Thoracic Insufficiency Syndrome Second Opinions
Would you like a second surgical opinion from a CHOP expert?
Care and treatment decisions for a child with thoracic insufficiency syndrome caused by progressive scoliosis and severe rib fusion, or a host of complex, congenital conditions that affect the size of the chest wall, can be both complex and confusing. For this reason, many families seek a second opinion or consultation before beginning any treatment plan.
At Children’s Hospital of Philadelphia (CHOP), pediatric specialists from the Wyss/Campbell Center for Thoracic Insufficiency Syndrome (CTIS) are available to you or your physician to provide second opinions or consultations. We work with families and pediatric specialists from all over the country and around the world to provide second opinions and consultations so you can make informed decisions for your child’s individual treatment and care.
Our Center offers direct contact with Program Manager Susanne Manzoni, RN, BSN, to help guide your child’s care journey. She can help coordinate collection of medical records, ensure records are clinically reviewed, and assist with scheduling, imaging, insurance and travel to CHOP, if needed.
HOW TO GET A SECOND OPINION
Here are your options for requesting a second opinion from a pediatric thoracic insufficiency syndrome specialist at CHOP:
Why and when to get a second opinion from a pediatric thoracic insufficiency syndrome specialist
Families seek second opinions and consultations for many reasons, including:
- Feeling uncomfortable with or needing confirmation of a diagnosis: When your child receives a new diagnosis you likely hope to make a treatment plan as soon as possible. You may find that a second opinion or consultation helps clear up doubts you may have or provides you with the confirmation you need to proceed with treatment.
- Needing help with a decision to start, stop, or change a treatment plan: It is not uncommon for parents to seek second opinions or consultations before their child receives any treatment, so you can feel confident in the path you are on. Another common time to get a second opinion or consultation is when a change in treatment has been recommended, or you are seeking additional treatment for a returning or recurrent issue.
- Seeking the opinion of a pediatric specialist with experience treating your child's condition: While your child’s specialist may have experience treating other children with your child's condition, they may wish to obtain a second opinion from a pediatric surgeon/specialist who is highly experienced with thoracic insufficiency syndrome, especially because the disease is rare, or your child's individual care is complex. CHOP specialists are national leaders in treating thoracic insufficiency syndrome and the many congenital conditions that often cause or accompany the disorder. Our team includes clinical and research leaders who are constantly striving to refine and develop new treatment methods in addition to the vertical expandable prosthetic titanium rib (VEPTR), the only FDA-approved treatment for thoracic insufficiency syndrome.
How our CTIS referral nurse navigator can help with second opinions
When you contact Susanne or Mary, they will speak with you about:
- Your child’s diagnosis and the surgery proposed by others
- CHOP thoracic insufficiency syndrome experts who can help you
If together you determine that CHOP’s Wyss/Campbell Center for Thoracic Insufficiency Syndrome is the right place for your child’s care, Mary or Susanne will schedule an evaluation with one of our experts.
Susanne and Mary are here to ensure your experience at CHOP goes smoothly. Their role is to:
Make the transition to CHOP’s Center for Thoracic Insufficiency Syndrome easier
They will assist you in gathering records, studies and imaging as needed to determine if our doctors can meet your family’s needs.
Coordinate care between departments
Your child may need to see multiple specialists at CHOP, and Mary and Susanne will help coordinate those appointments. One or both will attend your child’s initial thoracic insufficiency syndrome appointment at CHOP and will be available to guide you through the process. They will ensure that your questions are answered and that you understand any treatment recommendations.
Support you throughout your visit
Susanne and Mary will serve as your primary contacts throughout your visit to the Center for Thoracic Insufficiency Syndrome. They can coordinate housing and transportation, provide additional support as needed, and answer any questions you may have.