Thoracic Insufficiency Syndrome (TIS)
Overall, our goal is to bring awareness to spondylocostal dysostosis, klippel — feil syndrome, and thoracic insufficiency syndrome. Furthermore, Tenleigh’s Troops also promotes advocacy and support!
Furthermore, the following content is NOT a substitute for professional medical advice, diagnosis, or treatment. Overall, you should ALWAYS seek your physician regarding any questions or concerns.
What is thoracic insufficiency syndrome?
According to Boston Children’s Hospital, “Thoracic insufficiency syndrome is a chest wall deformity that interferes with lung function and development. Children with thoracic insufficiency syndrome are born with the condition, which tends to get worse as they grow. In most cases, they are also born with congenital scoliosis.”
Thoracic Insufficiency Syndrome Umbrella:
Spondylocostal Dysostosis (SCDO):
a.k.a. Jarcho-Levin Syndrome.
- A rare congenital condition.
- Multiple segmentation defects of the vertebrae (M-SDV) along with rib abnormalities.
- Congenital scoliosis.
- Short-trunk compared to height with a short neck.
Klippel-Feil Syndrome (KFS):
- Congenital condition
- Abnormal fusions of two or more in the cervical vertebrae
- Low hairline at the back of the neck.
- Limited range of motion in the neck.
Thoracic Insufficiency Syndrome Treatment:
“I’m not the mom with all the answers, I’m the mom who never stops looking.“
The Vertical Expandable Prosthetic Titanium Rib (VEPTR):
The initial procedure consists of one or more opening wedge thoracotomies and insertion of one or more VEPTR devices, one of which may include a spinal distraction hook (hybrid VEPTR device). The thoracostomies of the hemithorax are expanded maximally at the initial procedure and the devices are placed to stabilize the correction. Repeated surgeries to lengthen the VEPTR are performed on an outpatient basis at appropriate intervals to further correct deformities of the thorax and spine.Campbell RM. , Smith MD, Mayes TC, Mangos JA, Willey-Cour and, DB, Surber, J. The treatment of thoracic insufficiency syndrome associated with scoliosis and fused ribs, Presented at the American Association of Orthopedic Surgery, March 2000, Orlando, FL.
The Titanium Rib Project:
Dr. Smith & Dr. Campbell’s worked together for 13 years to perfect the VEPTR and the surgical technique. The VEPTR rod finally gained FDA approval in September 2004, becoming the first major advancement in spine instrumentation treatment since Dr. Harrington of Houston, Texas, created the Harrington Rod in 1962.
List of Conditions VEPTR’s can Treat:
Missing or fused ribs
Missing or malformed vertebra
Wedge Thoracostomies & VEPTR Insertion:
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Donations to help the family with medical expenses can be made at http://www.gofundme.com/tenleighjoy
Tenleigh’s Troops Creator & Blogger
Awareness, Advocate, Educate, Embrace, Support Scoliosis, and Love Life.
Tenleigh’s Troops was created in 2013 as a convenient tool to update friends and family during Tenleigh’s surgeries. Furthermore, the “Troops” show their support by posting a selfie wearing their Tenleigh’s Troops Support Apparel or the color green for Scoliosis Awareness.
Additionally, Shrake has been a Nurse Technician since 2009 with experience in Long-Term Care Facilities and Hospitals. The previous place of employment was at HSHS St. John’s Children’s Hospital in Springfield, IL.
Contact Haylee Shrake at