Jaren Riley, MD, Pediatric Orthopedic Surgeon at Rocky Mountain Hospital for Children talks about a scoliosis treatment called vertebral body tethering.
Can you tell us, when did you meet Sophia?
RILEY: I met Sophia a few years ago as a very young patient with scoliosis. She had already done quite a bit of investigation on how to treat it on her own. When I met her, she had a few ideas on how she wanted to pursue things already and was very willing to share those with me. Her mother did a really good job with that, too. They already had a good idea of what they wanted to do to move forward. And nicely enough, all their ideas coincided well with the size of her curve at the time, and the potential for that curve to get worse.
What were some of those treatments and did you work with her over several years?
RILEY: I did work with Sophia and her mom for a few years. They always presented me with ideas on how to best treat this scoliosis and eventually try to avoid surgery. They had tried some chiropractic type methods with manipulation, but also with certain body apparatuses where she would do some exercises to try and train her spine to move in certain ways. To a certain extent, I think that was effective. At least in prolonging her ability to keep the curve small and things along those lines. They would speak with me about bracing and we would try a combination of things to make it work as well as possible.
Do you usually see, over the course of a year, the degree of her curve went from 20 to 40, or something like that?
RILEY: We’ll frequently see rapid progress of the curve. Despite everything Sophia did with exercises and stretches and wearing her brace, sometimes the curve and the growth are just too powerful. Within a year, you’ll typically see the curve change 10 to 20 degrees at a time. That happens quite often.
How would you have normally treated this five years ago?
RILEY: Five years ago, we would have done the initial treatment very similar to what she was already doing. We would have tried exercises to keep her core strong and her spine flexible and tried bracing. She went about the exercises in a slightly different way, which was fantastic because she was so engaged and motivated. But, as the curve really took off, we would have had to face harder decisions about whether to perform a very early fusion, which has its potential to be bad or to place growing rods, which would have led to an eventual fusion. And, that was an outcome that she was hoping to avoid.
In a fusion, what would that do to someone 11 years old?
RILEY: A fusion at the age of 11 is usually a relatively poor choice mainly because the potential growth remaining means that if I freeze your spine in a certain position, it still has the potential to curve again and cause other problems. Fusion itself has problems anyway as far as the way it restricts motion and causes stresses at other points in the spine that really isn’t a natural sort of motion. But for a young patient, it’s an especially bad idea.
So, what did you do?
RILEY: Thankfully, Sophia came along at a time when science had some new ideas about how to do a motion sparing way of correcting scoliosis. The idea has been around for decades, but our ability to execute that surgery has not been as good. And, the tools we had to do it weren’t good enough until just a few years ago. Sophia had already been investigating this thing called vertebral body tethering. I had been investigating it as a surgeon to make sure that it was safe and effective to do. Both of those things intersected just perfectly. She was the perfect candidate for it.
Is it funny that an 11 year old was going, hey doc I found this procedure, and you’re like I’m studying that procedure, too?
RILEY: The coincidence was fantastic. It’s common to tell you the truth, to have patients and families come in to me and say we’ve read all about this. This is what we want. A lot of times it tends not to be the best thing for that patient, but it worked out perfectly for Sophia. It had that sort of fateful feeling to it that both she and I and our program were ready to move forward with it.
Can you explain it to me?
RILEY: Absolutely. The big advantages of vertebral body tethering are its ability to guide the growth of the spine. So, we take a curved spine and over time the growth allows it to become straight. Essentially in a curved spine, you have a longer side and a shorter side. We go through camera approach inside the chest to the long side of the spine and we hold onto it to stop the growth. The short side keeps growing and the curve starts to straighten out over time. Now what holds the bones together in a fusion is a rod and then bones that grow together to become solid with this surgery. We have a rope that holds the bones together, so you still have motion there and the ability to turn into bend and to twist while the spine continues to grow into a more natural shape.
When everything is straight, what happens to those ropes?
RILEY: This is where you must be the perfect candidate for the surgery. We must try and estimate the very best we can as to how much growth is remaining with how large your curve is to try and time it so that the curve straightens. Then, you get to around the time you’ve finished growing, or at least to a small enough curve, that we’re confident it will stay there for the rest of that patient’s life.
Will Sophia be taller?
RILEY: Yes, the last I heard she was an inch and a half taller. That’s common for scoliosis surgery. The initial surgery does get us some correction of the curve. Then, the growth will give us the rest. But as the spine straightens, they do get taller than they were before for sure.
Is there anything that’s going to limit her moving forward? Can she get back to gymnastics?
RILEY: Really the only thing that should limit her is her own motivation and desire, which we all know is through the roof. The surgery itself is not going to limit her in any way.
Are there any risks to this or the rope in the body?
RILEY: There are the standard risks of surgery, for sure. This is a little bit of a high-risk surgery, if you ask me. But because we know what the risks are, we go through great pains to make sure that we’re ready to take care of those things. For example, any time we change the alignment of the spine, we’re also changing the orientation of the spinal cord and all the nerves that are contained there. We have monitors that allow us to look at their brainwaves going all the way down through their nerves and make sure that as we correct the curve, everything is nice and safe. There are also the risks of the curve overcorrecting, the curve under-correcting, and ropes can break. The nice thing about a fusion is a fusion is solid. The rope, if left to its own devices in a large curve, does run the risk of breaking. And in some studies, the ropes have broken before and you may need more surgery. When I talk to patients about vertebral body tethering, we go through all those risks together. Most families see those risks as acceptable because of the big payoff of having a straighter spine without a fusion.
What’s the rope made from?
RILEY: The rope is made from a combination of fiberglass, Kevlar, and some other braided materials that make it very strong.
What would Sophia’s future be without this?
RILEY: If we hadn’t been able to do the vertebral body tethering, then we would have been left with our more traditional approaches which really are quite tried and true and can do very well. For example, we would have tried our very best to keep the curve as small as possible through bracing or casting until she was old enough to go through a posterior spinal fusion. The ultimate result of that spinal fusion probably still would have been fantastic, but long-term, there still can be those risks of decreased motion, discs having early degenerative disease than they ordinarily would. So, we do have good follow-up studies up to 40 years on spinal fusions and they do well. But I think these vertebral body tethering cases have the chance to do even better.
And no more gymnastics? Would it be no more if it was the fusion?
RILEY: Funny enough, you can still do gymnastics with the fusion. If you have a section of your spine from here to here that’s suddenly solid and everything else can move, it does cause a redistribution of forces that can cause problems later.
Is there anything else you’d like to add?
RILEY: I would just say that the vertebral body tethering is an exciting technique. It feels like a huge step forward, quite honestly, toward our goal of having the ability to correct the alignment of scoliosis without doing a fusion. The evidence is very good to support it so far. And I think if we’re safe and we pick the right patients, it’s a very good thing to do. You also must have these young people who understand that we’re learning about this technique. All of us are kind of in this exploratory phase together. It’s amazing that Sophia had the courage to be able to weigh those risks. She really deserves a huge amount of credit for being able to push this forward here in Colorado.
What is the right patient and wrong patient for this procedure?
RILEY: The right patient for vertebral body tethering is a patient with a curve between about 35 degrees and 60 degrees who has about a year and a half of growth remaining and a flexible curve. If the curve is too small, it’s probably not worth doing a surgery. If it’s too big, the rope probably isn’t strong enough to control that. Too much growth left, and they’ll overcorrect. They’ll have their curve go the opposite direction. Too little time left with growth and we probably won’t get as much corrections we want. So, it really will be a very narrow group of patients who can qualify for this, which is why it’s so tremendously important for us to recognize these scoliosis cases early so that we can watch them develop and take the correct time and patient to be able to do this technique.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
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Mari Abrams
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Mari.abrams@healthonecares.com
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