Santiago Braves Limb Reconstruction Like a Comic Book Hero

Santiago Braves Limb Reconstruction Like a Comic Book Hero

Cover story previously published in Rite Up, 2024 – Issue 1.

by Kristi Shewmaker

Santiago is an artist, creator and prop maker. An eighth grader from Josephine, he became an artist at a young age when his older brother Esteban inspired him to draw. Later, his parents, Alejandro and Maricela, surprised him with a desk and art supplies, which he fashioned into an art studio in his room. Over time, Santiago’s work has evolved from creating 2D to 3D art forms beginning with origami, which he used to begin making props based on movies.

“Drawing a character is fun, but being that character is really special,” Santiago says. A fan of Marvel Comics® and various movies, Santiago has created wearable props including the Batman® Cowl, Iron Man® Arc Reactor and Daredevil® helmet, which was signed by Daredevil film actor Charlie Cox. Santiago’s prop making mediums have advanced from using paper to cardboard to foam to 3D printing, and now, he is trying his hand at metal.

Through his school, Santiago has received multiple accolades for his art. In seventh grade, he won the regional University Interscholastic League (UIL) visual arts competition for his 3D miniature theme park based on Ant-Man®. The year before, at his sixth grade end-of-the-year awards ceremony, his school named him Artist of the Year. It was a significant award to the whole family because just a few months before, they had experienced the unimaginable.
 
On a usually empty road near Santiago’s home, it was dusk when a car took a wide turn and veered into the wrong lane toward him. Riding his dirt bike, Santiago swerved, but a mailbox was in the way, and the car struck him causing a severe traumatic injury to his left side.
 
“I was shocked,” Santiago says. “I didn’t feel anything, but I had an idea of what happened, and I didn’t want to look down.” The neighbor called 9-1-1. Then, Esteban arrived. “I felt bad for my brother,” Santiago says. “He saw everything.” While lying on the driveway, Santiago asked Esteban if his dirt bike was OK. “I tried to make a joke to brighten the mood, to bring a little light into this dark situation,” he says.
 
Santiago was taken by helicopter to Children’s Medical Center Dallas, where he underwent numerous surgeries. “We couldn’t believe this was happening,” Maricela says. “We have never had anybody in our family go through an accident like this.” After receiving initial treatment for his injury, Santiago was referred to Scottish Rite for Children under the care of pediatric orthopedic surgeon David A. Podeszwa, M.D.

“Santiago sustained a very severe leg injury — as bad as they come,” Dr. Podeszwa says. “His femur was shattered. We call it comminuted, meaning it was broken into dozens of pieces. He also had a segmental loss, a large portion of bone in his femur was missing.” The break in his femur also disrupted his knee joint, and his tibia was fractured. Santiago’s leg would need complete reconstruction.

In surgery, Dr. Podeszwa inserted a spacer with antibiotics into Santiago’s femur where the bone was missing. Then, he secured an external fixator onto Santiago’s leg that spanned from the femur across the knee to the tibia to hold everything in place. “With an injury to the bone, there is always a huge soft tissue injury associated with it,” Dr. Podeszwa says. “We needed his soft tissues to heal before we could reconstruct the bone in his leg.”
 
Santiago would continue to receive specialized care through Scottish Rite’s Center for Excellence in Limb Lengthening and Reconstruction (CELLR). Led by CELLR Clinical Director Dr. Podeszwa and CELLR Research Director Mikhail Samchukov, M.D.*, Santiago’s multidisciplinary team of experts also includes CELLR Director of Clinical Implementation and Outcome Studies Alexander Cherkashin, M.D.**, Emily Elerson, R.N., and pediatric psychologist Whitney Herge, Ph.D.
 
For more than 30 years, Drs. Samchukov and Cherkashin have pioneered research and development for limb lengthening and reconstruction techniques at Scottish Rite. Having studied under Gavril Ilizarov, M.D., in Russia, Drs. Samchukov and Cherkashin along with Scottish Rite researchers modified Ilizarov’s original external fixator and developed and patented the TRUE/LOK™ External Fixation System. Scottish Rite’s innovation and continual advancement, in collaboration with Orthofix® Medical Inc., has revolutionized limb lengthening and reconstruction methods through this system that is implemented by surgeons around the world. Santiago was the first patient at Scottish Rite to receive the TrueLok™ EVO, the latest generation in the series of circular external fixators.
 
After four months of healing, Santiago underwent femur reconstruction surgery in which Dr. Podeszwa initiated a technique called bone transport, a procedure that encourages new bone to grow. Because Santiago had lost 3 inches of bone and bone cannot regrow in a gap that large, Dr. Podeszwa cut his femur creating a segment of bone above the gap and a new space where bone could regenerate. Over many months, Santiago turned pins on the outside of his external fixator. The pins were connected to wires inside his leg that pulled the segment of bone down to fill in the gap caused by the injury. As the bone was transported into the gap, new bone grew in the space created above
 
“Of the 8-centimeter gap that he lost initially, we reconstructed a solid 7 centimeters of it,” Dr. Podeszwa says. “He basically grew himself a new 3 inches of thigh bone.”
 
“It was absolutely amazing to us,” Maricela says. “We cannot believe Santiago was able to do that.”
 
Bone transport is an uncommon procedure. “Fortunately, at Scottish Rite for Children, we not only have the support of the institution to manage very complex, labor-intensive treatment but also a team that is highly specialized and can help kids who suffer from complicated injuries or conditions,” Dr. Podeszwa says.
 
After a few more surgeries and a lot of healing, Dr. Podeszwa removed Santiago’s external fixator in August of 2023. Now, Santiago wears a knee-anklefoot-orthosis, a brace designed to improve mobility, increase bone and muscle strength, and enhance independence.

“Because of the magnitude of his injury and the damage to his knee and thigh muscle, Santiago will require rehabilitation to recover his knee motion and strengthen his quad,” Dr. Podeszwa says.
 
At Scottish Rite for Children Orthopedic and Sports Medicine Center in Frisco, Santiago undergoes weekly physical therapy, rotating between land and aquatic therapy. He works on endurance in the AlterG® AntiGravity Treadmill,™ which uses technology originally developed for NASA astronauts. It allows him to walk with less weight on his muscles, joints and bones as he builds strength. In the HydroWorx® therapy pool, Santiago works on mobility, knee range of motion and strengthening. “Santiago has exceeded our early expectations regarding rehab,” Dr. Podeszwa says, “and we look forward to seeing continued improvement over the next six to 12 months.”

Santiago has endured a long, difficult journey since the injury, but he says that now, he feels more relaxed, more free. “In my opinion, the hard part is over,” he says.
 
Maricela is happy to see Santiago progress. “I think God specifically put Dr. Podeszwa in our lives and now, slowly, we can see that Santiago is going to be OK. He has the best doctors working with him, and that’s a blessing. We’ve learned to accept what’s going on and enjoy the fact that he’s here.”
 
According to Dr. Podeszwa, Santiago is a role model for kids who go through this type of complex treatment after a traumatic injury. “It’s amazing what adversity can do,” Dr. Podeszwa says. “Some people champion it. Others are wrecked by it. Fortunately, Santiago has championed it. He has an incredible artistic mind and has put his energy into maintaining his academic and personal growth in spite of all that he’s been through. It’s been impressive to see.”
 
“Scottish Rite is a symbol of hope,” Santiago says. “I’ve learned that I can be strong when it comes to most things going on around me and with me, and I can find light in every dark place.”

Read the full issue.

Why I Run: Family Support

Why I Run: Family Support

Meet Preston, a patient who was seen by our team of experts. Learn more about his journey below.BMW Dallas Marathon

Blog written by Preston’s dad, Preston.

Our son Preston lives with a condition known as Klippel-Trenaunay-Weber Syndrome (KTWS). In short, it is a

This image ALT text is: A baby is standing next to a woman on a wooden floor .

 vascular disorder that can cause vascular malformations and affect skin and bone development. The effects vary dramatically between patients. Preston is affected throughout the entire lower half of his body. He has abnormal vein development (an abnormally large number of veins) throughout his abdomen and legs, which can cause internal bleeding, pain, fatigue, etc. As it relates to Scottish Rite for Children, however, is the abnormal development of his right leg. He was born with a significantly small right leg that also has some joint misalignment in the ankle and knee. This leg length discrepancy caused significant issues with walking or climbing stairs, and it virtually eliminated his ability to run or play like other children.  

A baby is standing next to a woman on a wooden floor .

Our journey to Scottish Rite was not immediate. After diagnosis, our initial concern from our doctors here in Houston were the immediate vascular issues. Once we addressed this, we were referred to an orthopedist locally who was the “best” per our referrals. This doctor did not, however, prove to be the best for us and left us desperate to find someone to help. We tried several locally, but none were equipped to manage his orthopedic needs and grasp his KTWS. One of his vascular team doctors recommended Scottish Rite. Up to that point, we were unfamiliar with the hospital.  

As you can imagine, our family has visited many hospitals over the years, and I don’t have to tell you how emotionally challenging it could be for us. I can tell you that the moment we drove into the parking lot at Scottish Rite, we knew it was different. My wife and I were initially confused when we could not locate where to pay for parking, never thinking that we might not have to pay to park. Our whole family was blown away by the difference that can be felt when you are at Scottish Rite. It is the only hospital where we are not anxious or confused. From the moment you walk through the doors, everyone is helpful and happy, also something we rarely see at other hospitals. Preston’s experience with Dr. Podeszwa and his team of doctors at Scottish Rite has been exceptional, and he looks forward to each trip to Dallas for his appointments. We always stop for lunch at his favorite restaurant, Half Shells in Snyder Plaza, while there.  

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After several years of monitoring his legs and getting by with orthotics and knee braces, he underwent an epiphysiodesis surgical procedure to help even out the length of his legs. Dr. Podeszwa and his team performed the surgery in November of 2020. We have seen a significant decrease in the leg discrepancy over the last year and a half. This has allowed him to participate in sports, with baseball being his favorite. While he may not set any records as the fastest on his team or be the most graceful, he can now run the bases on his own without the need of assistance or a pinch runner. This has had a dramatic effect on his self-confidence and our peace of mind. While he will live with KTWS his entire life, the reduction of his limb discrepancy will help him get closer to a typical lifestyle.  

Preston and I have discussed, at length, getting further involved with Scottish Rite. We decided this year would be a good time to get involved. I would typically run the NYC Marathon in November or the Houston Marathon in January, but we thought running in Dallas would be a great experience for the whole family and help him give back to Scottish Rite. Preston has been joining me as I train for the marathon – he bikes while I run. While he isn’t ready to run a marathon yet, Preston is excited to serve as one of the Junior Race Directors for the 2022 BMW Dallas Marathon. Our whole family is excited to give back, and we are thankful to have the opportunity to play a small part in helping Scottish Rite continue its ability to help all children.  

A man is running and a boy is riding a bike

Since 1997, Scottish Rite for Children has been the primary beneficiary of the BMW Dallas Marathon. This weekend, spectators will line the streets and neighborhoods of Dallas to cheer on participants. Learn more about registering for the BMW Dallas Marathon and how to the support runners.

Learn more about our Center for Excellence in Limb Lengthening

Overcoming Hardship with Humor and Hope

Overcoming Hardship with Humor and Hope

Article previously published in Rite Up, 2022 – Issue 3.

“Why do nurses like red crayons?” says 17-year-old Mikaylin, of Forney. She pauses. “Sometimes, they have to draw blood.”

Exchanging dad jokes, eye rolls and laughs with pediatric orthopedic surgeon David A. Podeszwa, M.D., became a tradition after Mikaylin came to Scottish Rite for Children in the spring of 2021. She has looked forward to every appointment since.

Before finding Scottish Rite, Mikaylin endured years of extensive treatments and setbacks that left her and her mother, Laneesha, feeling despondent. What began as pain in her legs while playing basketball turned out to be stress fractures. A doctor surgically implanted rods into her legs, but the bone in her right leg became infected. They tried to fight the infection through multiple surgeries without success. Finally, the doctor said that she needed to consider amputation.

“I was at a point where I was like, ‘I just want to get this over with. Just take the leg away from me,’” Mikaylin says. Laneesha researched other options and consulted with another physician who referred Mikaylin to Scottish Rite. “When we arrived, Mikaylin was really down,” Laneesha says. “But after our first visit, her outlook completely changed because they gave her hope.”

Experts from Scottish Rite’s Center for Excellence in Limb Lengthening and Reconstruction (CELLR) designed a customized treatment plan to save Mikaylin’s leg. Dr. Podeszwa and a team of specialists surgically removed more than four inches of infected bone from her leg and attached the TRUE/LOK™ External Fixation System, a device that would support the reconstruction of her bone throughout the next year.

“The day after surgery, Mikaylin got out of bed and put weight on her leg for the first time in 18 months,” says Emily Elerson, R.N. “When I saw the look in her eyes, I knew that was the turning point for her.”

Next, the team conducted a bone transport — a procedure to grow new bone where the infected bone was removed. To facilitate this surgery for Mikaylin’s specific case, new equipment was invented and attached to the fixator. “Mikaylin will be remembered long after we’re gone,” Dr. Podeszwa says, “because of the complexity of her treatment and how resilient she was with postoperative rehabilitation.”

In August, Dr. Podeszwa removed the fixator from Mikaylin’s leg. For a month, Mikaylin was on crutches, but at her next appointment, she received the big news — she could finally walk on her own. “We talk about how sad we’ll be when we don’t get to come to Scottish Rite anymore,” Laneesha says. “Mikaylin loves everybody there. They’ve become a huge part of her life.”

“I’m going to miss them a lot,” Mikaylin says. She hopes to keep in touch and possibly volunteer one day. When asked what she most looks forward to doing after recovery, Mikaylin says — without missing a beat — “shave my legs!” Laneesha laughs and says, “And, she can’t wait to wear pants.”

Read the full issue.

5 Common Questions About Limb Lengthening

5 Common Questions About Limb Lengthening

At Scottish Rite for Children, the Center for Excellence in Limb Lengthening and Reconstruction includes a multidisciplinary team of experts who collaborate to determine the best treatment plan for each patient. We know there are a lot of questions if your child begins treatment for their limb length discrepancy. Below are the most commonly asked and the answers from our team. 

Do I Have to Have Surgery?

If the difference between the lengths of your limbs is significant (more than 1 inch), surgery may help to prevent problems in the future. For small limb length differences (1-2 inches), sometimes a small surgery (an epiphysiodesis) that slows down the growth of the long leg and allows the shorter leg to grow and catch up is all that is needed. For bigger limb length differences, lengthening the short leg is needed. There are different techniques for lengthening a leg, including lengthening rods that are placed inside the bone or an external fixator, an advanced device developed at Scottish Rite for Children that is around your leg and attached to your bone. The type of device used is frequently determined by the cause of your leg length difference. The Limb Lengthening and Reconstruction team will explain the best technique for you. Both techniques lengthen the bone very slowly over several weeks. 

How Does the Limb-Lengthening Device Work?

When using the lengthening rod, the doctors separate the bone in your shorter limb and insert the rod inside the bone. The rod will be secured to the bone at each end of the rod. After surgery, you will use a device that rests on your leg to activate the rod to slowly lengthen and separate the bone a little bit each day.  

The external fixator, the TL Hex External Fixator System, has rods that are attached to each side of the separated bone. These rods are connected to rings attached to the outside of your limb. Every day, you will turn struts that connect the rings and cause the rings and the bone to slowly separate and lengthen. The frame will support your limb while the rods help the bone to grow. 

Will Limb Lengthening Hurt?

During surgery, you’ll be under anesthesia, so you won’t feel a thing. Whether you use the lengthening rod inside the bone or the external fixator, there is soreness as the bone and muscles lengthen. Your doctor will be able to give you medication to minimize the pain. In addition, Scottish Rite for Children has pediatric psychologists who will teach you other ways to manage your pain.

How Long Will Lengthening Take?

The amount of time you will need to wear the frame will be determined by how much your limb needs to grow. Regardless of the technique, for most patients, it takes six to nine months from the time of surgery to the time you are back to running and jumping. Most of the bone lengthening actually takes place in the first few months. After that, it takes time for the bone to fully heal and for you to get your full strength back.

When Can I Return To My Normal Activities?

After you spend a little time healing from your surgery, getting back to as normal a routine as possible is really important. Lengthening your leg and doing your daily exercises becomes part of your regular day. You will go back to school and participate in many of your typical activities. If you have a lengthening rod, you will not be able to put all of your weight on the leg being lengthened and will have to use crutches until the bone is almost completely healed. If you have an external fixator, the frame will support your whole body weight and after a few weeks you won’t need crutches. While you are lengthening your leg, you will visit the doctor every week, but once the lengthening is completed, you will only need to visit monthly.

#SRHaccess Facebook LIVE Recap: Limb Lengthening – Intramedullary Lengthening

On this week’s Facebook live, Co-director of the Center for Excellence in Limb Lengthening David A. Podeszwa, M.D. joined us to discuss intramedullary lengthening – a form of treatment for our limb lengthening and reconstruction patients.

 the Facebook live.

Watch –What is intramedullary lengthening and how does it work?

  • It is a technique of lengthening the bone that uses a rod that is surgically planted inside the bone, lengthening it over time using a magnet or an electrical current.

When is intramedullary lengthening used as a treatment plan?

  • Ideal for patients who have a leg-length discrepancy over 4 or 5 centimeters at the time that they’re done growing.
  • Intramedullary technique works better in patients who have straight bones

What’s the difference between the external fixators and intramedullary rods?

  • Usually, an intramedullary rod is preferred over an external fixator.
    • Quality of life is better for patients with intramedullary rods.
    • Less pain for the patient, and less care required with intramedullary rods.

Different types of intramedullary rods:

  • Magnetic rod – a magnet slowly lengthens the rod inside the bone
  • Electrical current – a small transducer sends an electrical current that slowly lengthens the rod.

How long do patients stay in the hospital after one of these rods is implanted?

  • A majority of the time the rod goes in and the patient will go home the next day.
    • We wait anywhere from 5-14 days after the rod goes in before we start lengthening process in clinic.

How long does the lengthening process take?

  • It’s going to be at least between six and nine months.
    • The bone will lengthen about a millimeter a day, and every centimeter of lengthening requires about a month of healing.

Multidisciplinary approach:

  • A child whose limb length difference is over two inches requires a team of experts to guide the patient and their family through the six- to nine-month process.
  • Working as a team: before a surgery date is set, the patient and their family meet with multiple departments within the hospital.
    • Physicians meet with fellow physicians to discuss the treatment plan.
    • Patient meets with the nursing team to discuss education regarding the procedure and what to expect.
    • Our psychology team meets with the patient and family to help them understand the treatment and how to cope with the before and after stages.

At what age our patients a candidate for an intramedullary rod?

  • Patients become candidates when they are 8, 9 or 10 years old, depending on the deformity.
    • In most cases, it is best to wait until the patient is done growing.

What’s the activity level allowed during this process?

  • Once the lengthening process begins, the patient will be on crutches until the lengthening process is complete and the bone has healed enough to walk on it again.
    • Between the daily physical therapy and the extended time on crutches, the patient is the most important part of the lengthening process.

Final thoughts about limb lengthening:

  • As the technology improves, it will open a lot of doors for patients.
  • In the end, treating the difference is to improve the patient’s life, but not define their childhood.

Our experts are here for the patient and their family every step of the way.  Have more questions about limb lengthening?  Email askadoc@tsrh.org.

Learn more about limb lengthening and the research our hospital is conducting.