Curves of Life - Lizzie Camp
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CURVES of LIFE
Elizabeth was diagnosed with moderate scoliosis at the age of 10. Immediately she began wearing a brace for 22+ hours a day and practicing scoliosis specific exercises called Schroth Physical Therapy, 4-6 times a week to halt the progression of the curves. During the first year of this conservative treatment her curves decreased in degree. But, within the next two years her scoliosis became more aggressive and the compliant brace wearing and exercises did not hold the curves from progressing. Elizabeth is now a candidate for surgery.
FIRST CURVE: Path to surgery
After much research and meeting with various doctors, Elizabeth was excited to learn she was in the “sweet spot” for having Anterior Scoliosis Correction, or Anterior Vertebral Tethering. This surgery is successful in lessening the curves and preventing them from getting worse. Fans of AGT might recognize this surgery as Simon paid for one of the Mersey Girls to have her scoliosis corrected by the doctors we have met. (Read about the surgery and story here: https://www.dailymail.co.uk/health/article-5209011/Simon-Cowell-pays-175-000-teenagers-spine-surgery.html
The recovery time is much quicker compared to the traditional fusion, and after the surgery she will have complete mobility throughout her spine as she enters adulthood. The screws are placed in her spine from the side and then a polyurethane tether is attached to create tension to pull the curves straight. It is beneficial to do this surgery when Elizabeth has some growth left (which is why she is in the sweet spot), and it will help correct the curves. But, the window on her growth is closing quickly, and her bones will be skeletally mature within the next 6-9 months.
SECOND CURVE: Insurance Denial
After the insurance company received the appropriate codes from the doctor’s office, they contacted us verbally on January 9, 2019 and informed us that the surgery and hospitalization would be covered “out of network.” This was confirmed by the same person on Jan. 14, 2019. On January 17, 2019, another person from the insurance company called and confirmed it would be covered “out of network.” An hour later they called again and informed us that the entire surgery and hospitalization would be denied, claiming that the cord is “experimental.”
The polyurethane tether is approved for spinal surgery in adults. It is being used at Mayo Clinic in Rochester, MN; at Shriner’s Children’s Hospital in PA and over 25 doctors across the country as Pre-Market FDA approval for this specific surgery.
THIRD CURVE: Missed Opportunity and Risky Curves Moving
So, Elizabeth now must wait, continue to progress in her curves, and continue to grow and become skeletally mature. Every day that passes she is at risk for curve progression and missing out on the opportunity for this beneficial surgery. She would continue to progress into adulthood, facing pain, limited lung function, endless therapies and even to the point of her organs being crushed. Currently, she is wearing a brace for 22+ hours a day and doing her PT to keep strong and have less pain.
MORE CURVES AHEAD: Use of money & what is next
Money would be spent to self-pay for the Doctors/Surgeons fees, the hospitalization, anesthesiologists, neuromuscular testing and travel expenses and accommodations for the family. Surgery would take place in New Brunswick, NJ since there are no doctors in her home state that perform the procedure. We will appeal the insurance company and fight for what we can. But, the money raised would mean so much as Elizabeth would at least have the option of surgery before it is too late.
Gratitude in Curves
We know all of us have many curves in life to journey through. We thank you beyond words for the support you can give to Elizabeth during her curvy journey.
Expenses:
$90,000 for inpatient care (5-6 days in ICU)
$7,000 for anesthesia
$5,000 for neuromonitoring
$65,000 for surgeons
$6,000-$8,000 for lodging and travel expenses
Total in requests: $175,000
Elizabeth was diagnosed with moderate scoliosis at the age of 10. Immediately she began wearing a brace for 22+ hours a day and practicing scoliosis specific exercises called Schroth Physical Therapy, 4-6 times a week to halt the progression of the curves. During the first year of this conservative treatment her curves decreased in degree. But, within the next two years her scoliosis became more aggressive and the compliant brace wearing and exercises did not hold the curves from progressing. Elizabeth is now a candidate for surgery.
FIRST CURVE: Path to surgery
After much research and meeting with various doctors, Elizabeth was excited to learn she was in the “sweet spot” for having Anterior Scoliosis Correction, or Anterior Vertebral Tethering. This surgery is successful in lessening the curves and preventing them from getting worse. Fans of AGT might recognize this surgery as Simon paid for one of the Mersey Girls to have her scoliosis corrected by the doctors we have met. (Read about the surgery and story here: https://www.dailymail.co.uk/health/article-5209011/Simon-Cowell-pays-175-000-teenagers-spine-surgery.html
The recovery time is much quicker compared to the traditional fusion, and after the surgery she will have complete mobility throughout her spine as she enters adulthood. The screws are placed in her spine from the side and then a polyurethane tether is attached to create tension to pull the curves straight. It is beneficial to do this surgery when Elizabeth has some growth left (which is why she is in the sweet spot), and it will help correct the curves. But, the window on her growth is closing quickly, and her bones will be skeletally mature within the next 6-9 months.
SECOND CURVE: Insurance Denial
After the insurance company received the appropriate codes from the doctor’s office, they contacted us verbally on January 9, 2019 and informed us that the surgery and hospitalization would be covered “out of network.” This was confirmed by the same person on Jan. 14, 2019. On January 17, 2019, another person from the insurance company called and confirmed it would be covered “out of network.” An hour later they called again and informed us that the entire surgery and hospitalization would be denied, claiming that the cord is “experimental.”
The polyurethane tether is approved for spinal surgery in adults. It is being used at Mayo Clinic in Rochester, MN; at Shriner’s Children’s Hospital in PA and over 25 doctors across the country as Pre-Market FDA approval for this specific surgery.
THIRD CURVE: Missed Opportunity and Risky Curves Moving
So, Elizabeth now must wait, continue to progress in her curves, and continue to grow and become skeletally mature. Every day that passes she is at risk for curve progression and missing out on the opportunity for this beneficial surgery. She would continue to progress into adulthood, facing pain, limited lung function, endless therapies and even to the point of her organs being crushed. Currently, she is wearing a brace for 22+ hours a day and doing her PT to keep strong and have less pain.
MORE CURVES AHEAD: Use of money & what is next
Money would be spent to self-pay for the Doctors/Surgeons fees, the hospitalization, anesthesiologists, neuromuscular testing and travel expenses and accommodations for the family. Surgery would take place in New Brunswick, NJ since there are no doctors in her home state that perform the procedure. We will appeal the insurance company and fight for what we can. But, the money raised would mean so much as Elizabeth would at least have the option of surgery before it is too late.
Gratitude in Curves
We know all of us have many curves in life to journey through. We thank you beyond words for the support you can give to Elizabeth during her curvy journey.
Expenses:
$90,000 for inpatient care (5-6 days in ICU)
$7,000 for anesthesia
$5,000 for neuromonitoring
$65,000 for surgeons
$6,000-$8,000 for lodging and travel expenses
Total in requests: $175,000
Organizer and beneficiary
Move the World Operations
Organizer
Denver, CO
Debra Hanson Camp
Beneficiary
