Continuing our "Unusual Spine Cases" series, we take a look at the toll a severe case of scoliosis took on a young girl and her mother.
While some degree of scoliosis occurs in approximately 10% of children, less than 1% of cases require medical intervention beyond monitoring.1
Read more: Scoliosis: What You Need to Know
This case presents a young girl, Jenny,* who fell into that small percentage. Her case is unusual because she required 2 extensive surgeries for scoliosis curves in both her upper and lower spine.
A diagnosis of severe scoliosis
In October 2009, when Jenny was 12, she began complaining of shoulder pain. Her mother took her to the doctor, who diagnosed her with scoliosis. Jenny's mother commented, "We did not have any knowledge of what scoliosis was or what to look for. I never recognized a problem at home."
The scoliosis diagnosis was confirmed that same day via X-ray. The doctor warned them that the scoliosis was severe, and that Jenny faced a tough fight.
Jenny's mother notes, "It was pretty tough when your little one has tears running down her face, asking if she is going to be okay, and you don't know. All I could tell her was that whatever it was we would get through it together."
Since 2009, Jenny has endured multiple surgeries and hours of physical therapy.
Jenny was referred to an orthopedist in Grand Rapids, Michigan who suggested bracing. At that point, Jenny's thoracic curve was 43 degrees.
Read more: Types of Scoliosis Braces
"I knew from internet searches I had done that bracing was not a really sound approach as she was so close to the surgery curves," her mother said. "We decided to go for a second opinion even though I had no idea where at that time."
A second opinion
In November of 2009, the family decided to take Jenny to Shriners Hospitals for Children in Chicago, Illinois.
Jenny was seen in January of 2010 by Dr. Peter Sturm and his team. By then her curve had increased another 10 degrees, and the decision was made to have fusion surgery. Her surgery was February 8, 2010; five days after her 13th birthday. At the time of her surgery, her thoracic curve was 63 degrees and her lumbar curve was 45 degrees. She was fused T1-9 during the surgery, which temporarily helped her lumbar curve.
After one year of chronic hip bursitis, Jenny's lumbar curve returned, and she had a second fusion surgery just after her 16th birthday on February 5, 2013. Jenny will return to Shriners Hospitals for Children at the end of February 2014 for her one-year follow up.
Since her surgery, Jenny has had a hard fight.
Her mother commented, "She was having a lot of pain and is now in physical therapy, which has been exceptionally helpful. Her surgeon told us that he hopes this last surgery would resolve her pain, but that she may always have pain. They just don't know."
The hope is that Jenny's physical therapy will continue to improve her flexibility and core strength. Her physical therapist has advised, however, that she may need physical therapy for the rest of her life. She is also being home schooled, since she missed so much time during her eighth grade year. She completed ninth and tenth grades at home.
Read more in the Physical Therapy Health Center
"Scoliosis has robbed her of many teenage experiences and friends," her mother said.
A positive response
Since her diagnosis, Jenny and her mother have worked to create something positive out of the experience. They created Scoliosis Awareness Bracelets as a way to start a conversation about the disease.
"We don't profit from our bracelets," Jenny's mother noted. "They serve as recognition for those with scoliosis and their families. Public awareness is really lacking."
As a parent of a child with scoliosis, Jenny's mother has learned a lot over the past few years and works hard to help other parents when facing this diagnosis.
"Parents need to know that scoliosis can affect their child. No child is exempt," she said.
Jenny's mother advises parents to trust their instincts with the advice they are given and select an orthopedist that has a great deal of experience with scoliosis.
"Support and understanding are critical," she said. "You want a doctor who deals with scoliosis every day."
Since 2009, mother and daughter have had a long, tough road that continues today. But they are doing their best to remain positive and raise awareness through their bracelets.
At Spine-health, we hope this "Unusual Spine Case" blog series is helpful to you. No matter what your diagnosis, you are not alone. Be sure to visit our forums for support, and to find people who have gone through similar experiences.
*Jenny's name has been changed to protect her identity.
In This Article:
- Unusual Spine Case Series: Occult Spinal Dysraphism
- Unusual Spine Case Series Part 2: Severe Scoliosis
- "Scoliosis." Encyclopedia of Children's Health. Accessed February 27, 2014. www.healthofchildren.com.