Share Your Story: The Journey of a Scoliosis Patient

Share Your Story: The Journey of a Scoliosis Patient

Meet Peyton, a spine patient who had surgery to correct her scoliosis. Peyton was diagnosed with adolescent idiopathic scoliosis (AIS) at age 14. Learn more about her journey below. 

Blog written by Peyton, age 21 of Frisco. 

Hi y’all! I’m Peyton and in honor of Scoliosis Awareness Month I am sharing my story with adolescent idiopathic scoliosis (AIS) at Scottish Rite Hospital. I’ll take you through my journey, beginning with diagnosis, my decision to have spinal fusion surgery and ending with recovery and where I am today.

My diagnosis process was actually a bit peculiar, as other hospitals and treatment centers that assessed my spinal curvature diagnosed the asymmetry they were seeing as “overdevelopment of muscle” on one side of my back. I was an all-star cheerleader/competitive athlete for 13 years growing up, and I was a flyer. For those who aren’t familiar with the sport of cheerleading, a flyer is the athlete in the air that executes body positions on the hands of the bases who are holding them up. Initially, the statement of “overdevelopment of muscle” seemed feasible, as I was consistently working and stretching one side of my back with little time and attention spent on the other side. The diagnosis wasn’t settling right with my mom. Additionally, my best friend’s mom, who also has scoliosis, was the first person to catch and actually call this so-called ‘overdevelopment’ scoliosis.

 

This confirmed my mom’s suspicions, so we met with my childhood pediatrician who referred us to Texas Scottish Rite Hospital for Children in Dallas, where I was diagnosed with adolescent idiopathic scoliosis at age 14 by Dr. Brandon Ramo.

Peyton and dad x ray_2

Once diagnosed, my treatment plan began immediately with bracing. I will be honest, as an athlete and highly active teen who was involved in numerous school organizations, school cheerleading, school athletics and all-star competitive cheerleading, the idea of being limited by bracing was not easy for me to wrap my head around. The goal was to be in the brace for at least 18 and up to 22 hours a day. If memory serves me correctly, upon hearing this, I immediately started crying. I thought this meant that I was going to have to stop cheering and, seemingly, everything else that I was involved in. At that point, Dr. Ramo discussed with me that time spent in the brace was an important goal, but I didn’t have to stop doing my activities. 

In his expert opinion, he credited the reason that my body didn’t physically reflect what was going on internally was because I was an athlete training at an elite level, thus, developing an extremely strong core. Physically, my body did show evident signs of scoliosis, such as what is commonly referred to as “the hump” on the right side of my back, uneven shoulders and a short torso, but nothing like what is commonly seen in patients who are not training at the level that I was. 

Fast forward four years. I had just turned 18 and was beginning my first year at Texas Christian University (TCU). While my all-star cheerleading career had come to an end, I was embarking on my college cheerleading journey that fall. Dr. Ramo and I agreed that because my growth plates were now closed, there was no need to brace while in college. The plan was to watch my curve and see if it progressed even after my growth plates had closed. Unfortunately, my curve did continue, officially making me a candidate for spinal fusion surgery. As you can imagine, this was not the greatest of news. From the second I was diagnosed, I had been adamantly against surgery, and told my mom time and time again that I would never even consider it. 

Peyton
Dr. Ramo knew this. He also knew I wasn’t in pain and my condition wasn’t preventing me from living my dream and achieving my goal to cheer for a Big 12/Division 1 university. Our plan, at that point, was to monitor my curve throughout the next year. Dr. Ramo was careful to make certain that I understood the big picture while still giving me personal space to make my own informed decision. He communicated his opinion, which was that I would benefit greatly in the long run by electing to have the surgery. He told me to come to him when I was ready to entertain surgery as an option for myself and/or when my cheerleading career was finished – then we would talk.

Almost one year to the date later, I had what I call a “come to Jesus” moment. A light went off in my head and I just knew. I knew my body was changing. I knew, for the first time ever, that my body was physically reflecting what was taking place internally. I knew I needed the surgery. So, one month before the end of my sophomore year at TCU, I called my parents and asked them to schedule a consultation for surgery. When I arrived for my appointment in May 2016, there was a note on my chart that said “consultation.” When Dr. Ramo walked in and saw this, he thought it was a mistake. I told him it wasn’t, and I was ready. Being the miracle worker that I believe him to be, he scheduled my surgery for June 15, 2016.

I arrived for surgery early on the morning of June 15, 2016. My surgery was approximately six and half hours long with zero complications. The early morning hours on the day after surgery were a bit rough as they transitioned me from IV pain meds to oral. My team of nurses took absolute perfect care of me.

They were extraordinarily compassionate, while still making sure to keep me on track in terms of movement. I stayed in the hospital for three days and went home on day four after my procedure. Once I was home, I stopped taking all narcotic pain medications and, instead, alternated between hospital doses of Advil and Tylenol.

 

I also relied heavily on pillows, lots and lots of pillows, that helped prop me up and keep me comfortable while sitting or lying down. I highly recommend a wedge pillow for ease of getting in and out of bed.

Peyton and nurse pre op_1

My biggest tip is to move as much as possible during the day, especially if you feel yourself getting uncomfortable, and even during the night when you wake up to take medicine. It helps the muscles in your back not stiffen up so much as your body gets use to the new you. My recovery was just as my surgery, completely complication free. For this I will be forever grateful.

I believe that choosing to get spinal fusion surgery is the best decision I will ever make for myself. I know that’s a huge statement, but I whole-heartedly stand by it. My body is far better aligned now. Clothing fits me better. I am no longer self-conscious about the physical aspects of scoliosis, and as a matter of fact, I’m quite proud of my scar! It has been amazing to see how my body has changed and adjusted to how it’s supposed to be post-surgery. Physically, I can do absolutely anything I could before, other than pulling elite cheerleading body positions or yoga positions that require a lot of back arch flexibility.

To the entire staff at Scottish Rite Hospital, the gratitude I have for you is difficult to communicate. Thank you for giving me a body that will be physically capable of doing absolutely anything that I want to do for the rest of my life.
I celebrate two years since my surgery today, June 15, 2018!

 

Do you have a story? We want to hear it! Share your story with us. 

#SRHaccess Facebook LIVE Recap: MAGEC Rods

#SRHaccess Facebook LIVE Recap: MAGEC Rods

On this week’s Facebook live, Amy L. McIntosh, M.D. joined us to discuss MAGEC rods – an innovative treatment used for early onset scoliosis (EOS). Below is a recap of the conversation.

What is a MAGEC rod?
A MAGEC rod is a growing device technique used for patients diagnosed with early onset scoliosis (EOS) – children under the age of 10. This is a less invasive, innovative treatment which reduces the amount of surgeries a child must undergo.

Qualifications for MAGEC rod treatment:

  • Children diagnosed with early onset scoliosis.
  • A curve approaching 50 degrees and other forms of treatment (i.e. bracing, casting) have not been successful.

What medical tests are done to determine the severity of a curve?

  • Scottish Rite Hospital has an advanced imaging technology call the EOS machine. The system produces long length images of the spine with significantly less radiation than other imaging tools.
  • Based off the x-ray, the curve is measured by your doctor to determine the degree.

What happens after the rod is placed?

  • After surgery, a patient will stay in the hospital for three to five days on average.
  • The back must heal from the surgery and after four to six months, the patient will return to clinic for his or her first lengthening session.

How is the MAGEC rod lengthened?

  • Your doctor will use a magnetic wand to locate the magnets in the rod and will make a mark on your back.
  • An External Remote Control (ERC) is the device used to expand the rod in your back. The device can make a loud noise, but our Child Life team is there to make your child feel as comfortable as possible.

Can the child be active while having the MAGEC rod?
•    Our doctors support patients being active and staying healthy.
•    Recommended activities include: biking, swimming, walking and hiking while having the MAGEC rod.

Watch this segment on Facebook.

Ayalin’s Moment – Scoliosis

Ayalin’s Moment – Scoliosis

In or out of halo traction, Ayalin dazzles. Even a diagnosis of scoliosis couldn’t dampen her enthusiasm. After corrective surgery at Scottish Rite Hospital, Ayalin embraces every moment, especially those that include dance. This month, we will be giving you a deeper look at Sarah M. and Charles E. Seay/Martha and Pat Beard Center for Excellence in Spine Research on our Facebook page in honor of #ScoliosisAwarenessMonth. Join us for patient stories, flashbacks and interesting facts. For more information, visit our Scoliosis & Spine page.
JohnMichael’s Story: A Sign of Hope

JohnMichael’s Story: A Sign of Hope

Rainbows served as beacons, guiding the way on a family’s journey to hope, healing and Texas Scottish Rite Hospital for Children

He has been described as light, love and joy.

His zest for life is magnetic. People call him a miracle. Meet JohnMichael. And when you do, don’t underestimate him. He has endured more trials and storms in his 17 years than most people do in a lifetime. Fortunately, after a storm in 2015 the first of many rainbows appeared, divinely timed and affirming that JohnMichael and his family would soon be on the right road to a place of hope. The journey for Houston-area couple Johnnie and Mike Morman began abruptly on August 23, 1999, when Johnnie was 26 weeks pregnant.

“We knew it was a complicated pregnancy,” Mike explains. “Our doctor told us, ‘We need to deliver the baby,’ and we were thinking in a couple of weeks, and she said, ‘No, today.’ ”

JohnMichael would not survive if he was not delivered but would only have a 10 percent chance of surviving if he was.

“JohnMichael is the embodiment of miracles,” says Shawna, Mike’s sister. She and her husband, Tim, and their children, Jason and Melissa, have been by JohnMichael’s side since he came into the world that day kicking and screaming at an astonishing 11 ounces.

JohnMichael has endured numerous physical challenges in his young life but it was the severe and rapid onset of scoliosis at age 15 that led his family to Scottish Rite Hospital.

In 2014, his parents began to notice a subtle change in JohnMichael’s normally sunny disposition and a physical change in his back. Fueled by an adolescent growth spurt and a neuromuscular imbalance, related to his preexisting cerebral palsy, he had a curvature in his spine that was progressing at an alarming rate.

The couple immediately sought medical opinions in Houston and had not yet learned about Scottish Rite Hospital.

“They were told they should go home and enjoy the time they had left with him,” his aunt, Shawna, recalls. “They gave them no hope.”

That’s when the rainbows began to appear.

“We were experiencing some difficult times,” Johnnie says. A family friend encouraged them to seek another opinion from a local orthopedist who was a longtime friend and advocate for Scottish Rite Hospital. From that meeting, the family learned more about the hospital and its expertise in treating scoliosis. “After that visit, we were sitting outside praying for guidance when we saw a double rainbow. We both felt it was an affirmation.”

Upon entering Scottish Rite Hospital on November 20, 2015, for their first visit, the family was immediately put at ease. Volunteers extended a warm greeting and guided them to their appointment with staff orthopedist Amy L. McIntosh, M.D., who evaluated JohnMichael’s curvature.

“I told them I could fix it but it would be a long journey, and they said, ‘That’s hope,’ ” McIntosh recalls.

“When she told us that she could help our son, it was like a weight had been lifted off of us,” Mike says. “We were looking for hope and we found it at Scottish Rite Hospital.”

The next step was for JohnMichael to be evaluated by a multidisciplinary group of medical specialists, which just happened to be called the Rainbow Team. The group represents Scottish Rite Hospital’s collaborative approach to patient care. Experts from departments throughout the hospital combine forces to develop an individualized treatment plan for the unique needs of each child.

“Scottish Rite Hospital takes an approach that is so patient-centered,” Mike says, “from nutrition, to surgical, to emotional and physical.”

Later, when the family was escorted to see the surgery unit, elevator doors opened to reveal a rainbow painted on the wall. “OK, this is where we are supposed to be,” Johnnie recalls saying.

Two months later, JohnMichael underwent halo gravity traction, in which a metal ring is surgically affixed to the skull and attached to a cable that suspends the body vertically from a metal frame. While it may look painful, this procedure actually provides the patient comfort and relief almost immediately, by removing pressure on the spine and gently stretching it.

“He could breathe better,” recalls his cousin, Melissa. “Physically, mentally, he literally opened up.”

After five months of traction, JohnMichael underwent a second surgery to remove the halo and address surgical adjustments to his spine. As a result of his successful scoliosis treatment, he gained 17 pounds, five inches in height and so much more.

“Scottish Rite Hospital gave JohnMichael his life back,” Shawna says, “and gave Mike and Johnnie their life back, too.”

When asked what they tell others about the hospital, the couple bursts into joyous laughter. “We tell everyone about Scottish Rite Hospital!” Johnnie exclaims.

“This hospital is phenomenal and the staff is incredible, in every area,” Mike adds. “They become your family.”

From Security to Dietary and everywhere in between, JohnMichael makes the rounds to visit members of his extended hospital family during each visit. Shouts for his pal “Super Dave!,” patient care tech David Calles, echo in the halls.

“The care is so genuine. His experience at the hospital has changed him,” Mike says. “We’ve been through our share of medical facilities and there’s nowhere like this.”

Family, friends, church and their faith have been tremendous sources of support for JohnMichael and his parents throughout their journey.

“In the storms of life, God gives us a rainbow of hope,” Johnnie says, “and for us, that was Scottish Rite Hospital.”

Watch JohnMichael’s story here.

L. Ray Lawson, M.D., International Spine Fellowship: Educating Medical Professionals from Around the World

L. Ray Lawson, M.D., International Spine Fellowship: Educating Medical Professionals from Around the World

At Texas Scottish Rite Hospital for Children, we are dedicated to education. The hospital offers several fellowship programs to provide a well-rounded experience for medical professionals interested in pediatric orthopedics. As an institution, it is a privilege for our doctors to have the opportunity to train individuals from all over the world.

One of the renowned programs at Scottish Rite Hospital is the L. Ray Lawson, M.D., International Pediatric Spine Fellowship. This fellowship is in honor of L. Ray Lawson, M.D., for his many years of commitment and dedication to the treatment of pediatric spine disorders. This program is available to postgraduate surgeons who have completed an orthopedic residency. It provides the recipient with the opportunity to rotate, observe our orthopedic surgeons,  and work on a spine-related research project.

Recently, a recipient of the L. Ray Lawson, M.D., International Pediatric Spine Fellowship, has completed his time at Scottish Rite Hospital. Ali Parsa, M.D., traveled to Dallas, Texas, from Mashhad, Iran, to spend six months learning from the best in pediatric orthopedics. He worked closely with the Chief of Staff, Daniel J. Sucato, M.D. and Steven Sparagana, M.D., and the spine research team on a neuromonitoring study for Adolescent Idiopathic Scoliosis (AIS). “This program allows the fellow to receive comprehensive training in spinal disorders”, says Assistant Chief of Staff Karl Rathjen, M.D. “It is an honor to have medical professionals traveling from around the world to train at Scottish Rite Hospital – the exchange of ideas enriches all of us and extends the reach of the cutting edge knowledge developed here in Dallas.”

Although Scottish Rite Hospital was a short stop for Dr. Parsa in his medical career, he will be able to take what he has learned back to Iran to continue his research and develop innovative techniques for treating spine disorders. It is an honor to educate physicians like Dr. Parsa, and all of the past and future recipients of this fellowship, to bring better care to children all over the world.

D Magazine: Texas Scottish Rite Hospital Receives $7.5 Million in NIH Grants for Idiopathic Scoliosis Research

D Magazine: Texas Scottish Rite Hospital Receives $7.5 Million in NIH Grants for Idiopathic Scoliosis Research

Texas Scottish Rite Hospital for Children researchers recently received three awards from the National Institutes of Health to fund idiopathic scoliosis research, the most common type of scoliosis which appears around ages 10 to 15. The grants total approximately $7.5 million.

Scottish Rite Hospital received the first award from the Eunice Kennedy Shriver National Institute of Child Health and Human Development. It will fund a multi-site program titled “Developmental Mechanisms of Idiopathic Scoliosis” to understand the biological causes of idiopathic scoliosis in order to develop future treatments. Scottish Rite Hospital Director of Molecular Genetics and Basic Research Dr. Carol Wise will lead the program and work with investigators at Washington University in St. Louis and the University of California, San Francisco.

The second award was received from the Gabriella Miller Kids First Pediatric Research Program administered by the NIH. The grant will fund the “Genomics of Orthopedic Disease” program, led by Dr. Jonathan Rios, to sequence genomes of approximately 400 members of families with a history of scoliosis. The 124 million megabytes of genomic data generated from the project are expected to identify genetic errors causing idiopathic scoliosis.

NIH also granted Wise additional funding for an international meeting to bring researchers and physicians together who are committed to treating and curing idiopathic scoliosis. The meeting, titled “Genomic Approaches to Understanding and Treating Scoliosis,” will be held March 16-18 at Scottish Rite Hospital in Dallas.

Wise says Scottish Rite Hospital researchers are honored and excited about the discoveries they hope to make with the funds. “I’m proud of the progress our team has made as we research the treatment and possible prevention of scoliosis in the future,” Wise said in a statement to D CEO Healthcare.

Read the full story at D Magazine.