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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.

 

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

Share Your Story: Caroline’s Curve

Share Your Story: Caroline’s Curve

by | Jun 11, 2019 | Scoliosis & Spine

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

Blog written by Caroline’s mom, Christina, of Dallas. 

“What’s that little lump on her back?” This is how Caroline’s congenital scoliosis journey began, when she was almost nine months old.

We noticed a small lump on her back, around her spine, when she was leaning forward in the bathtub one evening. This discovery led to a lot of internet research and had me in tears, wondering what it could be. 
 
Her nine-month check-up was approaching, and we had her pediatrician take a look at her back. After his examination, he referred us to a pediatric orthopedic specialist

We were able to get in rather quickly and it was then that she was diagnosed with congenital scoliosis. Caroline had a 24-degree curve, plus a single hemivertebra at L2. When the doctor laid out the X-rays, we could immediately see that her spine was curved. We left that appointment in tears, shocked and terrified by all the things we had just been told. We were completely overcome with worry for our sweet girl and what her future would look like. He then referred us to the experts at Texas Scottish Rite Hospital for Children. Living in Dallas, we were familiar with the hospital.   

We immediately scheduled our appointment. Before our first visit, we did a good amount of research, just like any concerned parent would. We worried, we cried, we prayed, and we hoped for the best. When it was time for our appointment, we were prepared with all of our questions. When we arrived at the hospital, we were greeted with the smell of fresh popcorn and the sound of laughter from other children.

Every single person we saw had a smile on their face and was so friendly to Caroline and our family, putting us at ease.     

 
They took more X-rays of her back and chest, weighed and measured her, and then we waited to see Dr. McIntosh. As soon as she walked in, she told us that Caroline’s case was “not that bad.” She must have seen the extreme concern on our faces because her saying that immediately made our worries go away.  

She confirmed that it was congenital scoliosis with a single hemivertebra at L2. The hospital has a X-ray machine where the child stands upright rather than laying down. This method gives a more accurate reading. Here, her curve was only 19 degrees.
 
We also learned that since her hemivertebra was lower in her spine, it was not connected to nerves and there was no need to worry about possible nerve issues. She advised us to get Caroline’s heart and kidneys checked out since a large percentage of congenital scoliosis cases can also have heart or kidney issues. Her heart and kidneys ended up being just fine! We were so thankful.  

Dr. McIntosh said that she simply wanted to monitor Caroline and see her every six months. At our next appointment, there had been very little progression in Caroline’s curve – this was great news! Dr. McIntosh said that they will usually perform surgery once the curve gets to 40 degrees and the slower the progression, the more time Caroline will have to grow before possibly having to have surgery.    
 
We continue going for check-ups to monitor Caroline’s spine. We’ve been told there is a tiny chance she may never need surgery, but if she does, we feel confident in the doctors at Scottish Rite Hospital and no longer worry about our sweet girl. 

We have had such a wonderful experience and want to help others have the same opportunity. Caroline and I make children’s bracelets and we donate 100% of the proceeds back to the hospital.
 

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

FOX 4: Benjamin Waggoner shares his Eagle Scout journey

FOX 4: Benjamin Waggoner shares his Eagle Scout journey

by | Nov 1, 2018 | Press Coverage, Scoliosis & Spine

Read the original story on Fox 4’s website here.
 

This week was a big one for FOX 4 traffic reporter Chip Waggoner and his family. His son became an Eagle Scout. But it wasn’t easy for him to earn the prestigious title.

Benjamin Waggoner said he’s waited for years to be named an Eagle Scout.

“I’ve been through a lot in my life. I think few would expect to see something like this in existence… a kidin a wheelchair an Eagle Scout,” he said.

Benjamin’s mom and dad were right by his side as he earned the award, just like they’ve always been.

“He’s inspiring. I know, I’m dad. I’m biased. But he’s an exquisite light, unbelievably unique and when he comes into a room, he lights it up,” Chip said.

It’s been a long journey for the Waggoner family. Before Benjamin was born, Chip’s wife Wendy learned the baby boy she was carrying wasn’t developing as planned. Some people suggested she terminate the pregnancy.

“I remember thinking for 1/10th of one second, yes this is what we should do. And it’s like, wait a minute. Who’s in control here? God’s in control. God said he’s going to strengthen us and help us, uphold us with his righteous right hand. He’s going to take something, in control of everything. And if he’s in control of everything, he’s got a plan. And I have to trust that plan,” Chip said.

“It was our first child so we didn’t really know. It was our normal. But it was kinda scary because we haven’t had anyone in either one of our families that have had any kind of challenges like that,” Wendy said.

Even with all the worry, Benjamin’s birth was a beautiful moment.

“We did get to have a brief moment with him, hold him as best we could given the circumstances,” Chip said.

Benjamin was then immediately brought into surgery, the first of about 20 that he’s had in his lifetime.

He was born with a rare form of spina bifida. His spinal column is also tethered, causing him limited sensation in his lower body.

But he has exceeded his doctors’ expectations time and time again. In his world, if he faces a challenge, he figures out a way to conquer it.

That’s how he approached the requirements for his Eagle Scout award. For his Eagle project, he raised the funds and built a nine-hole Frisbee golf course at Camp John Mark, a camp that specializes in helping children with unique medical and physical challenges.

Chip has been a part of the FOX 4 family warning viewers about traffic trouble spots for 22 years. He has spent many nights on hospital cots, working split shifts at FOX 4 with little or no sleep. Still, he often has a smile on his face.

When meeting Benjamin, it’s easy to see his sweet, silly side, just like his dad. The two often turn to laughter to get through all the challenges of life.

“The scout motto being prepared is the biggest thing I’ve learned from scouting because it has applied to my life so much,” Benjamin said.

“He deserves every bit of this celebration. He is so worthy of being marked for this distinction and I can’t wait to see who he gets to inspire next,” Chip said.

The Waggoners are reminding people that life is a miracle and some moments are so so precious.

NBC DFW: Friendship Started With Act of Kindness on Keller Marching Band

NBC DFW: Friendship Started With Act of Kindness on Keller Marching Band

by | Oct 29, 2018 | Press Coverage, Scoliosis & Spine

Read the original article on the NBC DFW  website here.

Grab your tissue box – our patient, Drew, and his friend, Kailey, are making us cry happy tears! Hear how their friendship formed at Keller High School and how they plan to work together to march in the Macy’sThanksgiving Day Parade.
 

For the first time ever, the Keller High School Marching band will be in the Macy’s Thanksgiving Day Parade and they’ll be the only high school from Texas there in 2018.

Freshman member Drew Bell is “very excited, like very excited” to be taking part. He’s been playing the trumpet for four years, but how much has he practiced?

“Not as much as I should,” he said with a laugh.

Right by his side will be senior and section leader Kailey Summons, and she has practiced as much as she should — not to play, but to serve as Bell’s legs during their big performance, all because of a birth defect that left him in a wheelchair. And she’s one of Bell’s biggest fans.

“Oh he’s great, very positive attitude. He’s so funny,” Summons said. I mean he makes the best out of every situation. So, he’s a good, he’s a good kid.”

On a Thursday afternoon at Keller High School, the two are getting ready to perform before the football game in the band’s “Spirit Show.”

“There’s Drew!” she yells as he comes into the cafeteria where the band is gathering. “You’re just gonna be right here,” Summons says to Bell.

She looks after him, and he often needs it.

“Wait, where’s your gloves and gauntlets … do you have your jug?” Summons asks through the course of getting ready.

“I make sure he’s ready for everything, so then it’s just not me focused on me, it’s me and him,” Summons says.

For Bell, becoming a member of this marching band is a big deal. With its 400 members, it’s one of the best in the country.

“When did you know you wanted to be on the marching band at Keller?” he was asked.

“For as long as I can remember. I just like this band,” Bell said.

Before becoming a member of this prestigious group, Bell faced challenges greater than most, including seven surgeries. He has spina bifida, meaning his spine didn’t fully develop in the womb.

“So I was born like this. So, I’m stuck with it and going to be stuck with it forever, till I die,” Bell said.

Are there ever times when it frustrates him? 

“No … because I know that there’s people way worse than me,” Bell said.

And he doesn’t let it get in his way of anything — including the biggest obstacle when it came to being on a marching band. Bell can’t play his instrument and push his wheelchair at the same time. Someone needed to step up.

“And then my private teacher and my band directors were kind of like, ‘Well, if we can just get someone to be his feet and he can be the trumpet player,’ and I was like, ‘I’ll do it!’” Summons said with enthusiasm.

She didn’t hesitate, and the entire band welcomed him with enthusiasm.

“I wasn’t expecting it,” Bell said. “I would think that they would like, maybe not like me, but now I know that they do. So it’s really, it’s really good.”

“You know, you just worry that he’s going to be over on the side or something, you know what I mean?” said Bryan Bell, Drew’s father. “But since the first day I called Mr. McGahey [the Keller High School director of bands], I expressed those concerns and he said, ‘Bryan, no. He’s going to be a part of the band and we’re excited about it.’”

Bell is the first student on the Keller Marching Band to perform in a wheelchair. As a freshman, he’ll play alongside the band in New York City in the Macy’s Thanksgiving Day Parade, which is also a first for the school.

“It’s very exciting,” Summons said. “I never thought that I would be in any parade, let alone the Macy’s Day Parade.”

Summons still gets to perform with the varsity marching band in competitions and at halftime of football games, but for the “Spirit Show,” which is sometimes before a game, she skips playing her trumpet so Bell can be the one to shine.

When they perform together, Summons is the one who has to memorize all of their movements, and she takes Bell where he needs to be on the field.

She doesn’t play so he can. And she means a lot to Bell.

“Well, I wouldn’t be able to march without her,” he said. “She didn’t have to do it, she wanted to—and that means a lot to me, and she doesn’t get to play because of it.”

“I mean, it’s not really a sacrifice when you like doing it,” Summons said. “I just did it to make sure he knew that he always had a place in the band, and he always will.”

Each choreographed step is a symbol of the day-to-day partnership between Summons and Bell, because their individual actions give way to a bigger message.

When asked what Summons has learned from this experience, she said, “Just because someone is different from you, doesn’t mean you have to treat them differently.”

Summons said no matter what field they play on, there are usually obstacles that take them a little longer, but they always find their way together.

“You’re still strapped in,” Summons said to Bell as they waited at the bottom of the stadium’s stairs. “I know,” he answered.

She took his hand and together they climbed the stadium steps together to their seats with the rest of the band.

“She’s doing it because she felt it in her heart that she wanted to do it, and I think it’s blessing her too,” said Bryan Bell. “A lesson is when you give of yourself and sacrifice, it blesses you and it makes you happy, more than it’s helping — more than the other person is happy.”

It’s a friendship that began with a selfless act of service and because the Keller marching band welcomes every student.

Even though Summons is a senior this year, McGahey said he has no doubt that someone else will step up next year to help Bell as he continues his dream with the Keller High School Band.