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A Parent’s and Patient’s Perspective on Scoliosis – Allison’s Amazing Journey

A Parent’s and Patient’s Perspective on Scoliosis – Allison’s Amazing Journey

by | Jun 7, 2024 | Scoliosis & Spine

Lisa, mom of Allison, shares what it was like for her daughter Allison to be treated at Scottish for Children for scoliosis:
 
What brought you guys to Scottish Rite?
Allison was 8 years old when we went to her pediatrician for back pain she had recently been experiencing. At her appointment, the doctor noticed a curve in her spine and diagnosed her with scoliosis. After confirming her condition with an X-ray, Allison was referred to Scottish Rite for Children by her doctor. We were also told by others to go to Scottish Rite for the best care possible. From the moment we walked in the front doors, the sense of peace we felt was so overwhelming. We knew our decision to come to Scottish Rite was the right one!
 
What was your experience like with Dr. Ramo and the Scottish Rite staff?
The compassion Dr. Ramo, his nurse Marivel and his entire team showed us is something we will never forget. As parents who were very concerned about this diagnosis, Dr. Ramo explained everything thoroughly. He answered all our questions and addressed our concerns, which made us feel very confident in the treatment and surgery plan for Allison. With her very young age and significant curve, her treatment plan was to insert MAGEC® growing rods which would be lengthened every six months to allow for more growth before her spinal fusion. With Dr. Ramo’s expertise and knowledge, we knew we would get through this.

Do you have any advice for parents whose children have recently been diagnosed with scoliosis? 
Remember that as worried as you might be for your child, your child is scared and worried, too. Encourage them to write down or ask questions they may have about their treatment plan and surgery. Dr. Ramo would always ask Allison if she had any questions for him. He would answer every question looking directly at her, so she understood. Him taking the extra time to do all of this made her feel better and settled her fears. 
 
What’s it like to see Allison where she is today? 
Seeing Allison where she is today fills us with such gratitude. The doctors at Scottish Rite are unmatched in their skills. God has given them their knowledge and expertise in their chosen field and helps them perform miracles every day. We feel blessed to have been a part of these miracles. 

What do you want people to know about Allison’s accomplishments?
We are so proud of Allison’s accomplishments. She has been on the honor roll since she first started school. She recently graduated high school as a member of the National Honor Society, AP Ambassadors, and she was enrolled in Dual Credit and On Ramps classes. Because of her high academic achievement, she has qualified for automatic acceptance to the University of Texas at Austin and Texas A & M. She has also been accepted to SMU, UNT, Baylor and TCU. She recently made her decision to commit to TCU to further her academic career by majoring in marketing. She is excited to experience college life living in the dorm and meeting new friends. 
We are also proud of her involvement with the Peer Support program at Scottish Rite. She has talked on the phone and on FaceTime with other patients – walking them through the process of scoliosis surgery. She has said, “If I can help someone else by answering their questions in hopes of making them feel better and easing their fears, than every minute I’m on the phone with them is worth it. Hopefully, they can see and hear that I did it, and they can too!”
 
Is there anything you want to say to Dr. Ramo and his team?
We are eternally grateful to Dr. Ramo and his team. They are like family to us. We recently returned to Scottish Rite to see Dr. Ramo for her final follow up. Walking through those doors again felt like coming home! Marivel changed her schedule to be there when we came just so she could see Allison and catch up on her progress! What a great visit we all had! Scottish Rite will always hold a special place in our hearts! 
 
Allison, a former patient treated by Brandon A. Ramo, M.D., for scoliosis, shares her experience at Scottish Rite and what other kids should know:
 
Tell us about your journey with scoliosis and Scottish Rite for Children.
My journey with scoliosis and Scottish Rite for Children started when I was in second grade after I began to experience severe back pain. Even though I was very young, I knew that something was wrong. My parents took me to Scottish Rite, and I had growing rods put in to straighten my spine. About every six months, I would have my growing rods lengthened as my torso grew. When I was in fourth grade, I had my final spinal fusion. In the beginning, I was very scared about my situation since there were so many uncertainties. Scottish Rite for Children helped me tremendously through everything by having phenomenal staff who supported me through my journey. I felt comfortable throughout the entire process, which made my journey a lot easier and helped me through my fears. 
 
What would you tell other kids about Scottish Rite?
I would tell other kids that Scottish Rite is the best hospital and has some of the best people you will ever meet. No matter what you are going through, they will be there to support you in any way possible and help you have an easier experience. There are fun things to do that give you things to look forward to when you go. You will meet staff who are the most compassionate and caring people you have ever met. Overall, Scottish Rite is an amazing place with outstanding people and resources. 
 
What is your advice to other kids who have been diagnosed with scoliosis?
I would advise other kids who have been diagnosed with scoliosis to not be afraid. I was very afraid when I was first diagnosed, but my fears were eased when I realized what amazing people would be taking care of me and helping me through my situation. It may seem scary at first, but trust me, it will become a lot less scary. Remember that you have people supporting you and wishing the best for you! 
 
What is your favorite thing about or favorite memory of Scottish Rite?
One of my favorite things about Scottish Rite was the dogs that visit you every week in the Inpatient Unit. I can remember how excited I was to pet the dogs, especially since I never had a dog. I was amazed that the dogs were so intelligent. Many of them knew all kinds of tricks, and one of them could even tell you it’s age. This was a memorable experience for me since I was really scared of having surgery, and having the dogs visit me helped me calm down and feel better about the situation. 
 
What are your plans after high school graduation?
After high school graduation, I am going to be attending college at TCU and majoring in marketing. I am really excited for my new home as a frog, and I am ready to get the education I need to make a difference with my future career. I am also looking forward to living on campus and making new friends. I am thrilled to be able to further my academic career at college. 
 
Some patients with scoliosis are worried surgery will cause them back pain when they get older. Can you share a little about your experience?
In my experience, my back pain became significantly better after I had surgery. Before I had surgery, I would get random episodes of extreme back pain. As I have gotten older and since I have had surgery, I have little to no back pain. The surgery for me was life changing in terms of pain. I can sit and stand for long periods of time, which I wasn’t able to do before. Now, I don’t even think about my back anymore in my daily life since it doesn’t really hurt anymore. 
 
Is there anything you would want to say to Dr. Ramo and his team?
I would want to tell Dr. Ramo, Marivel and his entire team thank you for everything you have done for me. They did an exceptional job treating me and helping me through my scoliosis journey. There are not enough words to describe how thankful I am for the team and how they supported me. They were always there for me and answered all my questions regarding my scoliosis. I always felt at ease at Scottish Rite because of my confidence in Dr. Ramo and his team and their outstanding skills and capabilities.
 
Learn more about our expert scoliosis care and our Center for Excellence in Spine.
 

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A Shared Passion to Protect and Serve

A Shared Passion to Protect and Serve

by | Oct 25, 2023 | Scoliosis & Spine

Published in Rite Up, 2023 – Issue 3. 
 
Last summer, the Inpatient Unit at Scottish Rite for Children had extra security and cuteness overload in the form of a 4-year-old patient lovingly referred to as Policeman Joseph. Donning a police vest, badge, walkie-talkie and binoculars, Joseph, of Gonzales, Louisiana, made daily rounds to keep his fellow patients safe. “He’s got a huge personality stuffed inside a little body,” says Randi, his mother.
 
Joseph has congenital kyphoscoliosis. In utero, his vertebrae formed differently, which caused both kyphosis, or an outward spinal curve, and scoliosis, a sideways curve. At age 2, Joseph was referred to Scottish Rite for Children where he received expert care from pediatric orthopedic surgeon Amy L. McIntosh, M.D.

When Dr. McIntosh evaluated Joseph, his curve measured more than 80°, which was beyond the point when surgery is recommended. “For young children who have severe congenital curves, bracing or casting doesn’t help because of the abnormal vertebrae,” Dr. McIntosh says. “You have to wait until they’re big enough to surgically fit an implant in them.” Dr. McIntosh monitored Joseph until he was 4. When his curve reached 100°, she recommended six weeks of halo-gravity traction followed by surgery.

Halo-gravity traction gently stretches and straightens a significantly curved spine in a slow, safe manner. “It’s like taking a spring that’s coiled up and slowly uncoiling it over time,” Dr. McIntosh says. While Joseph was under anesthesia, Dr. McIntosh applied the halo by attaching it to his skull. “I didn’t even feel it,” Joseph says. “It was super magic!” With the help of his care team, Joseph could fasten his halo to a traction device on a pulley system that connected to his walker, wheelchair or bed.
 
While in traction, Joseph participated in therapeutic recreation, physical therapy (PT) and fun activities in Child Life. “He made friends with everyone, especially the security officers,” Randi says, “and he loved growing his muscles in PT, so he could keep his new friends safe. Scottish Rite became our second family, a home away from home.”
 
When traction was complete, Joseph underwent surgery. Dr. McIntosh inserted a magnetic growing rod, also known as the MAGEC® System, on one side of his spine and a sliding traditional growing rod on the other side. After a successful procedure, his curve measured 42° — a correction of almost 60%. “He got almost two inches taller,” Dr. McIntosh says.

 Going forward, the rods in Joseph’s back will be lengthened as he grows. Rather than undergoing multiple surgeries, an external magnetic device will be used to locate the magnet inside the rod to lengthen it. “The magnetic rod acts as a motor to drive the traditional rod that will slide,” Dr. McIntosh says. This hybrid construct will control the correction of Joseph’s spine until he stops growing and ultimately receives a definitive spinal surgery. “Joseph’s care has been top-notch,” Randi says. “Dr. McIntosh is absolutely the best, a true godsend.”
 
On his last day at Scottish Rite, Policeman Joseph made his final rounds, protecting the kids and doing a celebratory safety dance on his way out.
 
Read the full issue.

Megan E. Johnson, M.D., Appointed Program Director for Pediatric Orthopedic Surgery Fellowship

Megan E. Johnson, M.D., Appointed Program Director for Pediatric Orthopedic Surgery Fellowship

by | Oct 24, 2023 | Scoliosis & Spine

We are honored to announce the appointment of Megan E. Johnson, M.D., as program director for the Dorothy & Bryant Edwards Fellowship in Pediatric Orthopedics and Scoliosis at Scottish Rite for Children. The Edwards fellowship is one of the oldest and largest fellowships in the country and has an alumni of nearly 200 surgeons.  
 
With this new appointment, Dr. Johnson will be responsible for attracting outstanding candidates from diverse backgrounds and training them to be skilled clinicians and surgeons. Dr. Johnson will ensure ongoing maintenance of a high-quality educational curriculum for our fellows and provide leadership and direction to our orthopedic faculty who take part in education. She will have a key role in ensuring our curriculum is undergoing needed innovation through regular program evaluation and quality improvement.
 
Dr. Johnson received her medical degree and completed residency training at Vanderbilt University in Nashville, Tennessee. She completed her pediatric orthopedic fellowship at Scottish Rite for Children in 2015, and following her fellowship, she returned to Vanderbilt University Medical Center. She joined the Scottish Rite for Children staff in 2020 as a pediatric orthopedic surgeon. Her clinical practice focuses on spine deformity in the pediatric population. She also treats patients with spina bifida, not only for their spine conditions but also for lower extremity issues. Dr. Johnson also serves as the Medical Director of Ambulatory Care and is an assistant professor of Orthopaedic Surgery at UT Southwestern Medical Center. 
 
“Dr. Johnson is an excellent clinician in the outpatient, inpatient and surgical setting and is an extremely talented surgeon who takes on both the straightforward as well as the complex deformities,” says Chief of Staff Daniel J. Sucato, M.D., M.S. “Not only is she a great leader, but she also has a natural ability to educate and is one of the favorites of our fellows to work with in the operating room and clinics.”
 
Dr. Johnson succeeds Dr. Sucato, who has served as program director of the Pediatric Orthopedic Surgery Fellowship program for the past 10 years. Dr. Sucato will remain Chief of Staff of Scottish Rite for Children as well as the director of Scottish Rite for Children’s Center for Excellence in Spine.

Share Your Story: Connor’s Comeback

Share Your Story: Connor’s Comeback

by | Sep 1, 2023 | Scoliosis & Spine

Meet Connor, a strong and determined athlete whose journey with Scottish Rite for Children began when he was just 10 years old. His scoliosis was first noticed by his mom when she noticed his clothes hung differently. She asked his pediatrician, who referred them to Scottish Rite spine experts. Visiting Chief of Staff Dr. Dan Sucato, Connor’s scoliosis was identified as a 30-degree curve at the time, prompting regular monitoring every six months.

As Connor grew and got more into school sports, his scoliosis curve increased too. His curve was 60 degrees, causing him discomfort. Frustrated with the limitations his condition imposed, Connor decided at 15 that he was ready for a change and opted for surgery.

Last summer, Connor underwent spinal fusion surgery. He spent three nights recovering in our inpatient unit. The support he received from our medical team eased his worries, making him feel at ease about the surgery. His quick recovery amazed everyone, allowing him to celebrate his 16th birthday with friends just two weeks later.

The transformation was remarkable. His shoulders were even, and his T-shirts fit properly. His dedication to recuperation and determination to regain his active lifestyle paid off. With his scoliosis corrected, Connor joyfully rejoined the high school junior varsity football team and played in his first game after taking a year off.

But it wasn’t just the surgery. Connor found comfort at Scottish Rite, from our yummy popcorn to our caring staff who he says felt like family to him. Dr. Sucato didn’t just fix his scoliosis; he brought back normalcy. With no more limping due to his hip pain, Connor got his life back. He’s loving football, golf, hiking and rafting. Watching sports and eating out with friends now brings him joy, as he embraces his new freedom without limitations.

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Gracee Gets Back in the Game After The Tether™ Spinal Surgery — the First at Scottish Rite

Gracee Gets Back in the Game After The Tether™ Spinal Surgery — the First at Scottish Rite

by | Jun 1, 2023 | Scoliosis & Spine

Cover story previously published in Rite Up, 2023 – Issue 1.
by Kristi Shewmaker

Gracee never imagined that one day she would play basketball in the Dallas Mavericks® practice gym, much less play one-on-one against her 6’5” pediatric orthopedic surgeon. As a 15-year-old high school varsity basketball player of Tuscola, she also never imagined that three months before that, she would be the first patient at Scottish Rite for Children to receive The Tether™ Vertebral Body Tethering System, a surgically implanted spinal device that is used to treat scoliosis.

Gracee grew up with basketball. “As a little girl, she went to the gym a lot because we were in the gym a lot,” says Carla, her mother. Gracee’s father, Hunter, is the high school varsity girls basketball coach. Gracee watched him coach her older sister before playing herself.

Gracee started playing competitive basketball in second grade. “We sent letters home to the girls in her class saying that we were going to meet one day a week to skill and drill,” Hunter says, “and it grew from there.” Throughout the years, Hunter coached Gracee and her team in various leagues. In middle school, Gracee joined her school team. In high school, Gracee started on the varsity team with some of the same girls that she has played with since second grade. “What I love most about basketball is the friendships that come with it,” Gracee says.

The summer before her freshman year, Gracee was seeing a chiropractor for an issue with her hip flexor, and Hunter mentioned that she had scoliosis during the appointment. A school nurse had noticed it during a routine screening when Gracee was in elementary school. Her curve was less than 10°, so her pediatrician had been monitoring it. “When she laid down on the chiropractor’s table, and I saw her back,” Hunter says, “I was like, ‘Oh my gosh!’ We didn’t realize to what degree the curve had gotten.”

Hunter contacted Scottish Rite for Children for help, and there, Gracee was diagnosed with adolescent idiopathic scoliosis. This condition occurs in patients ages 10 to 18, and the cause is unknown. Her curve measured 42°. “I was shocked,” Gracee says. “I didn’t think it would be that bad.”

Initially, Gracee wore a brace to prevent further progression and to try to avoid surgery. However, within months, her curve progressed to more than 50°, which experts call the surgical threshold — the point when surgery is recommended to stop a curve from getting larger. “In a certain subset of kids wearing their braces, the curve still progresses,” says Jaysson T. Brooks, M.D., pediatric orthopedic surgeon. “They have so much growth potential left, their spine overpowers the brace.”

When Gracee and her family first met Dr. Brooks, they began discussing treatment options in anticipation of the need for surgery. Dr. Brooks presented two surgical options, including spinal fusion, which he calls “the gold standard treatment,” and The Tether™, a new non-fusion surgical device he had used previously to treat scoliosis but had not been used at Scottish Rite.

In a spinal fusion, screws are inserted into channels of bone surrounding the spinal canal. Two rods are secured into the back of the screws with set caps and tightened with a torque wrench. Bone graft is placed along the implant to help the vertebrae fuse together. This procedure stops the growth in the previously curved part of the spine and prevents the curve from coming back.

When using a tether, a flexible cord is attached with screws to the vertebrae on the side of the spine that curves outward, which is also known as the convexity of the curve. The tether slows the growth on the outward side of the curve while allowing the inward side of the spine to continue growing. During surgery, the flexible cord is tensioned, which corrects the curve to some degree. As a child grows, the spine grows straighter because the tether guides it into the correct alignment. The Tether™ is a non-fusion implant that allows children to maintain the majority of their natural spine flexibility
 
“Gracee was a good candidate for this procedure because her curve is flexible, and she was still really young from a bone standpoint, or skeletal maturity,” Dr. Brooks says. “The younger your skeleton is, the higher chance you have of getting taller, and using a tether requires you to be able to grow taller because it capitalizes on that growth.”
 
Over several appointments, Dr. Brooks discussed the pros and cons of each surgery, the difference in incisions, how X-rays look when rods versus a tether are attached to the spine, and the potential downsides and risks. “He did a really good job explaining the difference between the two,” Gracee says. “He also did a really good job of making me feel calmer.”
 
“There wasn’t a lot of anxiety on our part about which way to go,” Hunter says. “In my mind, vertebrae are meant to be flexible. If you can keep it the way God designed it, I think you’re better off. Obviously, there are times when the fusion is the only answer, but with this being another option, we wanted to try it.”
 
Gracee’s family chose this device because they wanted to maintain the overall flexibility of her spine as well as endure a shorter recovery period, so that Gracee could get back to playing basketball as quickly as possible.
 
“They are very intelligent and very pragmatic to approach a procedure that is this new and say, ‘I think this is going to be the right thing for my daughter,’” Dr. Brooks says. “They were mature enough as a family to say, ‘we’re okay with the potential consequences, but we think that the benefits outweigh the risks.’ You couldn’t have asked for a better family to be the first family for The Tether™ at Scottish Rite.”
In April of 2022, Gracee underwent surgery. “I wasn’t that nervous going into it,” Gracee says. “When I got out, I was excited to finally be good. I was excited about it.”
 
“The whole time, I felt like she was in very good hands,” Carla says. “Dr. Brooks’ knowledge is one thing, but he is very compassionate and caring as well. I truly felt like he loved my child.”

Two weeks later, Gracee went back to school. After six weeks, she played her first post-surgery game, and after three months, she found herself at the Dallas Mavericks® practice gym playing basketball with Dr. Brooks.

“It was a really cool experience,” Gracee says. “Dr. Brooks did pretty good.”

The feeling was mutual for Dr. Brooks. “It was a special opportunity for sure,” Dr. Brooks says. “I was pretty good at basketball in high school, but I’m super out of shape now. The only thing I had to my advantage was my height. Where she beat me in speed, I used my height.”
 
Gracee has played shooting guard for as long as she can remember. Hunter explains that she shoots in the 40% range from the three-point line. “Gracee’s a good shooter because she’s up at the gym at 5:00 or 5:30, three or four mornings a week working on her shots,” Hunter says. “Our basketball program is highly competitive. They’re ranked No. 2 in the state.”
 
In December, Gracee’s team won the Whataburger® Basketball Tournament, an invitation-only tournament in Fort Worth. When it was over, five players out of approximately 160 girls were chosen for the alltournament team. Gracee was one of the five.
 
“Going from being on a surgery table in April to being able to do that in December is just phenomenal,” Hunter says. “Gracee’s always been a spunky kid. There wasn’t much spunk a year ago, but we’re seeing it come back.”

Today, Hunter says that they have no regrets about choosing tethering, but he knows that it is still early. During surgery, Gracee’s spine was corrected to a little more than 30°. The goal is that the tether will continue to straighten her spine as she grows.

“If Gracee had walked into my clinic with a 30° curve, she would not have gotten surgery because 30° isn’t big enough,” Dr. Brooks says. “In the end, if nothing changes, it’s still a win because she has a curve that is stable. There are lots of kids walking around with 30° curves who are living full, successful lives.”

Hunter says that they would be happy if her curve stayed where it is and ecstatic if it improves even more. “We’re just fortunate that we’re talking about a scoliosis curve that is manageable,” Hunter says. “When you see what other families at Scottish Rite are dealing with and the care that you see being administered to them, it’s as close to heaven on earth as you think you’ll ever see.”
 
“Everyone works so hard to make the kids at Scottish Rite feel at home, to make me feel at home,” Gracee says. “I wasn’t scared to be the first kid at Scottish Rite to get The Tether™. I like being groundbreaking. I like being the first.”
 
“And, our experience at Scottish Rite,” Hunter says, “has been nothing but first-class.”

Read the full issue.