Ava’s Surgery For Her Scoliosis

This is Ava, an active 15-year-old who loves music.  She plays the ukulele, guitar, piano and is a Singer-Songwriter.  She spends hours playing the guitar and piano every week, sometimes practicing for 4 -5 hours at a time.  She is a kind and generous soul whose goal is to have a career in music.

At age 12 Ava was diagnosed with mild Adolescent Idiopathic Scoliosis.  Scoliosis is a curvature of the spine and is typically noticed when rapid growth occurs.  The exact cause is unknown.  Her doctors told us to wait and watch.   Even though we were monitoring Ava’s back, during one of her growth spurts her back rapidly worsened and her curve bent to 52 degrees it also has twisted a great deal causing her daily pain.  Curves that reach 50 degrees are more likely to progress 1 degree a year eventually affecting the lung and heart function, and causing back pain and disfigurement. 

Although the Texas orthopedic surgeons agreed that ASC surgery was great, they are currently only knowledgeable in spinal fusion.  Studies show spinal fusion changes the normal motion of the spine which cause more wear and tear on the vertebrae above and below the fused segments which leads to degeneration.  A high number of fused patients end up needing revision surgery. The recovery can take up to 6 months while waiting for the bones to fuse.  The surgery may have major complications such as blood loss, possible nerve damage, chronic pain and the risk of the rod breaking. Also, with fusion the twisting of the spine can not be fully corrected.  We could not accept this option. 

We found a group of doctors on the East coast that perform the much less invasive surgery called Anterior Scoliosis Correction (ASC).  Unlike fusion, ASC surgery spares the back muscles and could be reversed in the future if advanced Scoliosis research came about. ASC uses screws placed into the vertebral body and a cord is attached to each of the screws. The back is straightened and set screws are tightened correcting the curvature. The doctors are able to untwist the spine and the curve shows an immediate improvement after surgery and continues to remodel over time, similar to the effect of braces on teeth. The back retains full range of motion.

Because of her age, Ava is only a candidate for 2 surgical teams in the USA, both of which are out of network for insurance.  No one in Texas performs this complicated surgery. The 2 teams on the East Coast are currently training other doctors in the USA and worldwide to do this operation which is looking to replace fusion in the near future. 

On January 2, we visited the ABC doctors in New Jersey; Dr. Antonacci, Dr. Betz and Dr. Cuddihy.  They said Ava was the perfect candidate for ASC surgery with an 8 week recovery time.  With Ava being only 15 and her whole life ahead of her it is important to take her surgery options very seriously and weigh the options of ASC vs. fusion.  We decide that ASC was the only route that we would want to take for Ava.

Website for Ava's amazing doctors  https://www.spineandscoliosis.com/ 

ASC is a very complicated surgery.  We were told 11 people would be in the OR, including a neuro-monitor who monitors the nerve conduction the entire time as a precaution to protect the spinal nerves.   The surgeons’ fees alone are over $60,000 and not covered by insurance. This does not include the cost of the 5 day hospital stay in the ICU,  the anesthetist nor a 1-2 week extended stay in a hotel near the doctors for post op monitoring and plane fares back and forth to Texas.  This is a huge financial burden on us and we are trying to figure out how to finance the surgery.

After talking with a dear friend, I found that people wanted to help Ava on this journey. We decided to start a Go Fund Me for anyone who wants to help Ava in her journey to a straight and healthy spine.  

We will update her journey here as she heads out to New Jersey February 27th for her surgery February 28th.  

Thank you so much for reading her story.