Emily's Scoliosis Journey
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Emily Foster is a beautiful, happy and active 14-year-old. She is very passionate about her family, friends, school and sports. She plays volleyball and tennis, is a member of the National Honor Society and has recently started to pursue modeling.
In just a few short weeks, Emily and her parent’s will be traveling from their home state of Michigan to New York where she will be undergoing an 8-hour surgery to correct the curvature in her spine. Here is a condensed version of her story.
At Emily’s 11 year old wellness visit her pediatrician found her spine to be curved upon exam. Her parent's were referred to a local orthopedic surgeon where she was diagnosed with idiopathic scoliosis. The scoliosis started out as mild. Over the past three years her spine was monitored and it progressively continued to get worse. Emily was fitted for a brace during this timeframe and wore it faithfully every night. Unfortunately it was not successful in reducing or slowing down the progression of her curve.
At Emily’s follow up visit in February of this year, her orthopedic surgeon told Emily’s parents that her S shaped thoracic and lumbar curves had advanced to near 50 degrees. They also learned that her curve would continue to progress at the rate of 1-2 degrees per year if nothing was done to correct it including future health implications affecting her lungs and heart. The surgeon told her parents that the only option for Emily was to have her spine fused from T3 - to L4, which would be most of her spine. As a result of fusion, Emily would be stiff and lose flexibility. Bending over to tie shoes would be difficult. Playing volleyball at a high level would likely not happen.
During spinal fusion, a surgeon places bone or a bonelike material within the space between two spinal vertebrae. Metal plates, screws and rods may be used to hold the vertebrae together, so they can heal into one solid unit. Recovery can take up to a year while waiting for the bone to fully fuse.
The surgery is very invasive with several risks including increased risk for infection, blood loss, nerve damage and chronic pain. Fusion also changes the normal motion of the spine and results in more stress on the vertebrae above and below the fused segments. As a result, long-term complications include degeneration at these adjacent spine segments. Also, rods have been known to break and this would mean revision surgeries in the future.
A few days after the family learned that surgery was necessary and not knowing that there were other options out there, Emily’s Papa saw a segment on Good Morning America. The segment featured a young lady with scoliosis who was a professional dancer. She had to quit dancing b/c of the pain it was causing her. An orthopedic surgeon based out of New York, Dr. Lonner, operated on her but instead of fusion he performed fusion-less surgery to correct the curve in her spine. After surgery she was able to continue dancing with continued flexibility and was pain free.
The procedure is called ASC (Anterior Scoliosis Correction), a Motion Sparing Scoliosis Treatment, it’s a procedure where; “Titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis; a rod-cord (white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curves(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels”. Recovery time is minimal with an average hospital stay of 5 to 7 days with kids/teens usually back to school within 3 to 4 weeks and back to sports shortly thereafter.
Emily’s parent’s were initially resistant to this procedure because while it has been performed for over 10 years in the United States, there are still studies being done and it is not yet FDA approved. Despite this they were compelled to watch the segment. It sounded too good to be true. After doing more research on the procedure, they decided to pursue this option.
There are a handful of surgeons performing this type of surgery in the United States with different parameters for accepting patients. The idea is to have the surgery while kids have a lot of growth left. With Emily having reached her growth potential, her odds were slim. Despite this, the family did some traveling, and saw two other surgeons who perform this procedure and were told that she was not a candidate due to the fact that she was done growing.
Not wanting to give up, they turned to Dr. Lonner for his expert opinion knowing he was only one of a few surgeons worldwide who perform this procedure on more mature spines. To the family’s joy, she was confirmed a candidate for anterior scoliosis correction, the fusion-less approach.
The main reason they did not go straight to Dr. Lonner is because he is out of network with their insurance. Traveling to New York, paying surgeon fees out of pocket, and staying there while she recovers is going to be a major expense. Surgeon fees for Dr. Lonner and the thoracic surgeon are costing the family $65,000 in addition to hotel and travel costs. Also, despite the hospital being in network, the family is responsible for 20% of the overall cost of the hospital stay.
Despite this financial burden, the family will be traveling to New York in a few short weeks. A surgery date is set for November 21st and the family is scrambling to gather funds for Emily.
The family is determined to make this dream a reality for Emily. While there are still many unknowns there are two things that are for certain. 1. There is no cure for scoliosis. 2. It is impossible to un-fuse a fused spine. With Emily being only 14, there is a lifetime of medical advancements in her future. By leaving her discs and spine as natural as possible given the situation, they are hoping that they are providing options for her future while stabilizing her curve for now.
Emily and her family want to maintain her flexibility to allow her to continue doing what she loves without limitations, no matter the cost. Will you help them to ease some of the financial stress?
Thank you for taking the time to read this and for your support and prayers. If your not able to donate, please share their story. The family will provide updates on Emily’s journey.
In just a few short weeks, Emily and her parent’s will be traveling from their home state of Michigan to New York where she will be undergoing an 8-hour surgery to correct the curvature in her spine. Here is a condensed version of her story.
At Emily’s 11 year old wellness visit her pediatrician found her spine to be curved upon exam. Her parent's were referred to a local orthopedic surgeon where she was diagnosed with idiopathic scoliosis. The scoliosis started out as mild. Over the past three years her spine was monitored and it progressively continued to get worse. Emily was fitted for a brace during this timeframe and wore it faithfully every night. Unfortunately it was not successful in reducing or slowing down the progression of her curve.
At Emily’s follow up visit in February of this year, her orthopedic surgeon told Emily’s parents that her S shaped thoracic and lumbar curves had advanced to near 50 degrees. They also learned that her curve would continue to progress at the rate of 1-2 degrees per year if nothing was done to correct it including future health implications affecting her lungs and heart. The surgeon told her parents that the only option for Emily was to have her spine fused from T3 - to L4, which would be most of her spine. As a result of fusion, Emily would be stiff and lose flexibility. Bending over to tie shoes would be difficult. Playing volleyball at a high level would likely not happen.
During spinal fusion, a surgeon places bone or a bonelike material within the space between two spinal vertebrae. Metal plates, screws and rods may be used to hold the vertebrae together, so they can heal into one solid unit. Recovery can take up to a year while waiting for the bone to fully fuse.
The surgery is very invasive with several risks including increased risk for infection, blood loss, nerve damage and chronic pain. Fusion also changes the normal motion of the spine and results in more stress on the vertebrae above and below the fused segments. As a result, long-term complications include degeneration at these adjacent spine segments. Also, rods have been known to break and this would mean revision surgeries in the future.
A few days after the family learned that surgery was necessary and not knowing that there were other options out there, Emily’s Papa saw a segment on Good Morning America. The segment featured a young lady with scoliosis who was a professional dancer. She had to quit dancing b/c of the pain it was causing her. An orthopedic surgeon based out of New York, Dr. Lonner, operated on her but instead of fusion he performed fusion-less surgery to correct the curve in her spine. After surgery she was able to continue dancing with continued flexibility and was pain free.
The procedure is called ASC (Anterior Scoliosis Correction), a Motion Sparing Scoliosis Treatment, it’s a procedure where; “Titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis; a rod-cord (white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curves(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels”. Recovery time is minimal with an average hospital stay of 5 to 7 days with kids/teens usually back to school within 3 to 4 weeks and back to sports shortly thereafter.
Emily’s parent’s were initially resistant to this procedure because while it has been performed for over 10 years in the United States, there are still studies being done and it is not yet FDA approved. Despite this they were compelled to watch the segment. It sounded too good to be true. After doing more research on the procedure, they decided to pursue this option.
There are a handful of surgeons performing this type of surgery in the United States with different parameters for accepting patients. The idea is to have the surgery while kids have a lot of growth left. With Emily having reached her growth potential, her odds were slim. Despite this, the family did some traveling, and saw two other surgeons who perform this procedure and were told that she was not a candidate due to the fact that she was done growing.
Not wanting to give up, they turned to Dr. Lonner for his expert opinion knowing he was only one of a few surgeons worldwide who perform this procedure on more mature spines. To the family’s joy, she was confirmed a candidate for anterior scoliosis correction, the fusion-less approach.
The main reason they did not go straight to Dr. Lonner is because he is out of network with their insurance. Traveling to New York, paying surgeon fees out of pocket, and staying there while she recovers is going to be a major expense. Surgeon fees for Dr. Lonner and the thoracic surgeon are costing the family $65,000 in addition to hotel and travel costs. Also, despite the hospital being in network, the family is responsible for 20% of the overall cost of the hospital stay.
Despite this financial burden, the family will be traveling to New York in a few short weeks. A surgery date is set for November 21st and the family is scrambling to gather funds for Emily.
The family is determined to make this dream a reality for Emily. While there are still many unknowns there are two things that are for certain. 1. There is no cure for scoliosis. 2. It is impossible to un-fuse a fused spine. With Emily being only 14, there is a lifetime of medical advancements in her future. By leaving her discs and spine as natural as possible given the situation, they are hoping that they are providing options for her future while stabilizing her curve for now.
Emily and her family want to maintain her flexibility to allow her to continue doing what she loves without limitations, no matter the cost. Will you help them to ease some of the financial stress?
Thank you for taking the time to read this and for your support and prayers. If your not able to donate, please share their story. The family will provide updates on Emily’s journey.
Organizer
Foster Family
Organizer
Ferndale, MI
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