Tenleigh's Troops

Tenleighs Troops

Tenleighs Troops

Her Fight Is Our Fight!

Tenleighs troops Platform: Raise awareness to spondylocostal dysostosis, klippel — feil syndrome, and thoracic insufficiency syndrome.

tenleighs troops disclaimer: The content is NOT intended to be a substitute for professional medical advice, diagnosis, or treatment. ALWAYS seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition.

Tenleighs Troops
Lee, Tenleigh, Haylee, Joey, & Linda.

Our backs tell stories no books have the spine to carry.

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Spondylocostal Dysostosis, Klippel-Feil, & Thoracic Insufficiency Syndrome:

Spondylocostal Dysostosis:

a.k.a. Jarcho-Levin Syndrome.

OVERALL, No incidence figures have been reported in literature.

  • 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.
Tenleighs Troops
Spondylocostal dysostosis thoracic CT.
Tenleighs Troops

Klippel-Feil Syndrome:

Occurs in ~ 1 in 42,000 newborns worldwide.

  • 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.
Tenleighs Troops
Klippel – Feil Syndrome Cervical CT

Thoracic Insufficiency Syndrome:

Defined by Dr. Campbell in 1993

Occurs in < 4,000 children.

  • Complex condition with the inability to support normal breathing and lung growth.
  • Congenital scoliosis.
  • Kyphosis
  • Fusions or Absent ribs
  • Genetic causes
  • Lung Disorder
Tenleighs Troops
Thoracic Insufficiency Syndrome.
Tenleighs Troops
TIS Lumbar Spine CT.
Tenleighs Troops
Thoracic Insufficiency Syndrome Lumbar CT

Spondylocostal Dysostosis & Thoracic Insufficiency Syndrome Treatment.

The Vertical Expandable Prosthetic Titanium Rib (VEPTR):

Tenleighs Troops
The Vertical Expandable Prosthetic Titanium Rib aka VEPTR

Dr. Robert Campbell Jr.: Inventor of the VEPTR device as a treatment for Thoracic Insufficiency Syndrome

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 Orthopaedic 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

Conditions that the VEPTR has been used to treat:

  • Jarcho-Levin
    • Spondylocostal dysostosis
    • spondylothoracic dysostosis
  • Jeunes Syndrome
  • Congenital scoliosis
  • Missing or fused ribs
  • Missing or malformed vertebra
  • Kyphosis. 

Treatment of Thoracic Insufficiency Syndrome (TIS) & Congenital Spinal Deformities:

Wedge Thoracostomies & VEPTR Insertion:

Viewer Discretion Advised.

Dr. John B. Emans at Boston Children’s Hospital.http://www.childrenshospital.org

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<strong><em><span style="text-decoration: underline;"><span class="has-inline-color has-black-color">Haylee Shrake</span></span></em></strong>
Haylee Shrake

Haylee is the creator and blogger of Tenleigh’s Troops. Shrake also has been a Nurse Technician since 2009 with experience in Nursing Homes and Hospitals. The previous place of employment was at HSHS St. John’s Children’s Hospital in Springfield, IL.

The platform of Tenleigh’s Troops is to bring awareness on to spondylocostal dysostosis, klippel – feil syndrome, and thoracic insufficiency syndrome. In addition to spreading awareness, Tenleigh’s Troops also promotes parental advocacy and support.

Contact Haylee Shrake at haylee.shrake26@gmail.com

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