowledge and experience, especially the fact that he is working with Ellipse Technology, the company in Irvine, California that developed the MAGEC system. Unfortunately, Dr. Akbarnia’s hands were tied and he could not perform the MAGEC surgery in the U.S. because it was still not approved by the FDA.
I even contacted Ellipse directly in an effort to determine if they could give me any information (or even a hint) about potential clinical studies in the U.S. The people at Ellipse were incredibly sympathetic to Anthony’s plight, but unfortunately, no opportunities existed for surgery in the U.S.
In mid-2012, I found a highly respected orthopedic surgeon who agreed to perform the MAGEC surgery on Anthony in Europe. I decided that time had run out and regardless of cost or problems, I needed to get Anthony the surgery even if I had to liquidate every asset that I own and move to Europe. However, a problem arose with the proposed hospital in Europe, so the surgery had to be cancelled. Efforts to find an alternative location to perform the surgery did not succeed.
I subsequently contacted Dr. Noordeen in England at the end of 2012, and he graciously agreed to perform the surgery in England. However, the operation in England was significantly more expensive than the proposed European surgery, plus the expense of moving my entire family to London, England and difficulty of selling our home in a down real estate market in the U.S., as well as liquidating everything else became simply overwhelming.
On March 5, 2013, Anthony was examined by Dr. Peter Newton. Anthony’s curvature exceeded 100 degrees! Dr. Newton said that waiting was no longer an option and casting would not help. There were no other options except calling his nurse and scheduling traditional growth rod surgery.
Then, on the brink of desperation, our prayers were answered and a miracle occurred. Hours after Anthony’s examination by Dr. Newton, I received a call from Ellipse informing me that Dr. Akbarnia and Ellipse were making a special application to the FDA for “compassion use” exception in order to implant the MAGEC rods in Anthony. Nothing was guaranteed, of course, plus we still needed approval of Rady’s Children’s Hospital, but for the first time in years – we had hope that Anthony might be able to get MAGEC rods that would spare him the pain and problems that arise when you have surgery every six months until your spine has sufficiently grown.
We were obviously overjoyed when the FDA granted the compassion exception and Rady Children’s Hospital approved the procedure.
The surgery on May 7th could not have gone smoother. Dr. Akbarnia, assisted by two other surgeons, Dr. Yaszay and Dr. Mundis, implanted two MAGEC rods in Anthony in less than 3 hours. Anthony instantly grew 2 inches by reason of the straightening of his spine. His 105 degree curve improved dramatically. The before and after x-rays below speak volumes. If you Google "Anthony Wainess" images, you will see the x-rays. I was unable to compress the size of the x-rays to fit in this post.
A press conference was held at Rady Children’s Hospital San Diego on May 8, 2013, to announce the breakthrough surgeries. Dr. Akbarnia’s team, Ellipse Technology’s President, Rady Hospital’s representative, myself and Tomas Loredo’s mom were interviewed by dozens of TV and news reporters. I heard that the press coverage and TV reports extended to more than 30 countries. It was even reported on the big TV screen in New York City’s Times Square.
So, let me tell you my understanding about how the MAGEC rods work. Every patient is different, so if you are a parent of a prospective MAGEC patient, please talk to your doctor to confirm and discuss your child’s specific situation. MAGEC rods require two surgeries about two years apart. The first surgery will implant two MAGEC rods on either side of the child’s spine. Your doctors will determine which vertebrae will serve as anchor points to achieve maximum straightness. The MAGEC rods are attached to the vertebrae with special surgical screws and hooks that are very long. I believe Anthony has 4 screws securing each rod. The MAGEC rods are usually inserted by making two incisions, each about 4-5 inches long, along the spine. The first incision starts around the waistline. The second incision is high between the shoulder blades. Anthony’s incisions are nearly 50 days old now and the scabs mostly fell off a few weeks ago. There is only one tiny area about 1mm in diameter below the back of his neck that still has a scab. The doctors say that once the incision is completely healed, Anthony can take a bath (instead of a shower) and go in the swimming pool. (End of Part 1)
With this post, I want to discuss the story behind the newspaper articles, as well as bring everyone up to date on Anthony’s progress about 50 days after the surgery.
My original post was nearly 3 times longer than permitted by NSF, so I have edited this post tremendously. In case you haven’t read some of the reports about Anthony’s surgery or seen his dramatic before and after x-rays, please Google "Anthony Wainess".
My goal here is to exchange information and increase parent's awareness of an alternative on the horizon to standard growth rods that might save their children from undergoing needless surgeries.
I know the “orgin” of scoliosis is a hot topic on NSF threads. I don’t want to add fuel to that fire, but my family has been dealing with scoliosis problems for three generations. My late mother, sister and first cousin all had/have significant scoliosis curves, but never wore braces or received corrective surgery. My brother and I somehow escaped scoliosis. My brother’s children and sister’s children did not have scoliosis. Unfortunately, Anthony came along in 2004 and received the brunt of the family problem. He was diagnosed as having early onset scoliosis at 18 months. Anthony was never casted, but wore braces until his surgery last month.
Like all of you parents, I spent so much time and money trying to find the finest doctors and medical treatments for Anthony’s scoliosis. I also devoted incredible amounts of time learning about different treatments and surgical procedures. It was a daunting task. Regrettably, it was also depressing because every road seemed to lead to a path where Anthony would face multiple painful risky surgeries for most of his youth and teenage years. We saw all the experts at Children’s Hospitals in Los Angeles and Orange County, as well as Shriner’s Hospital. My wife and I constantly “debated” whether Anthony should undergo standard growth rod surgery immediately. Meanwhile, Anthony was enrolled in Tae Kwon Do classes, swimming therapy classes and seeing a chiropractor every week. Despite his curvature, he was very flexible and active.
My research was derailed for a while in 2008 when I underwent cancer surgery and subsequent clinical trials. Later, I went on permanent disability. At the time, I was the co-managing partner of a twenty attorney law firm in Los Angeles.
Finally, around 2010, after years of researching news reports and reviewing numerous blogs and forums set up to support scoliosis and spine surgery patients, I learned of a new type of magnetic growth rod cleverly called the “MAGEC” system that is capable of adjusting implants from outside the body using some kind of magnetic / electronic device. I also determined the novel procedure was being performed primarily in England by Dr. Noordeen. Additional “experiments” were also taking place in Hong Kong, New Zealand and several other countries.
The beauty of the magnetic growth rods is the fact that the patient is no longer subjected to anesthesia and the pain / risk of surgery every six months to lengthen standard growth rods. This device eliminated my wife’s basic objection to the growth rod surgery. I continued my research in 2011, but unfortunately, I ascertained that the magnetic growth rod procedure was not available in the United States – even on a clinical trial basis. Therefore, I started to explore the possibility of going overseas, so Anthony could have the MAGEC surgery performed. Of course, it would not be covered by U.S. insurance, so the price tag for the proposed surgery was extremely high. The financial aspect was compounded by the fact that the remote control lengthening of the magnetic rods takes place every two months approximately. So, Anthony would have to fly every two months overseas for a simple lengthening.
By April 2012, Anthony’s orthopedic specialist, Dr. Afshin Aminian x-rayed and examined Anthony and determined that his curvature had now reached approximately 95 degrees. Of course, Dr. Aminian recommended immediate surgery using standard growth rods. More family debates ensued. Dr. Aminian (perhaps out of frustration) referred us to his esteemed colleague, Dr. Akbarnia, in San Diego. Dr. Aminian was not certain if Dr. Akbarnia was even seeing patients anymore, however, Dr. Aminian said he would personally call Dr. Akbarnia and ask that he see Anthony as a favor. Additionally, Dr. Aminian suggested we might also want to meet another amazing surgeon in San Diego: Dr. Peter Newton.
May 2012 – Anthony is finally examined by Dr. Akbarnia. We are greatly impressed by Dr. Akbarnia’s knowledge and experience, especially the fact that he is working with Ellipse Technology, the company in Irvine, California that developed the MAGEC system. Unfortunately, Dr. Akbarnia’s hands were tied and he could not perform the MAGEC surgery in the U.S. because it was still not approved by the FDA.
I even contacted Ellipse directly in an effort to determine if they could give me any information (or even a hint) about potential clinical studies in the U.S. The people at Ellipse were incredibly sympathetic to Anthony’s plight, but unfortunately, no opportunities existed for surgery in the U.S.
In mid-2012, I found a highly respected orthopedic surgeon who agreed to perform the MAGEC surgery on Anthony in Europe. I decided that time had run out and regardless of cost or problems, I needed to get Anthony the surgery even if I had to liquidate every asset that I own and move to Europe. However, a problem arose with the proposed hospital in Europe, so the surgery had to be cancelled. Efforts to find an alternative location to perform the surgery did not succeed.
I subsequently contacted Dr. Noordeen in England at the end of 2012, and he graciously agreed to perform the surgery in England. However, the operation in England was significantly more expensive than the proposed European surgery, plus the expense of moving my entire family to London, England and difficulty of selling our home in a down real estate market in the U.S., as well as liquidating everything else became simply overwhelming.
On March 5, 2013, Anthony was examined by Dr. Peter Newton. Anthony’s curvature exceeded 100 degrees! Dr. Newton said that waiting was no longer an option and casting would not help. There were no other options except calling his nurse and scheduling traditional growth rod surgery.
Then, on the brink of desperation, our prayers were answered and a miracle occurred. Hours after Anthony’s examination by Dr. Newton, I received a call from Ellipse informing me that Dr. Akbarnia and Ellipse were making a special application to the FDA for “compassion use” exception in order to implant the MAGEC rods in Anthony. Nothing was guaranteed, of course, plus we still needed approval of Rady’s Children’s Hospital, but for the first time in years – we had hope that Anthony might be able to get MAGEC rods that would spare him the pain and problems that arise when you have surgery every six months until your spine has sufficiently grown.
We were obviously overjoyed when the FDA granted the compassion exception and Rady Children’s Hospital approved the procedure.
The surgery on May 7th could not have gone smoother. Dr. Akbarnia, assisted by two other surgeons, Dr. Yaszay and Dr. Mundis, implanted two MAGEC rods in Anthony in less than 3 hours. Anthony instantly grew 2 inches by reason of the straightening of his spine. His 105 degree curve improved dramatically. The before and after x-rays below speak volumes. If you Google "Anthony Wainess" images, you will see the x-rays. I was unable to compress the size of the x-rays to fit in this post.
A press conference was held at Rady Children’s Hospital San Diego on May 8, 2013, to announce the breakthrough surgeries. Dr. Akbarnia’s team, Ellipse Technology’s President, Rady Hospital’s representative, myself and Tomas Loredo’s mom were interviewed by dozens of TV and news reporters. I heard that the press coverage and TV reports extended to more than 30 countries. It was even reported on the big TV screen in New York City’s Times Square.
So, let me tell you my understanding about how the MAGEC rods work. Every patient is different, so if you are a parent of a prospective MAGEC patient, please talk to your doctor to confirm and discuss your child’s specific situation. MAGEC rods require two surgeries about two years apart. The first surgery will implant two MAGEC rods on either side of the child’s spine. Your doctors will determine which vertebrae will serve as anchor points to achieve maximum straightness. The MAGEC rods are attached to the vertebrae with special surgical screws and hooks that are very long. I believe Anthony has 4 screws securing each rod. The MAGEC rods are usually inserted by making two incisions, each about 4-5 inches long, along the spine. The first incision starts around the waistline. The second incision is high between the shoulder blades. Anthony’s incisions are nearly 50 days old now and the scabs mostly fell off a few weeks ago. There is only one tiny area about 1mm in diameter below the back of his neck that still has a scab. The doctors say that once the incision is completely healed, Anthony can take a bath (instead of a shower) and go in the swimming pool. (End of Part 1)
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