Her only option at this point is surgery, the typical treatment for scoliosis as severe as hers is spinal fusion, which comes with more than its fair share of negative consequences, the biggest is that spinal fusion would burn all bridges for treatment in the future, in spinal fusion the cartilage between the vertebrae being fused is destroyed so that the vertebrae can fuse (grow together) and rods are screwed the sides of the vertebrae. Spinal fusion also does have increased risks in later years due to the additional weight from the fused sections on lower discs. Hayley would need two separate fusions, in total two-thirds of her spine would need to be fused. With fusion the patient loses flexibility in the spine where it is fused. Fusion would require Hayley be out of school for two to three months and full recovery would take twelve months before all restrictions are lifted.
The alternative is a much newer surgery technique know as Vertebral Body Tethering (VBT), this surgery is not currently FDA approved, doctors have been preforming VBT surgeries for approximately fifteen years now and in fact Shriners in Philadelphia is participating in clinical trial to have the surgery approved. VBT uses a flexible cord between the vertebrae so the spinal flexibility is maintained, it doesn’t burn any bridges so that in the future if better treatments become available she would still be eligible for them. VBT is far less invasive and the recovery is much quicker, she would likely only miss two to three weeks of school and would be released from all restrictions in six weeks!
We traveled to Shriners in September praying that Hayley would be eligible for the study there, unfortunately they have very restrictive requirements for the study and Hayley fell outside their range due to her skeletal maturity. We have found a doctor in South Florida who is willing to perform VBT surgery on Hayley and has been performing VBT surgeries for seven years. He said Hayley is in the eleventh hour and needs the surgery before the end of the year to avoid spinal fusion.
Unfortunately, insurance won’t cover the cost of VBT surgery as it is considered an experimental treatment and the cost of her surgery is well above what we can do one our own. Left untreated we can expect her scoliosis to progress at a rate of 1-degree each year. We need your assistance to help get our daughter the treatment she needs and out of the constant pain so she can go back to a normal teenager. We have her surgery scheduled for December, but, they won’t operate if we cannot pay the full fee for the surgeons ahead of time.
The power of prayer has gotten us this far and found us a doctor willing to take on her case for a reasonable amount compared to others in their field. Any amount is greatly appreciated, and we'd love to pray for you and your family. If you can't donate, please share this, that's just as much of a help as a donation.
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