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MAGEC Magnetic Growth Rod Surgery - First U.S. Surgery: Anthony Wainess

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  • MAGEC Magnetic Growth Rod Surgery - First U.S. Surgery: Anthony Wainess

    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)

  • #2
    Anthony Wainess - Part 2

    A few words about the initial surgery. This was Anthony’s first major surgery, so it was challenging and stressful for so many reasons. Anthony had three skilled surgeons working on him. It only took three hours to implant his two MAGEC rods. I know some MAGEC surgeries in England took twice as long, but those surgeries had some complications I believe. Anyway, those three hours seemed like an eternity to my wife and I. Of course, we were thrilled when Dr. Akbarnia announced the surgery was a success and showed us the amazing x-rays that made my son’s spine look straighter than I ever imagined given his curvature. However, seeing your child in recovery is still very, very difficult and emotional. Their face is flushed and puffy. They have tubes everywhere. You will feel so many emotions: concerns about their pain, excitement that everything went well, worries about their recovery process and tremendous relief that surgery is over. The first day or two after the surgery is a blur of activity. Nurses and doctors constantly checking on your child, getting acclimated to the hospital, nurses and staff, electronic machines making noises, etc., etc.

    After seeing his x-rays with the magnetic rods implanted, everyone started called my son “Bionic Anthony”. Indeed, he really surprised us on the morning after surgery when he told the nurse he wanted to stand up in a very serious tone. Of course, he was on a lot of pain medication, so we thought he was hallucinating. But, later that day he surprised us by standing up for a few minutes, but with a fair amount of pain.

    Bionic Anthony spirits were also lifted when we started watching some of the TV news reports on CBS and NBC about his “ground-breaking” surgery. Anthony’s room was right next to Tomas Loredo, the five year old boy who had MAGEC rods implanted later the same day. The two boys instantly bonded and their friendship helped both deal with the hospital experience. In fact, Tomas was able to leave the hospital a few days earlier than Anthony, even though he was much younger than Anthony. Unfortunately, Tomas is a “veteran” because he has undergone more than a half dozen major surgeries in his young life.

    Two days after surgery, Anthony was measured for a plastic brace. The brace company rushed the preparation and fitting of the brace so that it was ready the next day. Anthony was instructed that he must wear this brace for at least three months after the MAGEC surgery, except when he is sleeping. Most importantly, Anthony cannot bend, lift (more than a few pounds) or twist during these three months. And no contact sports for a year, at least.

    Our nurses taught us how to get Anthony out of bed safely. My recommendation to other parents is don’t be afraid to push the button to call the nurse for help because there are so many tubes, IV’s, catheter, and cords hooked up to your child immediately after surgery, that it requires a bit of practice and experience. The nurses will also roll your child from side to side every two hours. Plus, they will give additional medications and take vital signs frequently. Basically, this means no one gets much rest for the first few days. Additionally, your child will be extremely uncomfortable and possibly (probably) feel pain after surgery. I personally know that every grimace made by your child is instant pain transferred to the parent. In the U.S., patients (including kids) are given a button to push that delivers extra pain medication. The “pain” button can only be pushed once every twenty minutes. Parents are not allowed to push the button at any time. I hate this procedure, because it forces a child in pain to stay awake. Plus, Anthony sometimes awoke from a short nap in pain and it took awhile before the medication helped his pain. Please please please keep a log of the medications given to your child and how often they can be given. You need to monitor the medications because the nurses often receive instructions to administer drugs “as needed”. This can result in your child going for many hours without relief, unless it is requested. Especially when there is a changing of the guard, I mean, nurse. In the U.S., children are shown a piece of paper with different faces on it – ranging from happy to sad/crying. The child is asked to tell the nurse what kind of face he/she feels like. Some kids just don’t want to complain or admit they feel pain, so they give the nurse an inaccurate answer. I was constantly telling Anthony to fully express his condition / pain level because he always seemed to downplay his discomfort.

    Anthony experienced two complications after surgery. The first was constipation from the drugs that slow down your system. The doctors anticipate this and instruct the nurses to give liberal doses of stool softeners. As far as I am concerned, these stool softeners turn your child’s intestines into packed concrete. From my own experience in the hospital, I knew that Ducolax (an over the counter drug) was necessary to get Anthony’s intestines working again. So, I finally insisted that Ducolax be administered and it worked just as I predicted. The second complication was an extremely painful rash. Anthony was literally screaming in pain for several days which required even more pain medication. No one ever figured out what caused the rash – maybe an allergic reaction to tape or surgical solutions or ??? At first, the doctors just gave Anthony an allergy medication called Benadryl, but it did very little. At least 3 experts were called in to address the rash. Finally, the experts prescribed a drug called Kenalog. It worked very quickly to reduce the rash and pain. I highly recommend it for post-surgery rashes.

    Anthony has felt relatively no pain since leaving the hospital on May 15th. He has not even needed a Tylenol! This is absolutely incredible and a testament to his amazing team of surgeons: Dr. Akbarnia, Dr. Yaszay and Dr. Mundis, as well as Rady Children’s Hospital San Diego and of course, the amazing people at Ellipse Technology who developed the MAGEC rods.

    About a month or so after the MAGEC rods are implanted, the doctors want to start extending the rods. These non-surgical lengthenings are accomplished using a remote control magnetic device that is placed on the child’s back. The lengthening takes only 15 minutes. Most of the time is spent with the doctor locating the implanted magnets using a little plastic stick or wand with a super magnet at the end. Anthony had his first lengthening on June 3, 2013, less than 30 days after his surgery. He felt no pain, but he did feel a little movement / tingle during the procedure. The first lengthening increased each rod approximately 5 mm.

    Amazingly, Anthony returned to school full time the following day on June 4th. My wife and I stayed in his classroom the first couple of days to make sure everything was okay. Anthony’s third grade class, Mrs. Steppan, his teacher and Mrs. Kennedy, his principal, were so excited that he returned. Walking on his own without a walker or cane! They had been writing these amazing “get well” cards and posters before and after the surgery. Our Bionic Anthony was “back” to his usual active kid status. He wanted to play again. The big problem was keeping that energy under control.

    Wearing a brace for three months and not playing contact sports for at least a year sounds onerous at first, but every day gets easier. Kids just want to be kids and play. So, Anthony started to ignore the fact that he was wearing a brace after awhile and found a happy medium. Nearly two months after his surgery, Anthony still cannot put on his socks, but he is very active. He biggest complaint since leaving the hospital is that the brace and body sock make him itchy most of the time. He is counting the days until he can get back on his bicycle and run around and play tag. Anthony’s next lengthening is scheduled on August 19th.

    I am constantly amazed at Anthony’s resiliency. More than a few times, Anthony has told me that he doesn’t feel like he even had surgery. If I had all that hardware in my back, I might still be in a hospital bed popping pain pills every 4 hours.

    In about 2 years, the MAGEC rods will have been fully extended. At that point, Dr. Akbarnia will undoubtedly advise us that it is time to remove the MAGEC rods and fuse certain vertebrae in Anthony’s spine. I am dreading this day for Anthony because fusion is more invasive surgery. There are different methods used to fuse vertebrae that I have read about on this forum and other sources. But the bottom line is that Anthony’s spine will be fixed and no longer grow after fusion. At that point, Anthony will be about 11 years old and probably have reached a good height. After 11 - 12 years old, the doctors tell me that a child grows mostly in their lower torso. As an aside, I think some children might gain another inch or two if a second set of MAGEC rods were implanted. I will explore my theory more with Dr. Akbarnia in future appointments. Fusion surgery will again impact Anthony’s flexibility, especially in the first year. However, I have read about the many great things people can do with fused spines on this forum, so I have hope that Anthony can have an active life.

    I trust and pray that the FDA will ultimately do the right thing and approve the MAGEC surgery for all children in the U.S. If anyone has more questions about the MAGEC system or Anthony’s surgery / recovery, please feel free to contact me.

    Although I just joined this forum recently as a “member”, I have been reading NSF threads for several years and feel like I kind of know many of you. Your detailed, articulate posts, honest feedback and compassion are inspirational. I hope I can contribute in some small way with Anthony’s story.

    Steve Wainess

    Comment


    • #3
      I do have one question which I could probably find the answer to just by looking it up on the internet. But being a little lazy I'm going to ask you here.

      Since the MAGEC rods are controlled by magnetism, how will being around magnetism affect the rods? If it doesn't, why not?
      This is my primary concern about this technology.

      I also have scoliosis in my family (many members) and am preparing myself for it to rear its ugly head in my grandchildren. I have a grandson from my daughter who has very mild scoliosis. He already has an anterior rib hump at 4 years old. He had some x-rays done recently because he choked on a coin. I can't tell for sure if there is a small thoracic curve developing. He looks pretty straight, but with the scrutiny of someone with scoliosis, I think I "may" see something small developing. Also, my son, who had self-resolving JIS, married a woman with a significant scoliosis that had to be fused when she was 16 years old. Thus, the fear of the eventuality of grandkids from them having scoliosis is very real. This is why I have an interest in these childhood interventions.

      Thanks in advance.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #4
        Here are the radiographs. Wow Anthony got a very good initial correction!

        http://tribkswb.files.wordpress.com/...1-55-01-pm.png

        He looks like a wonderful child and you have a beautiful family. Life is so unfair, even to innocent children.

        Thank you posting your story. That will definitely help parents new to this game.

        ps. Did you get to meet Kiester, one of the inventors? He's an orthopedic surgeon in San Diego I believe. I was just wondering about how he seemed if you did and care to comment. Quotes from him are a bit strange to say the least.
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #5
          WOW! Thanks for posting those, Sharon. That is incredible improvement just with the initial installation. Look at how little Anthony's once crowded ribs are free. Poor little guy.

          This raises another question for me, though. Steve, you mentioned that they will extend Anthony's grow rods about 5mm every two months for two years, then plan on fusing, correct? That's a total of only 6cm of correction over the two years. Well, not even 6cm of correction because Anthony will continue to grow as well. Do the doctor's think that 6cm is sufficient for growth AND correction, or will the correction he has now be all that he gets?

          Thanks, again.
          Be happy!
          We don't know what tomorrow brings,
          but we are alive today!

          Comment


          • #6
            Originally posted by rohrer01 View Post
            This raises another question for me, though. Steve, you mentioned that they will extend Anthony's grow rods about 5mm every two months for two years, then plan on fusing, correct? That's a total of only 6cm of correction over the two years. Well, not even 6cm of correction because Anthony will continue to grow as well. Do the doctor's think that 6cm is sufficient for growth AND correction, or will the correction he has now be all that he gets?

            Thanks, again.
            Steve will know but I think I recall reading that's about what they can get as a maximum from growing rods before auto-fusion starts I think. I thought that maybe because these rods can be extended 6 times a year rather than twice as in other growing rods, that maybe the auto-fusion would not occur. And maybe it doesn't and that I am wrong about why they are only shooting for 12 cm.

            In re your other question, I suspect the magnets can only be activated by a very strong magnet in close proximity oriented in exactly the correct way. You don't run across that in normal life. That's my guess.
            Sharon, mother of identical twin girls with scoliosis

            No island of sanity.

            Question: What do you call alternative medicine that works?
            Answer: Medicine


            "We are all African."

            Comment


            • #7
              Magnet Boy

              Hi Rohrer01,

              My wife and I were very impressed that Ellipse Technology, the makers of the MAGEC magnetic rods actually had the co-inventor at Anthony's pre-op examination on May 6, 2013 to answer all of our questions. I believe his name was Scott. (Note to Sharon: We did not get a chance to meet Dr. Douglas Kiester, the other co-inventor. I'm not sure exactly how many co-inventors exist, but Scott was very informative. And thank you Sharon for your beautiful comments. Anthony is our walking sunshine!)

              In addition to Scott, Ed Roschak, the President of Ellipse Technology and many other officers of Ellipse attended the meeting. Scott explained that he was initially working on a magnetic device that was originally designed to be a magnetic gastric by-pass device that could be tightened or loosened remotely via magnets when another co-inventor (Dr. Kiester?) suggested that it might be used to help someone's daughter who has scoliosis.

              At some point in the meeting with Scott, Ellipse, Rady Children's Hospital, Dr. Akbarnia, and a few other people, someone made a comment about Anthony turning into "Magnet Boy". We were assured random magnets, x-rays, airport screenings, power poles, sunspots, asteroids, etc. have no impact on the MAGEC rods. However, I still tease Anthony from time to time with a super magnet and ask him if I can use him like a refrigerator to post messages on his back.

              The device used to remotely turn the magnetic screws in the MAGEC rod creates an extremely strong magnetic field controlled by a computer which somehow makes the screws turn. If the screws are advanced / extended too far, Dr. Akbarnia tells me that he can quite easily reverse the screws. All this takes place without any incisions! I am not privy to the actual technology that makes all of this possible, but its potential applications are endless.

              A few years ago, there was another experimental magnetic device called the "Phenix Rod" that could actually be extended daily by the parents using a home magnetic machine. I'm not sure what happened to the Phenix Rod, but I believe it eventually failed. The idea of parents having a strong magnet that can control the lengthening process is a little scary.

              The MAGEC rod has been "human" tested in England, New Zealand, Hong Kong and several other countries for about 4 years with brilliant results. Prior testing on animals was likewise promising. One thing I learned in law school many years ago is that you should never be the first to try anything labelled "experimental". After reading the many reports on MAGEC studies overseas, I was convinced somebody finally had done the magnetic rod correctly.

              Ellipse has also designed another product that allows doctors to help patients with uneven lower legs (due to chronic fractures or diseases) to lengthen or shorten the limb magnetically. I don't what else is going on in Ellipse's think tank, but they have some very creative inventors working for them.

              I sincerely hope your grandson is okay and that your future grandchildren are spared. The surgeons have always identified Anthony's scoliosis as "idiopathic". Based on my family's fight with scoliosis for three generations, I tend to believe that there is a genetic component to scoliosis. I have met with many orthopedic surgeons in the past 7 years. They all have many theories. One of them said that he believes many cases of scoliosis are the result of reactions to the polio vaccine. I have never seen anything to support that theory, but he was very firm in his opinion. Another surgeon said that it might be connected to the English / Irish heritage of my father. We may never know in our lifetimes, but in the meantime, I am thrilled that magnetic rods will help my son and may help children in the future (assuming the FDA moves forward with the pending approval).

              Best to you and your family,

              Steve

              Comment


              • #8
                Thank you, Steve, for that very enlightening information.

                I barely scratched the surface of magnetics in college physics. I think about the only thing I remember is the "rule of thumbs" to determine which way the flux current goes. It's amazing what they can do. I think I, as a parent, would still be a little leery. I don't know why. Maybe they use radiofrequencies in combination with the magnets so that BOTH have to be present at a particular setting? The odds of something like that occurring in nature would be tantamount to zero, as Sharon mentioned.

                Are you going to ask about new rods after the first two years are up? I ask this only because boys, especially, go through large growth spurts in their late teens. I have two grown sons in their 20's and they are still growing! One is 20 (married) and the other is 25. I do realize that "they" say that most of the later growth occurs in the long bones and not the spine. But there's got to be quite a bit of spine growth left in an 11 year old boy. It depends, too, on whether he is a late bloomer. I dated a guy in high school that never made it over 5'2". When I met up with him by chance in the grocery store years later I almost didn't recognize him. He was every bit 5' 10" to 6' tall!

                That's my concern with only giving these kids 6cm of extension over two years and that's it. But, either way, it beats having surgery every six months!
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • #9
                  Magnet Boy

                  Very good questions Rohrer01 and Sharon. I don't have complete answers.

                  First, the maximum adjustment on the MAGEC rods is only 4.8 CM or 1.9 inches! I wish it was 12 cm! At this point, I don't know if the adjustments every two months will be 5 mm or 4 mm. I was a little concerned when Dr. Akbarnia mentioned that the first adjustment would happen in less than a month and that it was 5 mm. If 5 mm adjustments are made every two months, that means the MAGEC rods will be "maxed out" by January or February of 2014 and that another surgery would be necessary. I was hoping that Anthony would have a longer break from surgery. In fact, I would love to prolong the treatment to maximize Anthony's growth if Dr. Akbarnia approves. Maybe even consider another MAGEC rod surgery before any final fusion takes place? Anthony will never be 6 feet tall or have a perfectly straight spine, but we are hoping that the MAGEC rods help straighten his spine sufficiently so that when fusion ultimately takes place, it will be easier for Dr. Akbarnia to correct Anthony's curvature. At the end of the day, we just want Anthony to be as healthy as possible. But for the corrections made by the MAGEC rod surgery, Dr. Akbarnia said Anthony's curvature was life threatening at the press conference on May 8th. A chill goes up my spine every time I think about it.

                  With regard to auto-fusion issues, it is my understanding that this has not been a problem in any of the MAGEC rod surgeries. All MAGEC rod patients are closely followed and consent to monitoring for ten years. Perhaps, auto-fusion issues are another reason why the doctors want to make adjustments every two months.

                  You have given me more questions for Anthony's next appointment with Dr. Akbarnia in August. Thank you.

                  Steve

                  Comment


                  • #10
                    Serial MAGEC Operations?

                    Hi Rohrer01,

                    My replies seem to keep crossing with your updated questions. So, let me try to answer fast. Although I practiced for many years as an attorney, my free time (other than spending time with Anthony) has always been working on cars. Every aspect of cars - electrical, mechanical, paint, etc. For many years, I was the technical chairman of a prominent car club in Southern California specializing in "Proper" British motor cars. I don't have an engineering degree, but I fancy myself as having more mechanical background than the average guy. I also dabble in radio controlled vehicles and even robotics. So, in my humble opinion, it would take extreme concentrated exposure to an intense magnetic field to somehow move the magnets in the MAGEC rods implanted in Anthony. I cannot envision a scenario in which Anthony could be exposed to something like that outside of Dr. Akbarnia's office. Having said this, I have lots of interesting electrical equipment around the house. Hopefully, nothing triggers Anthony's magnets!

                    I agree with you about delayed growth spurts. Perhaps, Anthony would benefit from another set of MAGEC rods in 2014. I don't want to expose him to unnecessary surgeries, so I look forward to Dr. Akbarnia's feedback on the subject. The other boy who received the MAGEC rods on the same day as Anthony is only 5 years old and has numerous medical problems besides his spine curvature. Ethically, Dr. Akbarnia cannot share with me his future plans for Tomas, but I anticipate that Tomas will have another set of MAGEC rods inserted when his MAGEC rods have reached their full extension. My wife is in touch with Tomas' mom and I plan to see if she can tell me what surgical plans, if any, have been mapped for Tomas. I will let everyone know when I get a firm answer.

                    Steve

                    Comment


                    • #11
                      Originally posted by Anthony's Dad View Post
                      With regard to auto-fusion issues, it is my understanding that this has not been a problem in any of the MAGEC rod surgeries. All MAGEC rod patients are closely followed and consent to monitoring for ten years. Perhaps, auto-fusion issues are another reason why the doctors want to make adjustments every two months.
                      Well, maybe the more frequent lengthenings do avoid auto-fusion. I read the company literature looking for that point and it was absent. I also looked for if they were claiming a lower rate of definitive fusions after the treatment because as I understand it, virtually all growing rod patients are fused after treatment. In fact the only claim I could find was avoidance of the numerous lengthening surgeries. So at that point, it wasn't obvious if they solved the other problems with growing rods or else they would have claimed it. There was a hot mess of mass confusion on this issue among a few frequent flyers in this sandbox. Threads were sacrificed on the altar of ignorance.

                      Maybe only very advanced cases are treated with growing rods (of any type) and so no amount of guided growth cannot avoid definitive fusion. Maybe eventually use in kids with smaller curves over longer periods of time will result in avoidance of definitive fusion. I hope something pans out for these kids because it is so unfair.
                      Sharon, mother of identical twin girls with scoliosis

                      No island of sanity.

                      Question: What do you call alternative medicine that works?
                      Answer: Medicine


                      "We are all African."

                      Comment


                      • #12
                        Steve,
                        Don't beat yourself up over Anthony having to have surgeries. NO parent in their right mind wants their kid to have "unnecessary" surgery! You definitely seem solidly grounded in your mental faculties. =) You, your wife, and the doctors will come up with what's best for your son in the long run.

                        Any curve over 100* is life threatening and I'm glad you were proactive enough to get him to the right doctors so he could participate in the compassionate trial here in the USA. Many parents, including myself, wouldn't even know where to begin. The computer age has really opened up a lot of channels for me if I should (hopefully not) ever be in your shoes with regard to my grandchildren. Your son's story is inspiring, but most of all your diligence in finding him the help he needed is inspiring. It encourages other parents to never give up even when it seems you are facing the impossible.

                        Thank you!
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • #13
                          Originally posted by Anthony's Dad View Post
                          I have met with many orthopedic surgeons in the past 7 years. They all have many theories. One of them said that he believes many cases of scoliosis are the result of reactions to the polio vaccine. I have never seen anything to support that theory, but he was very firm in his opinion.
                          This Orthopedic surgeon's hypothesis is probably based on the following study.

                          Experimental scoliosis in primates: a neurological cause.
                          A series of monkeys is presented where scoliosis developed incidentally during the routine virulence testing of live, attenuated, oral poliomyelitis vaccines by intraspinal injection.
                          I have no idea if that hypothesis is correct but at least it's theoretically sound and there is some direct evidence to support it.

                          The second hypothesis is preposterous.
                          Originally posted by Anthony's Dad View Post
                          Another surgeon said that it might be connected to the English / Irish heritage of my father.
                          Scoliosis isn't specific to children from the British Isles. It hits a few percent of children of every race all around the world.

                          Exhibit A)
                          Research for the prevalence of scoliosis (in Japan)

                          Exhibit B)
                          Scoliosis in China. A general review.

                          Exhibit C)
                          US mission to perform scoliosis surgery at Kingston Public Hospital in Jamaica

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                          • #14
                            Infantile Idiopathic Scolisis is said to be seen in more children of Northern European ancestry than in kids from anywhere else though. I don't know if there have been any formal studies done, but this belief is widespread amongst IIS surgeons and parents.

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                            • #15
                              Originally posted by tonibunny View Post
                              Infantile Idiopathic Scolisis is said to be seen in more children of Northern European ancestry than in kids from anywhere else though. I don't know if there have been any formal studies done, but this belief is widespread amongst IIS surgeons and parents.
                              Understanding Genetic Factors in Idiopathic Scoliosis, a Complex Disease of Childhood
                              Idiopathic scoliosis (AIS) is the most common pediatric spinal deformity, affecting ~3% of children worldwide. AIS significantly impacts national health in the U. S. alone, creating disfigurement and disability for over 10% of patients and costing billions of dollars annually for treatment. Despite many investigations, the underlying etiology of IS is poorly understood.
                              Adolescent idiopathic scoliosis hits pretty much everyone all around the world. I couldn't find a study link for infantile. But you might be right.

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