Victoria needs major spinal surgery to correct her severe scoliosis. Time is of the essence so that Victoria can get this life-changing surgery that can help her pain but we cannot book a surgery date until we have the funds. We cannot move forward until we have a large down payment. I can't even imagine not being able to provide my daughter the medical care that she needs, but we need help to raise this kind of money in a limited time. Please help us if you can. Everything helps.
We are thankful that her spine is still flexible enough for her to be a candidate for this fusionless surgery. After you stop growing and reach skeletal maturity, your spine stiffens and loses flexibility. Her curves are still progressing. And her pain is getting worse. Recovery can take 4-6 months or more for older patients and the longer we have to wait, the harder it will be. Right now, she has been forced to make the decision to take time off before starting college so that she can have this major spinal surgery and have time to heal and recover. The surgery needs to be done soon.
Victoria has had scoliosis since she was 7 and has done everything that the doctors have told her - including intensive rehab and physical therapy - to try to keep it under the surgical threshold. We thought that she was "safe" and had avoided surgery. But, unfortunately, her scoliosis has progressed. Her top (thoracic) curve is now over 60 degrees. She has a large rotation (twist) of 24 degrees in her spine. Scoliosis is not supposed to progress after you are done growing, but thanks to her connective tissue disease Victoria's curves have quickly jumped over 15 degrees putting her in extreme pain and necessitating surgery. Her combined S curves now total more than 100 degrees of curvature in her back. We have been traveling and consulting with several of the country's best surgeons and they are all in agreement that surgery is now unavoidable. And this is her best option.
Because of her unique situation (curve progression to surgical point after skeletal maturity and large rotation), there are only 2 teams of surgeons in the country that can perform the operation that she needs. This Anterior Scoliosis Correction surgery will preserve her spinal mobility as well as using vertebral disc release and rib resection (removing sections of 5 ribs) to be able to straighten her curves more, de-rotate her spine and help her ribs spread back out and return to their normal position. This innovative operation is a variation of the VBT surgery pioneered at Shriner's Hospital in Philadelphia for younger patients who still have a significant amount of growth left.
The surgery is approved and covered by insurance, but the surgeon (as I previously mentioned there are only two in the US who do it) is out of network with our insurance. Out of network and out of state means the insurance pays very little. We have no choice but to try to fundraise. Our out of pocket for is going to be minimum $49,000 plus travel expenses to NYC and follow up care. (The entire surgery plus hospital fees will likely be around $300,000). Neither surgery team that performs this surgery in the US is in network with our insurance.
Below is a link to the surgeon and more information about the operation that Victoria needs.
https://www.scoliosisassociates.com/