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Share Your Story: A Family Affair

Share Your Story: A Family Affair

by | Sep 9, 2021 | Scoliosis & Spine

Meet Anna and Ellen, patients seen by our multidisciplinary team of experts. Learn more about their journey below.

Blog written by Anna and Ellen’s mom, Keeley.  

When our daughter Anna was 5 years old, she started telling us that her left arm felt funny and not right, so we took her to be seen at our local hospital in Oxfordshire, England. She had X-rays taken, and we were told all was well, so we continued on with our life. Our family was in the middle of packing and preparing for a move, a less-stressful life on the Isle of Man just off the U.K. mainland.

After being in our new home about four weeks, one day Anna came home from school really upset, saying that her arm was in a lot of pain. I immediately took her to another doctor to have it re-examined. I could tell this doctor was concerned, and he instantly referred us to see another specialist the very next day. At that appointment, our lives were changed forever.

We learned the devastating news that Anna’s X-rays actually showed a very large tumor, from her left shoulder down to her elbow. He advised us to move straight back to Oxfordshire, so she could be under the care of an oncology team. After a whirlwind couple of weeks, we were back in Oxfordshire, and Anna started her very long journey of chemotherapy and other treatments for her Osteosarcoma bone cancer.

patient sitting on a chair

In May 2017, on her 6th birthday, she had a surgery to remove the tumor. The cancerous humerus bone was taken out and replaced with the fibula from her right leg. Many months of rehabilitation followed, but by May 2018, Anna was in remission. Unfortunately, this was short lived, and by December, she once again had that “funny” feeling in her left shoulder. Investigative scans confirmed a recurrence.

Further surgery and many more months of chemo followed. It was devastating telling her she had to go through it all again, and lose her beautiful new hair. But Anna is a real fighter and a true inspiration to all. She persevered through treatment to make it back into remission for the second time.

Her father and I researched every possible option to try and keep this beast at bay. In August 2019, she was accepted onto a clinical trial at Memorial Sloan Kettering Cancer Center in New York. Our wonderful friends and small community of Chipping Norton in England rallied together. A Team Anna fundraising campaign took off, and many celebrities, pop stars and kind-hearted generous people joined in to help raise the huge amount of funding needed to get Anna to New York. By January 2020, we had made it, and Anna was able to start the treatment.

Just as we were about to leave for New York, life threw us another challenge. Our 13-year-old daughter Ellen was diagnosed with scoliosis and needed spinal fusion surgery. It was very difficult to come to terms with another one of our children having medical problems. The NHS doctors in the U.K. were unable to treat it within the necessary timescales. Even if we could somehow have managed to have the surgery done privately in the U.K., our family would have been separated for many months while my husband and I both took care of the girls, in different countries.

mirror selfie
Having Ellen’s spinal surgery done in New York wasn’t an option due to the huge costs involved. We were at a complete loss about what to do.

Once we arrived in New York, we serendipitously crossed paths with a wonderful woman, who just so happened to be a nurse at Scottish Rite for Children. We began talking, and before we knew it, Ellen had an appointment with Dr. Sucato. Our family was taking a road trip to Texas.

Ellen had a consultation with Dr. Sucato, and we scheduled her spinal fusion surgery. His entire team was wonderful, and we couldn’t actually believe all of this was happening! She underwent successful surgery in July 2020, and with the support of Dr. Sucato and his fabulous team, she is doing great.

Just as we were due to return home to England, we had another unbelievable turn of events. Anna had a fall at a swimming pool and broke right through the new bone in her arm. Another terrifying ordeal, but yet again, Scottish Rite came to our rescue. Anna was able to be seen by Dr. Oishi. She underwent surgery, where metal plates and brackets were inserted into her arm, and the blood supply was stimulated. Anna was also able to talk through things with Dr. Herge in psychology. Both Dr. Oishi and Dr. Herge are incredible members of Scottish Rite’s formidable team, and we are incredibly thankful for them!

 

At every turn, our entire family felt like we were being taken care of. Each and every person we interacted with at Scottish Rite genuinely cares and only wants what is best for the patient.

Following a period of rehab and checkups, our family was able to return home to England with two very healthy, strong and happy daughters. It was amazing to be back under one roof with our oldest daughter, who had stayed in England this entire time. Words cannot express how eternally grateful, thankful and overwhelmed we are with the care, kindness and support we have received. Thank you Scottish Rite. You’re the best!

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Detecting and Treating Scoliosis

Detecting and Treating Scoliosis

by | Jun 3, 2021 | Scoliosis & Spine

Content included below was previously presented at the 2021 Pediatric Orthopedic Education Symposium by pediatric orthopedic surgeon Megan E. Johnson, M.D.

People hear the term scoliosis often, but they may not know what it means. Pediatric orthopedic surgeon Megan E. Johnson, M.D., walked through each phase of detecting and treating scoliosis in a recent lecture. This summary provides health care professionals with a succinct summary and language to navigate the steps and conversations with patients presenting with suspected scoliosis.

Watch the full lecture or download this summary

Defining scoliosis
Scoliosis is a structural lateral rotated curvature of the spine. For a condition to qualify as scoliosis, the Cobb angle, or the measurement of the degree of side-to-side spinal curvature, must be a minimum of 10 degrees. If the Cobb angle is less than 10 degrees, it is considered a spinal asymmetry, not scoliosis.

What are the types of scoliosis? 

  • Idiopathic scoliosis: The most common type of scoliosis. Idiopathic means that all other causes of scoliosis have been ruled out.
  • Congenital scoliosis: When vertebral malformations cause a curvature of the spine. The vertebrae weren’t formed correctly or haven’t separated from the other surrounding vertebrae correctly.
  • Neuromuscular and syndromic scoliosis: Occurs in patients with underlying neurologic disorders like cerebral palsy, spina bifida and other genetic conditions.

What age is scoliosis diagnosed?
Scoliosis may be diagnosed at any age, but earlier recognition often improves treatment options and outcomes. A patient’s age also helps to define the type of scoliosis that they may have.

  • Infantile idiopathic scoliosis: patient is between 0 and 3 years old at the time of diagnosis.
  • Juvenile idiopathic scoliosis: patient is between 4 and 9 years old at the time of diagnosis.
  • Adolescent idiopathic scoliosis: patient is 10 years or older at the time of diagnosis.

The most common type is adolescent idiopathic scoliosis (AIS). The patient’s curve typically goes to the right and can include either the thoracic or lumbar spine or both.

What history and physical exam findings are important with scoliosis?
In order to evaluate patients, it is important to learn if patients have had back pain, headaches, other neurologic symptoms or a family history of scoliosis. For girls, it is also necessary to know their menstrual history to gauge where they are in their growth cycle.

The physical exam is focused on identifying asymmetries in static posture. This includes:

  • Differences in shoulder height.
  • Scapular asymmetry – scapulae are at different heights or one is more retracted.
  • Pelvic obliquity – iliac crests are at different heights.
  • Trunk shift – drawing an imaginary line from the patient’s head to their waist and seeing if the head is centered over their waist.
  • Waist asymmetry – a visible bulge (typically on left) on the convex side of a lumbar curve, and crease on the concave side of the curve.

Special test
A very common test for scoliosis that most people are familiar with is the Adams forward bend test. Patients bend forward at the waist, and the examiner looks for signs of rotational deformities. Curves in the coronal plane cause rotation in the axial plane, which are visible in the Adams test. For example, a left midline lumbar prominence and the prominence of the right ribs are evident with a right thoracic curve.

Neurologic exam
A thorough neurologic exam assesses for asymmetries and changes in sensation, reflexes and motor function in the trunk and lower extremities. The patellar tendon, the Achilles tendon and the abdomen are tested to look for symmetry in reflexes. Being hyper-reflexive is fine when it is present on both sides. If there are reflexes on one side and not the other, it is an abnormal finding. Foot abnormalities, like a cavovarus foot or a significant flat foot on just one side, may indicate an underlying neurologic concern.

What radiologic imaging is used to diagnose scoliosis?
Plain film radiology (X-rays)
X-rays are essential to assess the patient’s scoliosis. Full-length X-rays of the spine, including the pelvis and the top parts of the hips and femurs, will give physicians all the information that they need to determine what the curve looks like, how big the curves are and how much growth the patient has left. Full-length X-rays are necessary for final diagnosis and treatment planning. Scottish Rite for Children uses advanced imaging technology called EOS, which utilizes a very-low-dose radiation for efficient and effective full-length images. To avoid unnecessarily repeating X-rays, images are not required for referrals for suspected scoliosis.

Advanced imaging
An MRI is indicated with these findings:

  • Curve abnormalities like a left-sided curve, a back that is rounder than expected or an abnormal appearing curve.
  • Short and sharp curves and kyphosis are red flags requiring further evaluation with an MRI.
  • Abnormal neurologic exam or other neurologic symptoms, like daily headaches.
  • Significant progression in the patient’s curve between follow-up appointments.

What factors are considered in planning treatment for scoliosis?
The goal of scoliosis treatment is to keep the spinal curve(s) as small as possible and prevent progression to surgery. The following are considered:

  • Age of the patient.
  • How skeletally mature they are.
  • Size of the scoliosis curve(s).

Bracing
Bracing is recommended for patients with curves between 20-25 and 40 degrees if they have at least two years of growth remaining. Thoracic lumbar sacral orthosis (TLSO) braces are worn 18 to 20 hours a day and are typically used for curves in the thoracic spine or both the thoracic and lumbar spine. If the patient only has a lumbar curve that is flexible, nighttime bracing may be recommended.

Surgery
Surgery is recommended when the patient’s curve has a Cobb angle of 50 degrees or more to prevent the curve from progressing into adulthood. Surgery is generally not recommended until the patient is at least 10 years old because if the fusion is done too early, the growth of the patient’s spine can cause some secondary issues.

When should a patient with suspected scoliosis see a pediatric orthopedic specialist?
Patients should be referred to Scottish Rite for Children:

  • If they have a scoliosis curve and are still skeletally immature.
  • If they are fully grown with a significant deformity that is visible in the clinical exam.
  • If they have a scoliosis curve with an abnormal neurological exam, chronic back pain, daily headaches, an asymmetric foot deformity or any other unusual symptoms.

Many patients evaluated at Scottish Rite for Children do not have scoliosis, but our team provides reassurance and recommendations for monitoring over time. Annual or six-month observation visits are indicated for some patients since curves change as the patient grows.

Are you interested in learning more? Visit our on-demand page for more educational opportunities including scoliosis and orthopedic topics.

Luke’s Journey: Not Missing a Beat Through Scoliosis Treatment

Luke’s Journey: Not Missing a Beat Through Scoliosis Treatment

by | Mar 26, 2021 | Scoliosis & Spine

Cover story previously published in Rite Up, 2021 – Issue 1.

by Hayley Hair

The rhythm, the tempo, and the heartbeat — all fitting descriptors for the function of a band’s percussion section, but using an even more compelling name like the backbone depicts their role more succinctly. Just like a spine, all those sharp pops of the quad drums, the satisfying crashes of the cymbals, and the low, palpable rumbles of the bass drums provide stability, support, flexibility, and movement to the ensemble. No one knows this juxtaposition more personally than Luke, the McKinney North High School bass drum percussionist and Scottish Rite for Children patient cared for by our scoliosis experts.

Plenty can be learned about adolescent idiopathic scoliosis (AIS) by following Luke’s journey. AIS, or scoliosis with an unknown cause starting after age 10, makes the spine curve or twist into a “C” or “S” shape. Luke’s personal experience covers the broad spectrum of how the progressive condition is diagnosed, observed, and expertly managed with an individualized treatment plan.

“Luke’s pediatrician identified the minor curvature of his spine and uneven shoulders at his 9-year-old well visit,” Luke’s mom, Christy, says about the outset. “The pediatrician immediately referred us to Scottish Rite, and the initial plan was to monitor Luke every six months to identify any changes that may occur.”

Scoliosis Observation and Expertise 
Luke and Christy’s first visit at Scottish Rite for Children was with Amy L. McIntosh, M.D., medical director of clinical safety and a pediatric orthopedic surgeon. “I think that’s one of the greatest things about Scottish Rite — we have so many treatment options for scoliosis,” McIntosh says about the expertise and exceptional care the institution offers.

Clinical observation might not seem like much of an active plan at first, but consistent monitoring of the child’s growth is key. Catching any progression in spine curvature is crucial for effectively managing scoliosis. Christy, a registered nurse, is the coordinator of health services for McKinney Independent School District, which serves more than 23,000 students in North Texas. She has experience with AIS through her work with state-mandated scoliosis screenings in school as well as training other health professionals about the condition, so McIntosh and Christy are on the same page about early detection. “Scoliosis screening is very important.” McIntosh says. “Catching a curve early, when it is small, is the most important factor when it relates to brace treatment success.”

A Brace Just for Luke 
As Luke continued to grow, unfortunately, so did his curve. McIntosh first prescribed a Providence brace, or a nighttime brace made for smaller curves, for Luke to wear while he slept that would help to slow his curve progression. “I thought it would just go away like a sickness, like braces for your teeth,” Luke says.

His new brace, along with all of Scottish Rite patients’ braces, is custom-made for his curve. “The coolest thing about our bracing program is that the orthotists work at Scottish Rite, and they make all the braces in-house,” McIntosh says. “If you are going to wear a brace, it might as well work really well for you.”

And during each patient’s clinic visit, the multidisciplinary care team specific to the child’s condition is nearby. “We have the orthotists with us, the nursing team, physicians, the physical and occupational therapists — everybody’s ready on hand in the clinic to provide the best comprehensive care for each patient,” Chief of Staff Daniel J. Sucato, M.D., M.S., says. As director of the Sarah M. and Charles E. Seay/Martha and Pat Beard Center for Excellence in Spine Research, Sucato leads an institution-wide team that focuses on researching the cause and behavior of scoliosis in children and adolescents and controlling and correcting curve progression with innovative treatments.

More Hours in the Brace
As Luke kept growing, again, so did his curve. McIntosh had more in her arsenal and upped his support to a custom thoracolumbosacral orthosis (TLSO) brace. Made for wear under clothing day and night, the TLSO brace wraps around the upper body from under the arms to the pelvic bone. Luke’s curve affected both the upper, or thoracic, and the lower, or lumbar, regions, creating a twisted “S” shape.

Patients, like Luke, wear their braces for 18 to 24 months for many hours a day. That timing is determined by the age at presentation, the curve magnitude, and how much growth remains. “Currently, the brace is the only treatment that has been scientifically proven to prevent the progression of scoliosis to a surgical magnitude,” McIntosh says.

Correcting Scoliosis with Surgery
“He wore his brace until the ninth grade, and he was so compliant,” Christy says. “He even tried to wear the brace while he was in marching band while carrying  the bass drum, but he couldn’t. It was too much, so  he started taking it off for band.”

Luke literally and metaphorically carries the beat on his back while he zigs and zags across the football field holding his enormous bass drum. Fastened to a frame that hooks over both shoulders, the drum weighs more than 20 pounds and juts out far enough to move when the wind blows. Luke loves to be a part of the drumline, and when asked if he plans to continue studying music in college, he replies, “100 percent.” Some of his best friends are in the band. “It’s a great way to meet people, and I’ve made close friends that will probably last quite  a while,” Luke says.

Luke wore his brace up to 22 hours a day, but his curve kept progressing. When his curve grew to more than 50 degrees, surgical correction was recommended. Luke experienced some discomfort and breathing difficulty as well. “When it was really bad, like after band practice, after marching out there with my drum for a while, it just hurt,” Luke says. “I tried to get Luke’s spine through it as best as I could, X-ray before surgery but sometimes I’d have to sit out and do stretches. It wasn’t bad to the point where I couldn’t do anything, but it was just constant.”

Getting ready for surgery, Luke looked to McIntosh to explain the next steps. “She gave me a 3-D model of what the surgery would look like on my back,” Luke says. “I got to play with it and bend it to see the difference between a normal back and a back with spinal fusion. It made me feel better.”

Luke had a posterior spinal fusion with instrumentation and bone grafting, the most common scoliosis surgical procedure. By attaching rods to the spinal column and then grafting bone to the affected area, the spinal curve is corrected and encouraged to fuse to prevent further curve progression. Following surgery, the fused section is no longer flexible.

Recovery takes several months for patients to get back to their desired activities, and it takes up to a year for the spinal fusion to fully heal. During Luke’s recovery, the drumline and their teacher, Michael Reed, brought a huge card signed by everyone with well wishes during a visit to his house.

After years of wearing a brace and surgery, Luke has advice for others going through bracing and surgery for scoliosis. “If they are going through bracing, I’d tell them to wear their brace as much as possible to try to avoid the surgery,” Luke says. “If they are about to get into the surgery, don’t worry about it too much. They are professionals, and they know what they are doing.”

Luke gained a few inches in height and has no more pain following surgical correction. “It is a lot easier to do stuff with my back like this,” Luke says. Even though there are reminders each day about his spinal fusion, he says he wouldn’t change a thing about his treatment at Scottish Rite for Children. “You are in the best hands,” he says. “They know exactly what to do.”

Read the full issue.

Share Your Story: Hole in One

Share Your Story: Hole in One

by | Jun 2, 2020 | Scoliosis & Spine, Uncategorized

Meet Phoebe, a patient seen by our spine experts. Learn more about her journey below.

Blog written by Phoebe’s mom, Victoria of Rockwall, TX.

When Phoebe was in sixth grade, she had her annual pediatrician visit and that was when our doctor first recommended further evaluation of her back. Phoebe’s shoulders were uneven, and she appeared to have an abnormal spinal curve. Our pediatrician recommended that we go to Scottish Rite for Children.

Phoebe became Dr. McIntosh’s patient and due to the degree of curvature in Phoebe’s spine, a scoliosis back brace was highly recommended and necessary to stop the progression of the curve. As a mother of a beautiful, young and active daughter, the news was a hard pill to swallow. We were very nervous and afraid of how the brace was going to impact our daughter’s lifestyle. Dr. McIntosh was very understanding and thorough, answered all our questions and made us, especially Phoebe, feel comfortable.

Dr. McIntosh is an expert and we felt confident that our daughter was in great hands.

That same day, we met with Kelsey in the Prosthetics department. She took measurements and designed Phoebe’s back brace. Phoebe loved all the staff and doctors but felt a special connection with Kelsey. She was funny, young at heart and spent a lot of time with Phoebe during the brace adjustments.

At that time, Phoebe was 11 years old and about to transition from elementary to middle school. It was hard to see her wear a thick plastic brace during the hot 100+ degree weather. Phoebe has always been tough, and she rarely complained. She didn’t like the brace, but she knew that it was the only option to stop the curvature progression. Many times, she would even wear it for more than the 20 hours a day that was recommended. She started with a 19-degree curvature and at the end of the process, she was at a 17-degree curvature, which was great.

As a family, we did different activities together and allowed Phoebe to try many different sports. Phoebe was able to play soccer and basketball, run track, and even participated in cheerleading – all throughout her bracing process. Dana Dempsey, the Scottish Rite Director of Therapeutic Recreation, invited us to participate in a Learn to Golf clinic. It was at this clinic when Phoebe decided to try golf and she fell in love with the sport! Through the years, she has participated in several different Learn to Golf clinics and is now on the varsity golf team at her high school. She even made the varsity team as a freshman!

We are beyond grateful for all of the staff and volunteers at Scottish Rite. Phoebe’s scoliosis experience was much brighter due to the care and love she felt, and we strongly recommend Scottish Rite to anyone else that may be going down this path.

Learn more about Phoebe’s Story and see how Learn to Golf changed her life. Click here.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Spinal Tethering Recently FDA Approved

Spinal Tethering Recently FDA Approved

by | Feb 18, 2020 | Scoliosis & Spine

Article originally published in fourth quarter, 2019 issue of the Pediatric Society of Greater Dallas newsletter. Written by Chief of Staff Daniel J. Sucato, M.D., M.S.

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In August 2019, the Federal Drug Administration (FDA) approved a new technique to treat patients with adolescent idiopathic scoliosis (AIS) known as the vertebral body tether (VBT) or “tethering” for short. The technique is mainly  for children who are still growing and whose curves are approaching or are in the range for traditional surgical treatment. It was first studied in animal models and more recently in a variety of clinical series. This short review will discuss scoliosis in general, the traditional treatments for this condition, the rationale for tethering, the early results and some perspective on its utility in patients today.

What is Adolescent Idiopathic Scoliosis?
Scoliosis comes in a variety of forms with the most common being adolescent idiopathic scoliosis (AIS), defined by scoliosis in normal patients between 10 and 18 years of age without an underlying syndrome or congenital abnormalities of the vertebrae or ribs. The “idiopathic” aspect of the title refers to the fact that we do not understand the underlying etiology for the occurrence of the scoliosis. Despite an incomplete understanding of the cause of AIS, we do recognize that curve progression occurs when children have growth of the spine (especially rapid growth) or when the curve measures greater than 50 degrees at the completion of growth. Based on these well-accepted facts, the traditional treatments for scoliosis are threefold: observation, bracing and surgery.

Traditional Treatment
We observe small curves (<20 degrees) in children who are still growing or larger curves (up to 50 degrees) in those children who are done growing. Bracing is reserved for growing children with curves between 20 and 45 degrees with the goal of preventing curve progression during their growing years and to avoid surgical treatment. Braces come in two main categories, the all-day/nighttime brace (used for all curve types) and the only nighttime brace (predominantly used for lumbar or thoracolumbar curves between 20 and 35 degrees).

Traditional surgery is indicated for curves greater than 50 degrees or for curves which will inevitably be greater than 50 degrees (i.e. a 45 degrees curve in a 10 year old who is in the middle of their growth spurt and is a Risser 0). Posterior spine implants are used to obtain correction of the spine and then to hold the spine in that position until the spine fuses. Today, surgery is exceptionally successful with very few complications or revision surgeries, and patients are often back to their full activities including athletics and sports three to six months after surgery.

What is Tethering?
The concept of growth modulation is applied in the lower extremities when a surgical procedure is used to partially limit the growth of the physis (growth plate) to improve a deformity. This has had great success for children primarily because we know the exact growth of the distal femur (1 cm/year) and the proximal tibia (0.6 cm/year). We can “tether” the medial or lateral growth plate to allow the other side of that same growth plate to improve the deformity and, when correction has been achieved, the small implants can be removed. Depending on many factors, correction occurs within six months up to a few years.

How is Tethering Used in the Spine?
This same concept has been applied to the spine in which the tether is placed on the convex aspect of the spinal curvature to slow the growth of this side of the spine, which, in theory, allows the concave aspect to continue to grow. This “internal brace” has the theoretical advantage of correcting the curve while allowing the patient to be very active, without the need to use a brace, and therefore maintains some flexibility of the spine. The tether is placed in the front of the spine using a thoracoscopic approach with four small incisions, in which a single screw is placed in each vertebral body which is then attached to a flexible tether made of polyethylene polymer. The tether is tensioned at the time of surgery to gain some correction of the curve and the patient is followed after that to monitor the spine with respect to curve correction and evidence of complications. This technique is best applied to patients who have thoracic curves (the most common curve pattern in AIS) but can also be applied to lumbar curves although this is not as well accepted and is controversial.

What are the Risks?
The theoretical advantages of the technique must be weighed against the challenges that have been seen with the follow-up of these patients and can be categorized into two main areas. Understanding the exact indications for the procedure to avoid under correction or overcorrection and avoid breakage of the tether. The indication for the tether is as an alternative for bracing.

Under Correction and Overcorrection
However, if a tether is placed in a small curve of 25 degrees in a growing child then overcorrection occurs. This happens with a reversal of the curve so that the convexity switches from the right to the left and requires reoperation for tether removal and potential treatment of this left-sided curve.

Breakage
The other risk is that the flexible tether has a relatively high chance of breaking due to the flexibility that remains in the spine. When this occurs, a revision surgery may be required because correction is no longer possible over that segment(s).

How Does Tethering Compare to Alternative Treatments? 
In this population of growing children, bracing is a highly successful treatment (>70%) without the risks of surgery. The success is of course related to the quality of the custom-made braces and requires monitoring of compliance of the brace. At Scottish Rite for Children, we use a temperature sensor in the brace  and there is now a phone app to monitor in real-time. Also, a definitive fusion procedure leads to outstanding outcomes with a very low rate of reoperation.

In summary, tethering of the spine has promise as an alternative to bracing to maintain partial spine flexibility, provide an opportunity for curve correction and potentially avoid a fusion procedure. It is important to provide a clear description of the results and complications with each patient and family prior to deciding if this technique is right for them.

Learn more about scoliosis and our research in the Center for Excellence in Spine.

Share Your Story: My Bracing Journey

Share Your Story: My Bracing Journey

by | Jun 25, 2019 | Scoliosis & Spine

Meet Mary Grace, a patient who is treated by our spine experts. Learn more about her journey below.

Blog written by Mary Grace, of Dallas. 

The first time I was told I had scoliosis was at my check-up when I was 11. I was in the fifth grade, an avid dancer and involved in choir and theater. My mom and I went into my appointment clueless of what was about to happen. Everything was going normal until my pediatrician asked me to touch my toes so she could check my spine. She was silent for a few seconds. “Umm… hold on,” she said. She brought in the other pediatrician to also look at my back. They discovered that I had a curve that was visible to the naked eye. This was not the kind of news that my mother and I were expecting to hear. We were immediately referred to Texas Scottish Rite Hospital for Children. I felt a rush of emotions – I was confused, scared and shocked. My mom told me, “Don’t worry, Scottish Rite is the best of the best and they will take great care of you.” I didn’t know it at the time, but my mom was right. Scottish Rite Hospital would later go on to provide me with five years of the best possible care.

patient smiling
A month later, I had my first appointment. We pulled into the hospital and I was immediately at ease. It had a bright, cheerful looking playground and big crayons framing the doors. Once inside, I was overwhelmed with the delicious smell of popcorn. It did not look or smell like a hospital. First, I was taken to get an X-ray and then we were put into an exam room. None of the rooms had numbers or scary names on them and I didn’t even see the words “scoliosis” anywhere. Instead, the rooms were named after fun kid things.

I immediately liked my doctor, Dr. McIntosh. She was kind, smart, fashionable and also a mom. She immediately connected with me and we began talking about our lives. After getting to know each other, she told me that I had moderate scoliosis. At that point, my curve was less than 20 degrees. I was told that for now, I only needed to be seen every six months for scans of my spine to make sure the curve wasn’t progressing. I visited Scottish Rite Hospital the summer before my sixth grade and during the middle of that year. Both times, the curve had not progressed. In fact, they told me that after my next appointment, I may be done with my treatment forever.

My next scan was scheduled for July, when I was going into seventh grade. I wasn’t at all worried since my three previous visits had all been uneventful. I had my scan and waited for Dr. McIntosh. My mom and I talked in the spacious patient appointment room, completely unaware of the impending news that would change my life forever. What happened next was shocking! The door opened, and it wasn’t just Dr. McIntosh, but a team of at least four people. Dr. McIntosh informed me that my scoliosis had progressed significantly in the past six months. My curve was now 28 degrees and I needed to be fitted for a brace right away. My mom and I both fought back tears as we were sent downstairs to the Orthotics and Prosthetics department. Our specialist, Kelsey, could not have been more kind or encouraging. She formed personal connections with me from the second she walked through the door. After a few more orthotics appointments, we even developed our own inside jokes. She scanned me for the brace and told me lots of encouraging stories about other teenaged girls who wear braces. We were instructed to come back in three weeks when my brace would be ready.

Three weeks later, I was back at the hospital to get my brace. Although it was fitted and made just for me, nothing about it felt normal. It was big, hard, very tight and even with the medical tank tops underneath, it rubbed my skin. Kelsey in prosthetics was incredibly kind and patient with me. She had me walk the halls of the hospital, practice sitting down, standing up, etc. while wearing my brace. Then, I would report back to her about where it hurt, and she would make adjustments. Sometimes I couldn’t even articulate exactly what it felt like, but she worked tirelessly to try to make that brace as comfortable as it could be. After a long day, I left the hospital feeling upset while I carried my brace in my arms because I had to work up to being able to wear it for long periods of time. I could not believe that this was going to be my new normal for the next few years. In the hospital parking lot, I saw a girl about my age who was also carrying a brace. She noticed the brace in my arm and walked right up to me.  She said, “Hi, I’m Cadence, I’ve worn a scoliosis brace for the past six years. I can give you lots of tips.” She then proceeded to tell me how she managed to stay cool in the brace at night, which undergarments worked best with it, how to adjust the tank top straps to fold over the brace to work with certain outfits, etc. Cadence was so optimistic and said all of this with a big smile. I thought, “If she can do this and still smile like that, I can do that too.” Cadence and I became pen pals and regularly texted about our scoliosis. When she came to Dallas a few months later for her scoliosis surgery, I came to visit her at the hospital.

I continued to wear my brace throughout middle school. It wasn’t easy and it wasn’t always comfortable. However, Dr. McIntosh, Kelsey and every single person I interacted with at the hospital made this journey as wonderful as it could be. 

They cheered me on, they listened to me and they offered support. 

Like Cadence, I too have been able to help younger girls with scoliosis. I like being able to share my experience and cheer them on. I smile and visit with every single person I see holding or wearing a brace in the halls. Since I am now fully grown, I no longer have to wear my brace. There is a chance I will need surgery down the road for my scoliosis. I hope not, but if I do, I know I will be in the best possible hands at Scottish Rite Hospital.

cheer dancer

While I didn’t wish to have scoliosis, the experience has made me stronger and helped shape what I want to do with my life. My journey at Scottish Rite Hospital and with Dr. McIntosh has made me want to be a doctor. I am beyond thankful for the hospital and the amazing people who work there. They have provided me with so much (including my “bionic” torso as my mom and I call it). Once you experience the community and people, you immediately want to become a part of the family. It is a special place that makes everyone feel welcome and supported. Scottish Rite Hospital has taught me that with a strong support system, coupled with a positive and open mindset, anything is possible.

 

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