First post:
Jan 15, 2018 Latest post:
Sep 15, 2018
On December 27, 2017 I was diagnosed with Charcot Spinal Arthropathy (CSA) Disease. This is a catastrophicly rare and degenerative destructive condition that affects the joints in my spine. It is progressive and I am in the early stages. For me it has occurred secondary to my T5 spinal cord injury. Charcot Spine is caused by a combination of a previous spinal fusion, loss of sensation below the fusion, and repeated, excess stress on the vertebrae below the fusion. My team of 18 doctors at Mayo Clinic made this discovery after 7 months of painful x-rays, 3D CT scans, and MRIs. They found multifocal vertebral lesions (disappearing vertebra that was reabsorbed in my body) at the place where my rods end in my back. (I have had titanium rods for 25 years, they start at T3, lower neck and end at T10 mid back, they were used to stabilize my back during initial injury). I have the feeling of instability in the sitting position and spinal deformity with severe deep pain. I have developed automatic dysreflexia, which feels like impending doom. and massive bone destruction and resorption. I a grateful that Mayo Clinic is in our “backyard!” At the time of the discovery I was being treated for my for a C-Shaped, 57 degree Curved Scoliosis (if you have’t noticed you are blind because I sit like a hunched back ninja turtle, lol). I knew that I would eventually need to have surgery to fix my Scoliosis but never had I dreamed that I would have been told that I had something debilitating. I was told that I have 8 years to live if a plan of action is not taken quickly. My team of 18 doctors from Othro, Colon/Recal, Rehabilitation and Phycology have quickly come up with a treatment plan that I signed my name on the dotted line too. The treatment is complete reconstruction of my spine from T10 to my pelvis with rod extending from T10 to my pelvis. I will still tall and rigid. They will do a major reconstruction of my spine bu built cages, bridges, discs and shims that will be connected to my already in place titanium rods. New rods will be linked and bolted to my pelvis. This will be completed over 6 day with 3, 8 hour operations. It’s devastating to hear that they are 80% certain that something will go wrong. This could be a heart attack or stroke. It’s also extremely paralyzing. So what will this mean for me. I need of a minimum of four difficult life threatening surgeries at Mayo Hospitals in Rochester, Minnesota and a year long rehabilitation and recovery in order to live and remain teaching. My first surgery will be March 22nd, 2018. I will go through three months on bedrest and rehabilitation at Mayo’s Mary Bri Unit and until a total of six months bed rest, learning how to sit up again by myself, learning to balance, new transfers, how to get dress and learning to be mobile independently. My first surgery will be on March 22, 2018 for a 5 hours surgery for a irreversible colostomy, with 7-12 weeks of recovery. Then in Mid June 18, 20, 22 I will undergo the 3, 8 hour surgeries to majorly reconstruct my entire spine. They will be long and draining on my body. Two words can sum up may feelings…
Living Brave, Amanda and Family
"The battle is not yours, but Gods." 1 Chronicels 20:15
