Ellie's Treatment at Mayo Clinic

Thank you to our friends and family who have come together and provided overwhelming support. We now have a clearer picture of costs. We will have to pay for the treatment, housing, cost of living, renting a car, flights, etc. Here is some background/my story: I had a spinal fusion in March of 2019 to correct congenital scoliosis. After waking from surgery, I lost feeling and control of my left leg, so I had a second surgery that same day. Although we were told the surgery was "successful", I quickly developed pain, nausea, and insomnia that never went away. After 8 months of unsuccessful treatments in Austin, Dallas, and Houston, we went to Boston Children's Hospital. I was finally diagnosed with Central Sensitization Syndrome (CSS), a rare central nervous system disorder. CSS is permanent, but the Mayo Clinic has a program that will teach me to manage and reduce the severity of my condition by as much as 50%. I had been on the waiting list since December for the Pediatric Pain Rehabilitation Center at Boston Children’s and had finally been accepted after a few months. Days before leaving, we got a call from one of my doctors in Boston who said that my screws were loose, a bone fragment was sitting on my nerve root, and my spine never fused. He said I would need a series of surgeries that can not be done at Boston Children’s due to the risk factor. We started working with The Mayo Clinic and quickly formed a plan after learning more about what was going on and getting new diagnoses. My team of surgeons will preform the first surgery going in through my low back and replacing all the hardware. Then the second surgery, they will go in through my low abdomen to refuse L5-S1, and go back in again though my low back to do a new fusion on L4. They aren’t sure if they will need to remove the bone fragment or not, they will know once they get in there. Currently, my surgeries are August 5th and 7th. All 5 of us leave for MN on July 31st. We have set up a Caringbridge site to keep everyone updated during my surgeries/hospital stay and recovery that I will link down below. Thank you all for your generosity. https://caringbridge.org/visit/ellietaylor2