Share Your Story: Cookies and Castles Connection

Share Your Story: Cookies and Castles Connection

Meet Henley, a patient who was seen by our team of scoliosis and spine experts. Learn more about her journey below.

Blog written by Henley’s mom, Lauren.

In January 2022, Henley saw a new pediatrician for her annual well child appointment. At that appointment, she was screened for scoliosis. The pediatrician noticed a curvature in her spine and referred us to a specialist. Unfortunately (or really, fortunately!), the specialist wasn’t taking new patients, and a good friend of ours urged us to visit Scottish Rite for Children.

As a parent, I felt lost, overwhelmed and a little fearful of this new and unknown venture. From the second we stepped in the door at Scottish Rite, we felt like we were at the Ritz-Carlton of hospitals. Everyone was so kind, helpful and accommodating to Henley (and to me, too!). Henley had X-rays and an MRI done, which could be very scary for an 8-year-old, but the staff were incredibly patient and understanding. 

Once Henley was diagnosed with scoliosis, she was sent to the Orthotics and Prosthetics department, where she was fitted for a brace. She picked out a pattern for the brace and has been very diligent about wearing it. Henley will continue wearing her brace until she is done growing, so we have many years of care at Scottish Rite in our future! In a time that can be daunting and stressful for families, Scottish Rite has alleviated so much pressure from our family by their kind hearts and helping hands. 

Coincidentally, a close friend of ours was a Tri Delta at SMU and throughout the years, has invited us to participate in the annual Cookies & Castles event. This wonderful event directly benefits the Orthotics and Prosthetics department at Scottish Rite. We have decorated many gingerbread houses and as we attend Cookies and Castles this year, we will be doing so with an even greater appreciation.

Scottish Rite shifted our experience from stressful and daunting to something where we feel confident and supported on our scoliosis journey. When we have appointments, I have nothing to stress about. I know that we will find all the support we need at Scottish Rite with smiling faces. Not only does Henley gets excited to come to her appointments with Dr. Johnson, but also she loves learning about the progress being made from wearing her brace. She loves checking out the fish and getting popcorn, too.

Henley is currently a third grade cheerleader and a Girl Scout Brownie. She is on the UIL Storytelling team and in Junior FFA. In the spring, she’ll play volleyball and join a tumbling class. She adores animals, including her cat Kiki and her labradoodle Tito. In her free time, she loves playing with her little sister Presley and her friends. She also loves reading, drawing and baking!

Cookies & Castles Dallas and Cookies & Castles Frisco have been long-time supporters of Scottish Rite for Children. Both events take place at our campuses in Dallas and Frisco, where friends, families and patients can decorate gingerbread houses while supporting our organization. These events have raised nearly $1 million total for Scottish Rite throughout the years! We’re grateful to the unwavering support of Cookies & Castles, the Dallas Alumnae Chapter of Tri Delta and the North Texas Area Alumnae Chapter of Tri Delta. 

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

The Psychology of Spine Surgery Pain in Children

The Psychology of Spine Surgery Pain in Children

Article previously posted on Orthopedics This Week

by Elizabeth Hofheinz, M.P.H., M. ED.
 
How catastrophic is surgical pain for children? A group of researchers from Scottish Rite for Children, the University of Texas (UT) Southwestern Medical Center, and The Chicago School of Professional Psychology (all in Texas) set out to examine pain catastrophizing in adolescent idiopathic scoliosis (AIS). Their work, “Pain Catastrophizing Influences Preoperative and Postoperative Patient-Reported Outcomes in Adolescent Idiopathic Scoliosis,” appears in the August 18, 2022, edition of The Journal of Bone and Joint Surgery.
 
“We began this work about seven years ago as we saw more adolescents having difficulty with pain postoperatively,” stated co-author Brandon Ramo, M.D. to OTW. Dr. Ramo, who is with Scottish Rite and UT Southwestern Medical Center, added, “We were able to undertake this work because we are fortunate enough to have a strong child psychology group in our hospital to partner with. The timing seems right in some ways because the pandemic has clearly accelerated the decline in mental health in our teenagers.”
 
The authors undertook a prospective cohort study of 189 consecutive patients undergoing posterior spinal fusion for AIS, comparing patients having clinically relevant pain catastrophizing with patients who had normal Pain Catastrophizing Scale scores.
 
They found that 20 patients (10.6%) engaged in pain catastrophizing. And, even though the demographic and radiographic variables were similar, the researchers determined that pain catastrophizing was associated with significantly lower preoperative scores than those in the normal pain catastrophizing group in all of the Scoliosis Research Society Questionnaire Domains: pain (2.98 versus 3.95), appearance (2.98 versus 3.48), activity (3.51 versus 4.06), mental health (3.12 versus 4.01), and total score (3.18 versus 3.84), except satisfaction (3.72 versus 3.69; p > 0.999).
 
“We showed a fairly high rate of pain catastrophizing in a ‘seemingly otherwise normal, healthy’ population of adolescent patients, 1 in 10, which means if you operate on AIS, you will encounter it at least several times per year,” commented Dr. Ramo to OTW. “These patients will finish with poorer outcomes than their peers, so if you don’t recognize this psychological trait, you can’t intervene beforehand (referral, expectation management) and their outcomes scores will be lower.”
 
“We showed good correlation with the Scoliosis Research Society Pain domain, which you could use as a proxy to detect this or use an electronic medical record (EMR)-based algorithm to deliver the Pain Catastrophizing Scale to those patients scoring below our threshold on the Scoliosis Research Society pain domain. The EMR computer can work for us to do this and identify at-risk kids with simple questions and a very simple algorithm.”
 
Time heals?
 
The good news about the paper, Dr. Ramo told OTW, “Patients with pain catastrophizing, because they start so low on their PRO scores, actually have larger increases in their scores after surgery, so while they never ‘catch up’ to their peers, they actually ‘do well’ with surgery and should still be offered these elective surgical procedures. Don’t be afraid to operate on them.”
 
“For us, this has changed our practice in that we have implemented an EMR-based process: we are now administering the Scoliosis Research Society questionnaire when we sign the patient up for surgery as a clinical tool, rather than as a research tool in the days before. We had our EMR developers build the Scoliosis Research Society questionnaire into our EMR, and using parameters from our study, if they score below a certain threshold on the Scoliosis Research Society questionnaire, the computer administers the Pain Catastrophizing Scale.”
 
“If they have a concerning pain catastrophizing score, the surgeon’s team is notified, and a consult can be placed to psychology well in advance of the surgery. This allows the patient to receive psychological support, perhaps improving expectations and maybe (that’s the next study) their outcomes.”

Read the full article.

Forbes Health: Scoliosis: Symptoms, Treatments, Mental Health Affects And More

Forbes Health: Scoliosis: Symptoms, Treatments, Mental Health Affects And More

Scoliosis is a spine condition that affects approximately 2% to 3% of the global population, according to the American Association of Neurological Surgeons. Whether you have scoliosis yourself or know someone who does, read on to learn more about the condition, its types and causes, common symptoms and treatments, how it can affect mental health and more.

Read the entire article.

Share Your Story: Oh, the Places You’ll Go!

Share Your Story: Oh, the Places You’ll Go!

Meet Beau, a patient who is seen by our team of multidisciplinary experts. Learn more about his journey below.

Blogs written by Beau and his mom, Courtney.

When Beau was 6 months old, he was placed in the Chinese orphanage system, and our family adopted him in 2017, when he was 4 years old. We did not know much about his history, as he lived in a very large orphanage and information was not passed along. We did know he would be somewhat of a medical mystery and booked his appointment with our pediatrician before we even left China.

Beau is a complex patient, and after a variety of appointments and tests, he was eventually diagnosed with a form of dwarfism called spondyloepiphyseal dysplasia congenita (SEDc) and a monoallelic mutation of COL2A1 gene. This is a rare genetic disorder that impacts different parts and systems of his body, including his eyes, hearing, spine and more.

In May 2021, Beau’s spinal curve rapidly started to increase, and that is when our orthopedic surgeon in Houston referred us to Scottish Rite for Children. We really love and trust our doctor in Houston, so it was very comforting to hear him say, ‘If my kid needed this done, where I’m sending you is where I would go. They are my number one choice.’ My anxiety as a mom went away, and I immediately started to research everything I could. We took the first available appointment and met Dr. Johnson for the first time at the end of June. She gave us a game plan for surgery, and we left with a sense of peace about the journey we were about to take with Beau at Scottish Rite.

In January 2022, Beau had spinal surgery and was in halo decompression for the next five weeks. Halo-gravity traction is the process of using a metal ring, or halo, attached to a child’s skull that applies traction to the spine, gently stretching and straightening out the spine to correct curvatures. – Courtney

I had so much fun in my halo, and my mom decorated my equipment, which made it even more fun! My walker was Mardi Gras-themed the entire time. I always had beads to hand out, and sometimes I even had a speaker playing Mardi Gras music!

My wheelchair was first decorated as the emperor’s throne, because of Chinese New Year, and I handed out handmade fortune cookies. I created all the sayings, and my mom made paper cookies. I even painted my face like a tiger, because we are in The Year of the Tiger.

For Valentine’s Day, my decorations were full of hearts, lights and sparkles. I had a cool shirt that said, ‘Just call me Cupid’ and wore an awesome red top hat with heart glasses. My mom and I made over 350 valentines, and we handed them out around the hospital. I know that there are a lot of people that are needed to make hospitals run smoothly, and I tried to meet all of them. I wanted to remind them that they are important, and I was thankful for all they did during my stay.

After surgery, I went home in a wheelchair. My farewell theme decorations were Oh, the Places You’ll Go! My mom said that this was a perfect theme to represent moving from China to the United States. Not only did I have to learn and adapt to a new world, but because of my spine surgery at Scottish Rite, I also have a new level of life, and nothing is going to hold me back!

I feel like I will be able to do anything I set my sights on, thanks to different people at Scottish Rite. The Therapeutic Recreation department allowed me to participate in sports and games that I never thought I would be able to do. My size can make sports hard, but they showed me how I could fully participate with just minor modifications.

When I was an inpatient, Ms. Dana gave me my very own Learn to Golf set of golf clubs, and we had a special visitor during therapeutic recreation – Mr. Carlos. He taught me how to play golf, plus he had a huge smile, was super nice, and has a special leg. We live near a golf course, and I have always wanted to learn how to play, but because of my size and my back, I never thought I would be able to participate. Mr. Carlos worked with me, and I learned how to make adjustments and was able to swing a golf club and hit the ball. After my big surgery, he even came to check on me. Learn to Golf will allow me to keep playing the sport and has connected me with special coaches, just like Mr. Carlos.

I am now back home in Houston and feeling good. I will always remember Scottish Rite for Children, and I look forward to my checkups because I can visit my friends all around the hospital, and they always remember my name!! – Beau

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

Innovative Spinal Surgery Techniques for Scoliosis

Innovative Spinal Surgery Techniques for Scoliosis

In scoliosis patients with a significant curve of 50 degrees or more, spinal surgery is often the best treatment option. Surgery is also an option for scoliosis patients who did not achieve success with bracing. At Scottish Rite for Children, we offer multiple types of surgery to correct scoliosis including spinal fusions, as well as new and innovative methods like vertebral body tethering (VBT) and the magnetically controlled growing rods, also known as MAGEC rods, for children that are still growing.  Learn more about the different types of spinal surgery offered at Scottish Rite below.

Spinal Fusion
The most common surgery performed to treat scoliosis is called a spinal fusion. In a spinal fusion, the curved vertebrae are fused together to create a single, solid bone. This stops the growth in the abnormal part of the spine and prevents the curve from worsening. Metal rods attached by screws are used to hold the spine in place until the bone heals. In all spinal fusions, a bone graft is used to help promote the fusion and the bones grow together to create one solid bone.

  • Patients who have a spinal fusion will see an immediate improvement in the curve of their spine. This surgery also prevents the spine’s curve from progressing over time.
  • Most patients have a recovery period of about six weeks, during which some activities like bending or heavy lifting must be limited.
  • Following a spinal fusion, most patients can return to their normal activities after recovery, which usually is about four to six months.
  • In most cases, patients who undergo a spinal fusion do not require any additional surgeries.

Vertebral Body Tethering (VBT)
VBT is a surgical treatment for idiopathic scoliosis in growing children. This surgery technique uses a strong, flexible cord that is attached to the spine with screws and anchors and as a child grows, their spine will straighten over time. The cord encourages the spine to straighten as the patient grows. Vertebral body tethering is a growth modulation treatment that takes advantage of the spine’s natural growth. Growth modulation means modifying the normal growth patterns through tethering. The tether is placed along the curved side of the spine. This tether is used to slow down the growth of the curved side of the spine while the untethered side continues to grow. By using a tether, the spine can continue to bend and flex. It is not a fusion procedure which is an advantage of pursuing this treatment.

  • VBT is an ideal treatment for children with idiopathic scoliosis who have curves of 30 to 65 degrees and who have significant bone growth remaining.
  • Unlike a spinal fusion, VBT allows for greater mobility and flexibility of the spine.
  • VBT surgery is less invasive than a spinal fusion and involves a shorter recovery time. In most cases, patients can return to most activities within three to four weeks after the surgery.
  • Unless a concern with the tether develops, the implants will not need to be removed once placed by the surgeon.

MAGEC (MAGnetic Expansion Control) System ®
A MAGEC rod is a growing device technique used for patients diagnosed with early-onset scoliosis (EOS) – children under the age of 10. In comparison to a spinal fusion, this is a less invasive, innovative treatment that reduces the number of surgeries a child must undergo. Once the surgery has been performed and the MAGEC rod is in place, the back must heal for about four to six months. Once the spine has healed, then the patient will return to the clinic for his or her first lengthening session. During lengthening, the physician will use a magnetic wand to locate the magnets inside the MAGEC rod and make a mark on the back. Using an External Remote Control (ERC) device, the doctor will then lengthen the rod with a noninvasive adjustment. An X-ray or ultrasound of the spine is then used to confirm the procedure’s success.

  • The MAGEC rod is ideal for patients under the age of 10 who have a curve approaching 50 degrees and other forms of treatment (i.e. bracing, casting) have not been successful.
  • Children may need several lengthening sessions over time to achieve proper results.
  • During the ongoing lengthening sessions, children may remain active and continue all their favorite activities.
  • Lengthening sessions do not typically cause pain and additional surgeries are not usually required.

Each surgical technique has different uses and not all types of surgery will be the right fit for every patient. It is important to discuss all treatment options with your doctor to learn what will work best for your child.

Learn more about scoliosis treatment and surgery at Scottish Rite for Children.

Myths About Scoliosis: Causes & Treatment

Myths About Scoliosis: Causes & Treatment

What is Scoliosis?
Scoliosis is a progressive condition that causes the spine to curve into an “S” or “C” shape. It affects approximately two to three percent of school-aged children and is most common in girls ages 10-15. There are several different types of scoliosis, but the most common is adolescent idiopathic scoliosis (AIS).

Causes and Risk Factors
Idiopathic means that the cause is unknown. Research has proven that scoliosis has a genetic component and tends to run in families. Children with a family history of scoliosis are more at risk, especially those aged 10-15. Girls tend to be diagnosed with scoliosis more than boys, and the condition is not limited to a specific ethnicity or race. Groundbreaking research at Scottish Rite for Children is working to determine the cause of scoliosis, better understand factors that lead to curve progression, explore ways to prevent curve progression and improve treatments.

In congenital scoliosis, the cause is known. For example, a child may be born with a misshapen vertebra, one of the building blocks of the spine. Interestingly, recent research has also shown that congenital scoliosis may be partially genetic as well. Finally, a scoliosis curve may also develop from an underlying neurological disorder, known as neuromuscular scoliosis.

Dispelling the Myths
When it comes to scoliosis, it is important to know facts versus fiction. Below we correct some of the myths about scoliosis:

  •  Slouching, bad posture, sleeping position, or carrying heavy books, backpacks or purses will NOT cause scoliosis.
  • A lack of calcium will NOT cause scoliosis.
  • Scoliosis is NOT the result of doing anything “wrong,” and there’s NO way to prevent it.
  • Scoliosis does NOT cause severe or disabling pain in children.
  • Scoliosis CANNOT be prevented by exercise or by sitting up straight.
  • Scoliosis CAN continue into adulthood but is very treatable with bracing, physical therapy and/or surgery.
  • Surgery is NOT the only treatment available.
  • Chiropractic adjustments do NOT treat scoliosis.

Early Treatment is the Key
Early screening and intervention are key to successful scoliosis treatment. It is important that your child is screened by a health professional for scoliosis annually so that any abnormalities can be identified quickly. Screening involves looking at the spine via physical examination for asymmetry of the shoulders, shoulder blades and hips. A parent, school nurse or friend may notice a small difference in the shape of your child’s back or you might notice that clothes begin to fit differently.  Depending on where the curve is located in the spine, when you look in a mirror, you may see that one shoulder is raised or that “one hip is higher than the other.” In most schools, girls are screened in school at age 10 and again at age 12, while boys are screened once at age 13 or 14. If your child appears to have scoliosis during a screening, you will be notified and sometimes referred to an orthopedic specialist. If the specialist confirms true scoliosis, then the sooner treatment is begun, the need for surgery may be able to be avoided.

Bracing to Prevent Surgery
In less severe cases of scoliosis, surgery can altogether be avoided with the use of an orthotic brace. Braces are highly effective in treating scoliosis, but only if they are worn properly and according to the doctor’s guidelines. At Scottish Rite, all scoliosis braces are made on-site in our Orthotics & Prosthetics lab. This allows us to make same-day adjustments for fit or comfort. Wearing a brace diligently can prevent the progression of the curve, reducing the need or risk for surgery.

Each scoliosis brace that we make includes two dime-sized temperature sensors that track wear time. One is for our record keeping and can be tracked with each visit. The other is a Bluetooth sensor that can be connected to the parent and patient’s cell phone app. Created by Scottish Rite experts, the Brace Rite app uses real-time data, allowing parents, patients and your doctor to monitor wear time to ensure your child stays on track.

Physical Therapy to Prevent Progression
While scoliosis cannot be prevented, certain physical therapy techniques can be used to treat the condition and may prevent further progression. Scottish Rite has physical therapists that are trained and certified in the Schroth Method, a scoliosis-specific exercise approach. The Schroth Method focuses on correction of the curve pattern through a combination of stretching, strengthening and breathing in reverse directions, all based on each patient’s unique spinal curve. Using the Schroth Method can stop the progression of the curve, improve mobility and promote proper posture.

My Child Needs Surgery – Now What?
Not all cases of scoliosis can be treated without surgery. In significant curves of 45 to 50 degrees or more, surgery may be the best treatment option. There are several surgical techniques used to treat scoliosis, but the most common is spinal fusion. In a spinal fusion, the curved vertebrae are fused together to create a single, solid bone. This stops the growth in the abnormal part of the spine and prevents the curve from worsening. Metal rods attached by screws, hooks and/or wires are used to hold the spine in place until the bone heals. In all spinal fusions, a bone graft is used to help promote the fusion and the bones grow together to create one solid bone. Once a spinal fusion has been performed, patients can usually return to their normal activities within three to four months. However, each case is unique and some timelines may differ. At Scottish Rite, our Sarah M. and Charles E. Seay/Martha and Pat Beard Center for Excellence in Spine employs six pediatric orthopedic surgeons who specialize in spinal surgery for scoliosis using the latest innovative techniques and treatment methods.

Learn more about the importance of scoliosis screening.