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Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

by | Aug 14, 2024 | Scoliosis & Spine

18-year-old Aaliyah, of Kress, is transforming her personal journey with scoliosis into a source of inspiration for young girls with similar diagnoses. “Scottish Rite means so much to me by helping me find my passion in changing lives,” Aaliyah says. She shares her transformative care she received, hoping to make a scoliosis diagnosis less intimidating to patients.

Aaliyah was diagnosed with juvenile idiopathic scoliosis (JIS) after her routine physical at age 9. Her family faced a difficult decision: undergo spinal fusion surgery or risk losing Aaliyah’s ability to walk. Determined to find another way, Aaliyah chose to wear a spinal brace for 22 hours a day over a span of seven years. In 2021, Aaliyah’s back pain progressed, and she started treatment with pediatric orthopedic surgeon Dr. Jaysson T. Brooks. “After that visit, Dr. Brooks changed my life,” Aaliyah says. Instead of recommending surgery, Brooks suggested physical therapy as the best approach for her.

The treatment Aaliyah received at Scottish Rite fueled her passion for scoliosis awareness. Before she met Brooks, she was a member of the nonprofit organization Family, Career and Community Leaders of America (FFCLA). FCCLA offers programs, contests, scholarships and opportunities for member to develop skills needed for college and careers. Aaliyah’s experience inspired her project titled “The Journey.” This project explores her personal journey with scoliosis and the impact it had on her and her family’s lives. “The Journey” eventually placed in 5th place at FFCLA’s National Leadership Conference. Top of Form

Now, she is a prominent spokesperson for scoliosis in her community. In 2022, Aaliyah launched a scoliosis research fundraiser titled “The Outreach” for Setting Scoliosis Straight Foundation, a nonprofit devoted to empowering families impacted by scoliosis through education, connection and research. Her efforts caught the attention of mayor Johnny Taylor, who honored her dedication by declaring December 20th as both National Scoliosis Awareness Day and Aaliyah Wallace Day in her hometown.

There is no limit to the success Aaliyah will achieve! Her latest project, “My Testimony,” is a book series featuring characters LeeLee, inspired by Aaliyah, and Lillian as they embark on their journey of overcoming scoliosis. To launch the series, she organized a block party in Kress, with all proceeds going to funding the publication and illustration of the books. “I went from a scared 9-year-old to making a difference and changing lives with my story,” Aaliyah says. “I can’t thank Scottish Rite enough for changing my life!” Now, Aaliyah is attending her first year at Texas Tech University as a Pre-Medicine major. She was a recipient of our Legacy Scholarship, and we cannot be prouder of her!

Share Your Story: Lifelong Commitment to Care

Share Your Story: Lifelong Commitment to Care

by | Aug 5, 2024 | Scoliosis & Spine

13-year-old Lyla and her mom Ashley have more in common than they originally thought. Ashley was diagnosed with scoliosis in 2000 after her mom noticed a spinal curve while she tried on clothes. A chiropractor referred her to Scottish Rite for Children to begin treatment. It was the attentive care and support from chief of staff Daniel J. Sucato, M.D., M.S. and her child life specialist that influenced Ashley’s pursuit for a degree in Child Development and Family Studies from the University of North Texas.

In 2020, Lyla embarked on her own scoliosis journey with Scottish Rite at age 9. With a mother’s eyes, Ashley first noticed Lyla’s shoulder blades were uneven. They visited their primary care physician, who referred them to Scottish Rite. Lyla’s scoliosis was juvenile idiopathic scoliosis, known as the most common type of scoliosis.
The uncertainty of Lyla’s diagnosis disappeared when Ashley and her husband Chad discovered that Sucato would be treating their daughter. “My heart sank because I knew what it meant to have scoliosis,” Ashley says. “However, Dr. Sucato has the kind of heart needed to serve and advance orthopedic care for children.” Lyla’s scoliosis was treated mostly with a back brace for two years. She underwent spinal fusion surgery in 2023 and is now free from back pain!

Research proves that scoliosis has a genetic component and tends to run in families. Children with a family history of scoliosis, like Lyla, are more at risk. This is predominately seen in girls that range from ages 10 to 15.

Ashley and Lyla’s bond is stronger than ever. Lyla is like her mom in many ways, outside of sharing a diagnosis of scoliosis. They are both passionate about helping others, and Lyla is set on going to college to become a child life specialist at Scottish Rite. “Scottish Rite helps children improve their quality of life,” Ashley says. “Most importantly, Scottish Rite creates life-long memories and shows us how we are supposed to love and help others.” Lyla is incredibly active now and enjoys many hobbies like acting, reading, dancing, singing, being with her friends and serving at church! Lyla and Ashley’s diagnosis and care mirror each other, reflecting the need for the accessible expert care Scottish Rite provides.

Standing Tall After Spinal Fusion Surgery

Standing Tall After Spinal Fusion Surgery

by | Jun 27, 2024 | Scoliosis & Spine

Previously published in Rite Up, 2024 – Issue 2.

In January of 2023, Delilah, a 12-year-old from San Antonio, was helping her mother, Angie, clean the house. As Delilah bent over to pick up something off the floor, Angie noticed that her backbone protruded from her back at an abnormal angle. “It caught me off guard,” Angie says. She called her husband into the room and asked Delilah to repeat the movement. He looked at Angie with wide eyes and said, “What was that?”

Delilah’s pediatrician suspected scoliosis and referred the family to an orthopedic physician.

“After taking an X-ray, he gave us the news that her spine was at an 84 degree angle,” Angie says. “Delilah and I had tears in our eyes.” Angie explained that because of the curves magnitude, the physician said that he would feel more comfortable recommending them to Scottish Rite for Children. “We had never heard of Scottish Rite, but it was the best advice and decision we ever made,” Angie says.

At Scottish Rite, pediatric orthopedic surgeon Megan E Johnson, M.D., diagnosed Delilah with adolescent idiopathic scoliosis, of which there is no known cause. Because her curve had surpassed the surgical magnitude of 50 degrees, Dr. Johnson recommended posterior spinal fusion, a surgery in which a rod is secured to the vertebrae to straighten the spine and hold the correction of the curve in place.

“Scoliosis progresses more rapidly when kids are undergoing their big growth spurt,” Dr. Johnson says.

“Delilah still had a lot of growth left, so she was at a greater risk of progression.”

Before surgery, Delilah asked thoughtful questions and expressed some worries. “I had a fear of like, what if I wake up during surgery?” she says. “And, what if it doesn’t turn out right, or what if they miss something?” Dr. Johnson marveled at Delilah’s maturity. “For being 11 at the time, Delilah asked great questions, advocated for herself and did her own research,” she says.

In October, the family traveled to Dallas for Delilah’s surgery and stayed at the Ronald McDonald House of Dallas, Scottish Rite’s community partner. “They took such good care of my family,” Angie says. “I’m very grateful for that.” After a successful surgery, Delilah’s curve was corrected from 95 to 20 degrees. She also got two inches taller. “Delilah exceeded our expectations,” Dr. Johnson says. “She has been a champ through it all.” Six months later, Angie cannot believe that Delilah had spinal surgery. “It boggles the mind because she’s back to being herself,” she says. “For us, Scottish Rite means hope, that everything is going to be OK.” Delilah agrees. “You can trust Scottish Rite,” she says, “and know that you are in great hands.”

Read the full issue.

Scoliosis Awareness Month: Wearing Your Scoliosis Brace

Scoliosis Awareness Month: Wearing Your Scoliosis Brace

by | Jun 21, 2024 | Scoliosis & Spine

At Scottish Rite for Children, our spine experts care for the common to the complex of scoliosis curves. The type of treatment required for the condition depends on the child, when they were diagnosed and the severity of the curve.

One treatment option for scoliosis is bracing. At Scottish Rite, our in-house Orthotics department creates custom braces – making sure it fits the child just right. Here are a few basics to know about the scoliosis brace:

  • The purpose of a brace is to help stop the curve from getting worse with a goal of preventing the patient from needing surgery.
  • Although it does not cure the condition, if used on a curve that ranges from 25 to 40 degrees and the child is still growing, it can be extremely effective.
  • Your doctor will determine the number of hours the brace should be worn throughout the day.
  • If the brace is uncomfortable, our team works with the patient to make adjustments as needed throughout treatment.

Different Types of Braces:

  • TLSO (thoracolumbosacral orthosis) – used for curves located in the mid to lower part of the back
  • Providence Brace– also known as the nighttime brace, used for curves that are less severe.

Being Active While Wearing Your Brace:

  • Our team encourages a child who must wear a brace to continue with their sport and/or activity.
  • Bracing for this condition is only temporary, and although adjustments might need to be made to make the brace more comfortable, etc., it is created to fit the child so they can continue being active.

Taking Care of Your Skin
The brace pushes firmly on your body and will cause redness of your skin. Over time the skin in the pressure areas may become darkened and tougher. These changes are temporary and may improve brace comfort. If you develop a sore, your brace needs adjustment.

Clothing Suggestions

  • We recommend you wear a form fitting tank top under the brace. It is more comfortable when there is something between you and the brace.
  • Loose-fitting clothing will hide the brace better than form-fitting clothing.
  • Bras without underwire may be more comfortable.
  • To make using the bathroom easier while wearing the brace, wear your underwear over the brace.

Taking Care of the Brace
To help prevent skin irritation, the inside of the brace must be cleaned at least once a week, or more often as needed. Use a cloth to wipe the brace clean using soap and water or rubbing alcohol.

Learn more about scoliosis bracing.

Scoliosis Awareness Month: What is Scoliosis?

Scoliosis Awareness Month: What is Scoliosis?

by | Jun 11, 2024 | Scoliosis & Spine

What is it?
Scoliosis is not a disease. It is an abnormal curvature of the spine. In addition to the spine curving sideways, it also twists, making the ribs (which are attached to the spine) look uneven. This may cause a prominence or a “bump” on the back. Other signs include a shoulder or hip that looks higher than the other or the chest may appear uneven. Scoliosis is usually a painless condition. Children with scoliosis are no more likely than kids without scoliosis to have back pain.

The diagnosis of scoliosis is confirmed by taking an X‐ray of the spine. If a curve measures more than 10 degrees, it is called scoliosis.

Who has it?
Scoliosis usually occurs in early adolescence and becomes more noticeable during a growth spurt. Approximately 0.5 percent of young people develop scoliosis that requires treatment. Girls have scoliosis eight times more often than boys. Sometimes scoliosis can be found in several family members, for several generations.

Why does it happen?
There are several different types of scoliosis that affect children.

Idiopathic Scoliosis
The most common type of scoliosis is idiopathic, which means the exact cause is not known. Idiopathic scoliosis can occur in infants, toddlers and young children, but the majority of cases occur from age 10 to the time a child is fully grown. Scoliosis tends to run in families. It is not a disease that is caught from someone else like a cold. There is nothing you could have done to prevent it. It is not caused by carrying heavy books, backpacks or purses, slouching, sleeping wrong or from a lack of calcium.

Congenital scoliosis
Congenital means that you are born with the condition. Congenital scoliosis starts at the spine forms very early in pregnancy. Part of one or more of the vertebra does not form completely, or the vertebra does not separate properly. Other abnormalities may also be present such as ribs may be missing or there can be ribs that are fused together. This type of scoliosis can be associated with other health issues including heart and kidney problems.

Neuromuscular scoliosis
Any medical condition that affects the muscles and the nerves can lead to scoliosis and this is known as neuromuscular scoliosis. This is most commonly due to muscle imbalance and/or weakness. Examples of neuromuscular conditions that can lead to scoliosis include cerebral palsy, spina bifida and muscular dystrophy.

How is it found?
Finding scoliosis is easy when the back is examined closely but it can be missed if someone isn’t looking for it. Parents or friends might notice the curve, but most curves are found through a school screening program or by a pediatrician. A trained examiner can detect even a slight curve when a person bends over to touch her or his toes. If a curve is suspected, a referral is often made to an orthopedic doctor. Print this PDF.

What may be noticed on someone who has scoliosis:

  1. One shoulder may be higher than the other.
  2. One scapula (shoulder blade) may be higher or more prominent than the other.
  3. When the arms hang loosely at the side of the body, there may be more space between the arm and the body on one side.
  4. One hip may appear to be higher than the other.
  5. The head may not be centered exactly over the pelvis.
  6. The waist may be flattened on one side; skin creases may be present on one side of the waist.

What are the types of curves?
Curves occur in the spine between the neck and the pelvis. They are named depending on their location. The most common type is in the upper back (thoracic) and tends to curve to the right. Other curves are in the lower (lumbar) spine. Many children have both types of curves.

How are curves treated?
Treatment depends on how big the curve is when it’s detected and how much growth is left. Curves can worsen during the major growth spurts. Curves less than 20 degrees may not need any treatment except to be checked by the doctor from time to time until the child has stopped growing.

If a child is still growing and the curve is greater than 20 degrees, the doctor might recommend wearing a brace. Bracing will not correct a curve. The goal of bracing is to help prevent the curve from getting worse during growth. Braces must be worn as prescribed by the doctor during the growing years in order to be effective. After growth is completed or if the curve does not respond to bracing, the brace is no longer worn.

If a curve is advanced, the doctor may suggest an operation to correct the scoliosis. Allowing a large curve to progress could interfere with heart and lung function in later years. The most common type of operation is called posterior spinal instrumentation and fusion. Instrumentation refers to metal rods and screws that are attached to the spine to hold it in the corrected position. Fusion refers to the bone graft that is placed along the spine making the vertebrae one solid piece.

Learn more about the importance of scoliosis screening.

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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