Pediatric Spine Foundation Success Stories

This page contains just a small sample of all the success stories. Click on each name to reveal their story.

Lexi’s Scoliosis Story

Lexi-story1Lexi turned 12 years old on May 17, 2015. Ten days later, on May 27, she had VBT surgery to correct her Scoliosis, performed by Dr. Amer Samdani at Philadelphia Shriners Hospital.

Lexi was diagnosed with Scoliosis right after she turned 10 in 2013. Her curves were at 28 and 19 degrees at that time. From that point she wore a back brace 20-22 hours a day, 7 days a week, 52 weeks a year. Despite diligently wearing her brace, she progressed to three curves at 41, 57 and 22 degrees.

In January 2015 her orthopedic spine specialist in our hometown recommended her for Magnetic Growth Rod Surgery, a revolutionary new technique compared to the standard growth rod surgery. However, with either growth rod surgery, it would have meant that during Lexi’s remaining growth period of about 1.5 years, her activity would be limited to walking and light jogging. No bending, twisting, reaching, swimming, much less competitive sports activities. And she would need to continue to wear a back brace during this period. And at the end of her growth period, would need another surgery to place a permanent rod and fuse about 10 of her vertebrae together. After that, she would have about a 6-month recovery period before returning to activity.

This was devastating news, as it meant our multi-sport, athletic and active child would be rendered virtually immobile and would still have to wear a brace until she was done growing, then would have permanent rod-fusion surgery and recovery, leaving her with flexibility limitations.

The day after the recommendation for magnetic growth rod surgery, we learned of another revolutionary surgery, Vertebral Body Tethering Surgery, which only has about a 6-week recovery period before returning to normal activities, does not require any further bracing or another surgery, avoiding the need for fusion and leaving the patient with greater flexibility. After talking with many friends, medical professionals, and other scoliosis patients, we were resolved that tethering surgery was the right option for our daughter. We were approved for surgery by Dr. Samdani for May 27 at Philadelphia Shriners Hospital.

Once we arrived in Philadelphia, Dr. Samdani and the staff at Shriners made us feel so comfortable and confident in the procedure we had chosen for Lexi. Also the staff at the Ronald McDonald House were just as welcoming, letting brother and dad stay there while mom stayed at the hospital. Lexi’s surgery went as planned with no complications. She spent 1 day in ICU and 4 days in a regular room. We got to know all of the nurses and many of the patients, some with scoliosis and some with much more complicated orthopedic issues.

At Lexi’s 8-week checkup July 23 with Dr. Samdani, her curves were about 35-35-15. Dr. Samdani cleared her for full activity and told her, “Go live your life and don’t think about Scoliosis.” The tether cord installed during surgery does not limit her flexibility has enough slack that it will allow her to grow, and as she does, the cord will be pulled tighter and her back pulled straighter. We expect a final result of her major curve going from 60 to 20 degrees.

After being cleared by Dr. Samdani, Lexi was immediately back to swimming, playing softball and field hockey, and plans to return to gymnastics and basketball this winter.

We were thrilled that we have found this surgery option to be able to give Lexi the best possible outcome for her future.

Lexi’s parents, 2015

Virgie’s Scoliosis Story

My daughter Virginia was diagnosed with Scoliosis during 8th grade (she was about 14 years old but still Virgie-story1growing.) I noticed an imbalance in her shoulder blades and back one day and, because I had Scoliosis when I was around that age, I went to have her checked out immediately. We were informed that she had 35 and 31 degree curves in her spine. Despite the severity of the curves, we didn’t want her to go through surgery right away so she slept in a night brace for a little less than a year. After we saw no improvement we were forced to make a decision on a corrective procedure.

I researched extensively online to determine what options were available and started the process of visiting experts for recommendations. Spinal fusion seemed to be the most common and the one procedure I wanted to avoid, if possible, due to my own experience with Harrington rods. Thanks to the help of my sister, who has been in the medical field her entire career, she recommended Dr. Betz. After going through our options, Dr. Betz told us about a fairly new surgery that used a flexible tether instead of a solid rod. This option sounded appealing so we decided to go through with the procedure which combined tethering and staples. It was a hard decision considering the small number of people that had had the surgery but we trusted that Betz and his team would do a wonderful job, and they did.

On October 16, 2011 Virgie had her surgery. It resulted in her curves decreasing to 9 and 6 degrees with barely any time in a recovery brace. It’s been almost four years since the surgery and Virginia is better than ever. She’s now a junior in high school, getting ready for her senior year, and she participates in any and every physical activity she desires with no issues.

With the dedication and comfort of Dr. Betz and his team, Virgie’s surgery had an incredible outcome and a smooth recovery. Anything we needed, someone was there and any question we wanted to ask, someone could answer. The patience and support from everyone around Virginia really helped her to recovery efficiently. We can’t thank Dr. Betz and his team enough for everything they did, from creating a custom brace for Virgie to wear under her clothes, to removing her bandages the way she wanted. We have been blessed with the outcome.

Mark, Virgie’s dad, 2015

Hadly’s Scoliosis Story

Hadly tells her own story…Hadly-story3

Strength. Confidence. Self-determination. Courage. Perseverance. Struggle. These are words that describe my life. These have shaped the young woman I have become, and made me stronger than I ever thought I could be.

When I was three, I was diagnosed with scoliosis. I wore a hard back brace for eight and a half years. It was very hot and uncomfortable. Eventually I grew accustomed to it, wearing it 24/7.  I could not wear the clothes I wanted to wear, or participate in the activities I wanted to do because of the brace, and I was ridiculed for it. When I took off the brace, and looked at myself in the mirror, I was very unhappy, and the scoliosis was only getting worse. I knew the brace would not change how my back looked.   In April of 2008 , when I was in sixth grade, Dr Betz performed a surgery called vertebral body stapling (VBS) to straighten my back. There were only about 150 performed in the world, so we did not know what the outcome would be.  I now have four permanent, four prong staples in my spine to act as an internal brace.

Hadly-story1My two passions – music and sailing – were what enabled me to recover quickly. Music has always been an integral part of my life and I knew that was what I wanted to do for the rest of my life.  Two weeks after surgery I performed in my school’s lip-sync competition. I returned to my dance studio, sitting on a chair watching the dances, determined to be in the recital. Music is a coping mechanism for me – whether it was through dancing, writing songs, or belting out a song on stage.

I returned to sailing in July. No matter how many times I flipped, I climbed back into the boat and kept sailing. I do not give up, which is why I was able to get through my surgery and return to living my life the way I want to live. Sailing taught me perseverance.

Seven years have passed since my surgery. I feel so free and am living my life as a normal teenager. I am able to Hadly-story2accomplish anything; not just because of the surgery, but because of the motivation and confidence it has given me.  I continue to sail every summer in a single handed boat, winning awards throughout the South Jersey racing circuit. I am a college freshman in New York City, at the #1 College Theatre Program in the country as a Musical Theatre Performance major.  Thanks to Dr Betz and VBS I am living freely and ready to take on the world, scoliosis and all!

Hadly , 18 yrs old, 2015

Liz’s Scoliosis Story

liz-story1Liz tells her story…
My journey begins when I was five years old. I was diagnosed with scoliosis. I had no idea what that meant. Eventually, I went to Shriner’s Children’s Hospital in Philadelphia, where I met Janet Cerrone. I soon figured out I had to wear a brace every day.
Then when I was about eight, I stopped wearing the brace on my own accord. I found the brace very uncomfortable and I felt weird in it.

When I was around ten or eleven, surgery began to come into my perspective. We began discussing a procedure called Stapling. This is where titanium staples are put into your back to straighten it out. This seemed like my second option, since I refused to wear my brace.

I still hadn’t hit my growth spurt yet and my rotation was already over fifteen degrees. My curve was  about 20 degrees. Because I was still going to grow alot, Janet predicted that my curve would become much worse. She was worried that staples alone without help from a brace at night would not be enough. She took my case to a meeting about Tethering and presented her theory. Tethering is a procedure where titanium screws are put into your back and are connected by a nylon-like rope. As you grow, the rope straightens out your back. Dr. Betz, one of the creators of this procedure, agreed with her.  My curve was getting worse so I was put on the list for this surgery.

In January of 2012, I had a pre-op appointment in Philadelphia. My curve went from 30 degrees to nearly 50 degrees in just 2 months! Her prediction liz-story2came true. That was when my condition became scary to me. Luckily, I was already scheduled for the surgery.

On February 1, 2012, I went into surgery for the first time in my life. The procedure took about seven hours and I woke up groggily. I spent three days in the hospital and came home with a protective brace that I had to wear for two months. The brace was made to protect me and to make sure my back grew straight.  Eventually, they also told me I had no restrictions on what I could do.

Today, three years after my surgery, I am in Theatre and Dance. I have been doing theatre for three years and I have never experienced anything wrong with me. I can dance, act, sing, and do splits all day long. I have no restrictions. My curve is just about 10 degrees and I am finally living a normal life without scoliosis, thanks to Tethering.

Liz, 16 yrs old, 2015

David’s Scoliosis Journey

David’s Scoliosis Journey

David was not yet 2 years old when in February of 2000 he was diagnosed with scoliosis.   We were referred to a pediatric orthopedic specialist affiliated with a highly regarded facility in New York City.  We were given only one option, to put David in a hard plastic brace for 22 hours a day and hope that it would hold his curve.  The plan was to do this for as long as possible to delay inevitable surgery – growing rods and eventually spinal fusion surgery.

The months and years began to pass.  The brace was uncomfortable, particularly during the summer months.  I was concerned he might get teased,that he would not be able to participate in sports as his older siblings had done, and that full-time bracing for so many years would have negative effects on his health.  Each time we went for a checkup, I was told there were no other options.

In the Fall of 2003,strictly by chance, I read about a new procedure pioneered by Dr. Randal Betz called vertebral body stapling (VBS or stapling). A one-time surgery that not only could hold the curve, but possibly bring some correction, as well as allow the spine to continue to grow.  It’s sometimes referred to as an internal brace so perhaps David could even be freed from his hard plastic brace.  David’s doctor immediately dismissed the idea without so much as a serious discussion, stating that it was “experimental” and simply had not been around for long.   Yet, the little Mommy voice told me to go with my instincts. There I was, having no medical background, considering going against our specialists’ advice.

david2We meet with Dr. Betz in December of 2003.  Unlike our previous doctor, Dr. Betz was warm, kind, and understanding, particularly with regard to the challenges of bracing a child for so many years.  He had the desire and interest to help David.  So, after having known this man for less than an hour, we mustered up the courage to go against the advice of our doctor and took a leap of faith with Dr. Betz and scheduled VBS.  It was the single best decision we have ever made.

On March 10, 2004, David’s surgery was performed.  His curve at the time was 40 degrees.  Eleven years later, David is a junior in high school playing baseball and basketball.  His curve has been decreased by about 15 degrees, his shoulders are even, he is balanced, and he looks and feels great.  Most importantly, he can do anything other kids can do.  Thankfully, he never had to experience feeling different or wearing a brace to school.

None of this would have been possible without Dr. Betz and the VBS procedure.  His passion to continue to come up with innovative ways to treat scoliosis makes me proud to serve on the Board of the Pediatric Spine Foundation. With any luck, I can – in some small way – help him to achieve the goals he has set for the Foundation so that more children can be as fortunate as our son David.

Maria Follenius – January 2015

Camille’s Scoliosis Story

Camille’s Scoliosis Story

CamilleMy daughter Camille was diagnosed with Scoliosis just after turning 8 years old.  It was a good pick up by her pediatrician at her annual physical, which led to an x-ray that turned our world upside down.The first Orthopedic Specialist we saw, that treated adults and children, recommended that we do nothing and repeat x-rays in 6 months.

We went for a second opinion with the wonderful Dr. Newton at Rady Children’s Hospital in San Diego. His recommendations were much more proactive and appropriate for a child eight years old with two curves in the mid 20s.  An MRI was negative and she was fitted for a TLSO brace.  She had good in brace correction and over the course of a few months we developed a routine with the brace and she was compliant with it.  Thinking back now, she was so little and wanted so badly to get better and be cured.

From the start, Dr. Newton had always been honest with us. Due to Camille’s early onset of Scoliosis and despite bracing, she had a high chance of curve progression and the ultimate need for surgery.

Dr. Newton encouraged our cross country consult with Dr. Betz at Shriners Hospital in Philadelphia to explore the early intervention option of VBS.  At the appointment we learned that Camille was an excellent candidate for VBS based upon her age, curve sizes, and her flexibility.  She was placed on the waiting list.  On April 25, 2012, Camille,age 9, had VBS performed by Dr. Samdani at Shriners Hospital in Philadelphia.  Dr. Betz was present, as well as bringing two visiting surgeons into the OR to observe the case.  WeCamille2 were very impressed with the care we received at the office visits and during the hospitalization at Shriners.The transition of care back to our local specialist, Dr. Newton, was smooth and he is pleased to continue to follow Camille with x-rays and a visit every 6 months.

Dr. Samdani will see her again if needed.  Camille is almost 3 years post-op, 12 years old, in her growth spurt and her x-rays are as beautiful as she is.  We agree that having VBS when she did was the best decision ever and cannot imagine her still having to wear a back brace.

We have been fortunate enough to have some of the top specialists in Pediatric Scoliosis treat our daughter. I highly recommend all of these wonderful physicians.  I am grateful to them for their pursuit of new and groundbreaking surgical procedures for the treatment of Pediatric and Adolescent Scoliosis and am proud to support them in their continued efforts.

Tess Maloney – February 2015

Ainsley’s Scoliosis Story

Ainsley’s Scoliosis Story

Ainsley was diagnosed with scoliosis at age 8 with a 17 degree curve. We tried the wait-and-brace routine and the Scoliosis Bootcamp—both of which were unsuccessful in halting progression. By the time she was 12, she was at 59 thoracic and 45 lumbar. Her original orthopedic surgeon was recommending conventional fusion, T3-L4, but we were extremely hesitant because of the long-term implications of immobility. In July 2014, the Bootcamp director referred us to Dr. Randal Betz, hopeful that Ainsley might be a candidate for VBT.

At first, Dr. Betz and his team agreed that conventional fusion was the best option. We were disappointed, but also immediately knew we’d found the doctors who would perform the procedure, even though it meant going so far from home. Dr. Betz, Dr. Antonacci, Dr. Cuddihy and their PAs Joel and Janet were fantastic and treated us with the same care and compassion as if Ainsley were one of their own children.

Not long after we committed to a surgery date, Dr. Betz asked us to return for a second consult. He had reconsidered Ainsley’s case, and in the meantime had performed several successful hybrid fusion/VBT procedures. He thought Ainsley might be a good candidate. After a new set of x-rays and exam, he agreed thoracic fusion/lumbar VBT would correct her curve and help her maintain mobility/flexibility in the critical lumbar region. We were thrilled!

Ainsley underwent surgery on November 17, 2014 at Mt. Sinai Hospital in NYC. It was an outstanding success. Not only did the doctors achieve excellent correction (from 65T to ~20T and 45L to ~15L), but she has recovered extremely well. We could not be more pleased with the surgical team at the Institute for Spine & Scoliosis and are so grateful for their “outside the box” approach in treating Ainsley’s scoliosis, ensuring the best possible long-term outcome and quality of life for her. We’ve traveled thousands of miles, 12-hour round trips for office visits, and it was very scary to go 8 hours from home for such a major surgery so far from our friends and family. But it was absolutely worth it. Thanks to these skilled and progressive surgeons, we know the future is much better for our daughter than it would have been with conventional fusion.

Kara Gray – February 2015

Eliana’s Scoliosis Story

Eliana’s Scoliosis Story

Ainsley1I took Eliana to the pediatrician in May of 2014 for her annual check up. Her doctor thought there may be a slight curve and recommended we see an orthopedic surgeon. Unfortunately, I did not act immediately because as a child I was told that I had scoliosis and it resolved itself. I just assumed Eliana would be like me.

Over the summer I noticed her bathing suit was fitting oddly so in September we took her to the orthopedic surgeon. We were in for the shock of our lives. He measured her S curve at 53T 49L. Bracing was not an option. He explained that our one and only option was fusion. He also told us about the possible complications of this surgery. As we walked out of his office I promised Eliana that we would not do fusion surgery. We would find another option!

We came home and I searched the internet for a solution. First, we found the Schroth method and we immediately enrolled her in physical therapy. Shortly after that we found The Institute for Spine and Scoliosis. We read about VBT and it sounded like an amazing possibility. It made so much sense to me! I called Janet Cerrone and she thought Eliana sounded like a good candidate but Dr.Betz wanted to see her in person to see how flexible her spine was and how much growth she had left. We flew out to NJ on October 13th to meet the team. Dr. Betz and Janet patiently answered all of the questions I had for 90 minutes! I was convinced we had found the perfect solution for our daughter. We were told she was an excellent candidate and Eliana, my husband and I felt very comfortable with the procedure.Ainsley2

Surgery was scheduled for November 24th at Mount Sinai in New York. We met with Dr. Antonacci, Dr. Betz, Dr. Cuddihy, and Joel that morning and I knew she was in excellent hands. What an amazing team of doctors they are. The surgery was shorter than we expected and the doctors were thrilled with the results! She went from 59T 56L pre op to 16T 6 L post op. Wow!! She will also continue to straighten as she grows. We were all over the moon!

Eliana is now 2 weeks post op and doing very well. She is gaining weight, re-gaining her strength, and mobility. I will be forever grateful that we found the Institute for Spine and Scoliosis and that Dr. Antonacci, Dr. Betz, and Dr. Cuddihy were able to perform VBT with such amazing results.

Jessica Maheo – December 2014