Amanda’s Story

Site created on January 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


#teamtrei  #godisgood #faith>fear

Newest Update

Journal entry by Amanda Trei

Today I sat outside...the sun shinning down on my face. I soaked in the rays of the sun and just allowed myself to be in the present. I didn’t think about the past or the future. I wanted to remember this season. A season of struggle with so much love, support, giving and good. Every high and every low. You see they remind of who I am. There is so much good and I’m choosing joy. No cheeky Red Devils here. Sure there are a ton of things to get me down but with God by my side, how could I not be moved. Let this be my testimony that there is good, no great, all around us. We really just need to see it. Really see it. So stop. Stand there. Breathe in all the things that you are grateful for in this life.



So what exactly does my day look like? Well I’m here to tell you that I went from full independence to complete dependence. I’m on severe bedrest for 22 hours of the day. I get turned every three hours to prevent pressure sore from forming. This happens all day and night. I wear a TLSO back brace (aka turtle shell) all day and get a break when I’m sleeping. It hurts. Point blank. Having a brace that cuts into your pits and does not allow you to bend or twist is uncomfortable but also needed to make sure my back will not break. It’s at a fragile point right now and there is no turning back. Dr. C took all my discs from T5-L2 and replaced them with artificial discs and then added another set of titanium rod along side my already installed rod which are used to stabilize my entire spine.



Through the daily struggles of simple things like reaching for water inches away or having to be dressed, I’ve learned that I love laughing. A lot.



I have complete assistance when getting up for about two hours of the day. Dr. C is very conservative, and I wouldn’t have it any other way. My health is something sacred to me these days. I’ve found ways to pass the time. If you know anything about me, it’s that I have a love for knitting and crocheting. Although sometimes hard to do when laying on your side and not getting bound up by the yarn, I’m making it work.



When life sucks you under and swallows you up whole, you have to kick back , hit the bottom, surface and breathe again. Take a deep breath and exhale.



What I’ve learned Throughout The face of this challenge is that I can choose joy. It’s the hard days that have challenged who I am. I’ve been given the gift of grace and I don’t take it for granted.



All I can do is make the best decision I can at any given time with the resources I have. So while this road right now feels bumpy and scary as hell, I know I will look back on it at some point with the beauty of hindsight and see the aw-inspiring, God provoked lesson in it. I do know that I am strong enough to ride it out and come out the other side even if I might get some cuts and bruises along the way. I believe we get stronger at the broken places. So this is me being honest, struggling, reaching out. Progress not perfection, right.



I’m blessed to be surrounded by deeply empathetic people. I feel all your prayers and I’m grateful from the depth of my heart and soul for all of you. I am so thankful for the patience my family has had with me as I work through this difficult process.



Psalm 65:5 says, You are the hope of everyone on earth. So thankful that Jesus is Our hope. Life can get messy, but the one thing I know is Jesus is where our hope is found. You’ve gotta have hope to cope.







My heart is His.







Living Brave,



Amanda Trei and Family







“Light is shed upon the righteous and joy on the upright in heart.”



Psalm 97:11







#Godhasmyback #schoolfamiliesrock #liveabovetheline #ichoosejoy #mayoclinicmn #faith>fear #hopetocope
#teamtrei


#t5-l2fusion&discreplacement



#charotspinaljointdiease
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