Scoliosis affects six million Americans and there is no cure. For more serious cases, patients may require surgery to fuse the spine. The surgical materials doctors use are generally not a problem for patients, but a new solution for an unexpected complication helped save one boys life.
Daniel Stephen's parents call him their miracle. Doctors said he wouldn't live past the first night.
“He was not pink like a typical newborn baby who takes that gasp,” said Dawn Stephens, Daniel's mother.
Daniel had major health problems, including early onset scoliosis. His spine was curved into his ribcage, squashing his lungs.
Surgeons implanted a VEPTR, or a vertical, expanding, prosthetic titanium rib, which doesn't usually cause any problems.
“He was scratching his head, his chest, he had belly pain,” Jonathan Phillips, M.D., Pediatric Orthopedic Surgeon at Arnold Palmer Hospital for Children in Orlando, told Ivanhoe.
Turns out, Daniel is allergic to mostly all metals used to treat scoliosis. So Dr. Phillips had an idea: to trick Daniel's immune system they removed the titanium rods and masked the metal by spraying it with carbon. Daniel's symptoms disappeared.
That's why the teen says he calls his doctor his hero.
“He's fought for Daniel, he's thought way outside the box, it's inspiring and it gives us hope, hope for another day,” Dawn Stephens told Ivanhoe.
Meanwhile, one of Daniel's biggest wishes…
“To reach five feet,” Daniel said, “so I can drive go-carts.”
Daniel has been allergy-free for the past four years. Doctor Phillip's carbon-coated rods research was recently published in Spine Deformity, The Official Journal of The Scoliosis Research Society.
Contributors to this news report include: Cyndy McGrath, Supervising Producer; Katie Coronado, Field Producer; Kim Coley, News Assistant; Jamie Koczan, Videographer/Editor.
METAL ALLERGIES: The most common types of metal found in implants are chromium, nickel, cobalt, titanium and molybdenum; sometimes a prosthetic joint will contain one or more of these metal types. Nickel is the most common metal allergy, with up to 17 percent of women and 3 percent of men having it. In some people, the metal in the implant causes a reaction in the immune system when it comes in contact with body fluids. When blood circulates with the trace amounts of metal and reaches the skin, it causes a skin rash, called dermatitis; other symptoms include hives, blisters, and swelling of the skin tissue. The worst of this reaction usually occurs near the implant site. For patients with a titanium allergy, symptoms can range from a skin rash to pain and fatigue. So far, a blood test called the MELISA (memory lymphocyte immunostimulation assay) test is the only scientifically-proven way to diagnose a titanium allergy and its severity. There is also a blood test developed at National Jewish Health in Denver that can diagnose nickel allergies. Both tests see if a person's white blood cells react to the metal.
CARBON-COATING: Jonathan Phillips, M.D. Pediatric Orthopedic Surgeon at Arnold Palmer Hospital in Orlando, had been working with his young scoliosis patient, Daniel Stephens, for about a decade, trying to figure out how to work around an allergy to the metal implants keeping his spine straight. Through a combination of discussions with engineers from NASA and Synthesis, makers of the original VEPTR rods, Dr. Phillips learned that he could plasma-spray the titanium rods with carbon. Phillips told Ivanhoe, “carbon is an extremely inert substance and is very, very kind to the body.” Plasma spraying is the process of spraying molten/heat-softened material onto a surface to provide a coating. The material in powder form, in this case, carbon, is injected into an extremely high temperature plasma flame. This accelerates it to a high velocity impacting the desired surface and then cools to form a coating.(Sources: http://www.spine-deformity.org/article/S2212-134X(13)00131-7/abstract,http://www.gordonengland.co.uk/ps.htm)
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Jonathan Phillips, M.D., Pediatric Orthopedic Surgeon at Arnold Palmer Hospital for Children in Orlando, talks about modifying titanium back rods with carbon to help a child stand taller.
Interview conducted by Ivanhoe Broadcast News in June 2014.
If you could start by telling us a little bit about Daniel's story in a summary.
Dr. Phillips: Absolutely. I've known Daniel more than a decade now. I think I first met him when he was about 3 or 4 years old and came to me, the family moved to this part of the world and at that time he already had a very significant spinal curvature, a really bad scoliosis. The big question at that point was how we were going to treat it. Usually in very little kids we try to avoid surgery, but occasionally when the scoliosis is very bad, we have to start doing surgical procedures when these children are 4 or 5 years old. That's what ended up being the case with Daniel. We tried bracing and that was futile. We couldn't get that to work, so we eventually adopted a surgical method of treating the spinal curvature. The thing we were most concerned about was not just the gravity, the magnitude of his spinal curvature, but in addition, the fact that it was causing some compression of his ribcage and therefore squashing his lungs effectively. His respiratory function was becoming worse and worse with every passing year. And that's really what the very frightening aspect of his case was.
When his mother explained to you that there was a major reaction in his body what was your first thought? Did you think it was an allergic reaction?
Dr. Phillips: Well let's back up and talk about how we first addressed this. There are various ways you can do the surgery. There are various different devices, but the one that we thought was most appropriate, is called a VEPTR. That's a vertical expanding prosthetic titanium rib. The titanium is important because it's generally a very inert metal and doesn't usually cause any reaction. We eventually took him to the operating room, put in two of these artificial ribs, these distraction devices to support his spine and straighten it out, and everything went well for 2 or 3 weeks. Then he started to become unwell and we thought he had an infection, just on the right side. We took the right rod out and he seemed to improve transiently, but his mom told me on several clinic visits after that that he was still having very strange symptoms. He had eczema. He was scratching his head and his chest.
He had belly pain. He had wheezing. He had an upset stomach, a very, very strange constellation of symptoms, so I was scratching my head very actively at this stage. I didn't really have any idea what was going on because this was not an infection. He didn't have a fever. His white blood cell count wasn't abnormally high, but there was something very strange going on. And then in one of his office visits, I looked at him, looked at him scratching and had this I guess “eureka moment,” an epiphany. I said “Oh my goodness, this little lad is allergic to the metal I put in his body. Then I had to start doing some research because titanium allergy is not supposed to occur. I went to the literature to see what was being published. I discovered that there is more in Google than there is in scientific literature unfortunately and some of it wasn't a very high quality, but certainly in the dental literature there was good evidence that titanium allergy, an allergy to this very, very, gentle noble metal did exist. Then the question is what on earth could we do? Well the first thing of course was to relieve his symptoms and to that end, we took out the other rod. Within probably a week or two all the scratching, the itching, the chest pain, the wheezing, the belly pain; all went away, that kind of proved, that indeed that might have been the case. But as a consequence of removing the struts that were supporting his spine, his scoliosis collapsed like a deck of cards and his lungs became even more compressed.
We were up against a really big problem. We had to confirm this notion of titanium allergy so the first thing we did from the laboratory standpoint was to take some blood and send it off to a couple of places; one in the United States and there's one other place in Europe. We chose the lab in the United States to confirm the metal allergy. Because this time was so unique and so rare, we had to reconfirm this theory. And it turned out that he was allergic to a lot of different metals, titanium, miobium, niobium, zinc, everything. Even iron which of course is a major component of stainless steel and that was a big problem. Having confirmed that his T-cells, one of the two types of cells involved in the body's immunity, did not like titanium and all these other metals, the question is well, can we sneak around this and use a different metal. A few months later, I plucked up courage to use a stainless steel rod as a test metal and implanted it underneath his forearm skin as an ultimate allergy test and within a week or so, he was doing exactly the same thing, scratching, itching, whatever. We took it out; it went away.
His symptoms resolved. He was all better. And now, we had a real problem. Because I confirmed anything with titanium, anything with steel and all these different metals we use in orthopedics, have got lots of different irons in them; they have trace elements of nickel, even things like copper, tiny amounts of that; we really were up a gum tree because there was no way we could use any traditional orthopedic metals to treat his scoliosis. In the meantime, his respiratory function was getting worse and his scoliosis was getting worse and worse. His spine was becoming more and more crooked.
And finally, what did you decide that made the difference?
Dr. Phillips: Well, it wasn't a final decision. It was a process of elimination, in many ways. When you make decisions in your life and when you come up with ideas, it isn't necessarily a single notion, but you draw from all your life experiences; you look at all of the different things that you've done; the boats you've built; the cars you fixed and that kind of stuff and in concert with talking with some engineers out at Cape Canaveral, NASA and talking with the engineers of the company Synthes that makes this VEPTR, in Switzerland, one of their engineers came over to talk to me, and then talking with the engineers from a company here in the United States, we kind of came up with a theory. What I needed to do was bamboozle Daniel's immune system by convincing his T-cells that there was no metal inside him. And we had to sort of sneak down the back stairs in a way. I thought well, we could make the actual device out of a ceramic which has been done for many years in orthopedics, but looking at the engineering challenges with that, it might not have been feasible because ceramic is very brittle and the first time he falls off his bicycle or whatever, he would potentially break. I said, okay, well if I can't make it out of ceramic, maybe we can make it out of carbon fiber. I've always enjoyed working in that medium, but then to mix carbon fiber, you have to put it in a gel of epoxy which is very, very unfriendly to the human body, so that wasn't a good idea. I thought, is there any way we can spray paint the titanium rods? I'm thinking, let's go to the hardware store and find something – well that's not going to work because those kinds of chemicals are very irritative too. I say, well how can we get carbon and wrap it around this rod because carbon is an extremely inert substance and is very, very kind to the body. Then one of the engineers said well, why don't you plasma spray the titanium with carbon. I said “What? You can do that?” And the combination of all of these kinds of different ideas came to fruition. We took some of the rods and these are actually a couple that I bent many years ago to suit Daniel's spine and these are usually a gold color and this is one of the ones that we sent to a company in Michigan and they plasma sprayed it with carbon and that's what it looked like and these are Daniel's custom made implants to fix his spine. When we had these all prepared, we took him back to the operating room, re-implanted these, expanded his spine and gave him better capacity for breathing and that was I think 7 or 8 years ago and he has never looked back since.