Help Bring Anna's Back Back

Hi! My name is Anna and when I turned 16 years old I was diagnosed with scoliosis during a routine physical exam.  At that time I had no clue what was in store for me and how physically, mentally and emotionally draining my chronic back pain would eventually become.

Over my lifetime, I have gotten regular yearly physicals and other checkups and the scoliosis did not appear until I was getting close to finishing growing.  At the time, the “good news” was that the curve of my spine was small and did not require surgery, bracing or other treatments.  Also, since I was nearing the end of puberty, studies showed, and my doctors agreed, that the curvature of my spine was unlikely to increase and unlikely to have any negative effects throughout my lifetime.

Unfortunately, over the next 3 years (from age 16 to 19) I continued to grow taller and the curve of my spine continued to get worse. I began to notice back pain that gradually increased in intensity from year to year and the impact to my daily life more and more.  Since around the time I turned 19 years old, I have been dealing with daily chronic back pain.

Almost two years ago (after I turned 19 years old) the curve of my spine measured approximately 38 degrees and a scoliosis surgeon recommended spinal fusion.  Spinal fusion is the traditional surgical treatment for scoliosis and has been used for over 40 years to straighten curves exceeding 40 degrees.  As the surgeon described the invasiveness of putting two rods, lots of brackets, and several screws in my back, my mom and I cried and worried.  This highly invasive surgery requires a minimum of six months recovery time and results in physical limitations for the rest of my life.  The surgeon recommending spinal fusion even admitted that this procedure was not guaranteed to relieve my back pain (he said those rods in my back might actually increase the pain!)

We decided to get a second opinion and also dive into all of the scoliosis research we could dig up.  We found studies from the National Institutes of Health (NIH), American Medical Association (AMA), Scoliosis Research Society (SRS), and the Mayo Clinic.  The second opinion as well as all of the studies indicated that I was in a “gray area” for recommending spinal fusion surgery and questioned whether the resulting benefits were worth spinal fusion.  In fact, several studies even confirmed that spinal fusion doesn’t always relieve back pain and could actually cause more back pain.  My second spine surgeon and I agreed to not pursue spinal fusion surgery. For the next two years I worked on my flexibility and core strength to improve/limit my back pain from the scoliosis. I went to weekly physical therapy sessions and got steroid shots when the pain was unbearable but these provided only temporary relief.

The chronic back pain continued and ultimately contributed to my decision to quit the UNC Women’s rowing team after one semester.  Everyday I struggle with carrying my backpack around campus and try to live with the chronic pain as best I can.

During the past year we began to intensively research other treatment options for scoliosis and found that after decades of little to no change, some breakthroughs are actually happening.

A friend referred me to a girl about my age who was getting a new type of scoliosis surgery called ASC (Anterior Scoliosis Correction).  My physical therapist also recommended the same procedure.  This new surgical technique does not use rods and is significantly less invasive than traditional spinal fusion.  The new treatment has been performed on children over the past 10 years and on adults for the past 5 years.  The new treatment benefits children and young adults who have a long active life ahead of them and has shown to significantly relieve back pain due to scoliosis.

The challenge I now face is that insurance companies have not yet caught up to covering this new scoliosis treatment option.  There are only a handful of ASC surgeons around the world who perform the procedure on young adults and most  insurance companies typically don’t yet cover the surgeons fees.  The hospital is considered in my insurance network so the “hospital stay” expenses are mostly covered by insurance (minus all the deductibles). However, the surgeon is considered “out of network” so I am responsible for the entire fee of $50,000.

My ASC surgeon, who is the worldwide leader in young adult ASC surgery, Dr. Antonacci, is based in Lawrenceville, NJ.  We visited him in December to discuss how ASC would correct my scoliosis and relieve my chronic back pain.  We were extremely impressed with Dr. Antonacci and even talked with several of his current patients who were getting post operation follow-ups that day.  Every one of his patients that we talked to were in their teens or early twenties, very active, pain free, and looking forward to a long life without the limitations of scoliosis (or spinal fusion surgery).  To date, Dr. Antonacci has performed over 500 ASC procedures and he told us that he would never perform a spinal fusion again.

I am currently scheduled for ASC surgery with Dr. Antonacci in mid-May and still struggling to figure out how to cover the surgeon fee.  It’s been stressful trying to prepare for a life changing surgery while also recognizing that it comes with an overwhelming financial obligation that will be with me for a long time.  I know you have me in your thoughts and prayers and hope you can help me with some of the surgeons fees.  I have set up this site to let you know how I am doing and hope you can help in some way.  Thank you!

Below is an excerpt from Dr. Antonacci’s website on ASC:

Dr. Antonacci’s Anterior Scoliosis Correction uses “growth modulation” and “remodeling”– partially restraining one side of the spine to allow growth and remodeling on the other side – to reverse the abnormal scoliosis growth pattern in the anterior thoracic (upper) spine in a less invasive surgery. Titanium pedicle screws are placed on the convexity (outside) of the vertebrae that are causing the scoliosis; a 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 curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.

https://www.spineandscoliosis.com/anterior-scoliosis-correction-asc/