Wednesday, May 3, 2017

Where My Problems Began

I’m Kristy ::waves hi:: I’m a mom to a three year old (she’s a story in itself), a wife to an amazing husband who is a mechanic, a full time worker where I love my job, an avid lifted truck lover, and basically a lifetime disabled person.  I’ll share my past journey through 19 surgeries, soon to be 20, my disability experiences throughout the course of my 31 years of life, my elective amputation that will be happening here in July, and how I got to my big lifted SEMA truck build.  You’re probably wondering how it all ties together, but trust me, it does and I’ll get to that.  But first, my back story.

At the age of 5 I was diagnosed with a benign spinal cord intramedullary astrocytoma.  Wtf is that, right?  Basically, a non-cancerous blob of crap that wreaks havoc on the body.  Spinal cord tumors are rare, even more so than brain tumors.  They account for around 1 in 1,000,000 people every year.  Mine was even more rare because it grew on the INside of the cord vs. the typical tumor that grows on outside of the cord or wrapped around it.  The rarity being, I had better odds of winning the New York Lottery than having this type of tumor in the location that it grew.  The inside is worse because in order to remove it, they have to remove bone and cut into the spinal cord. 
At first I was misdiagnosed with night terrors.  I was screaming and crying at night from the pain being caused by the pressure of the tumor.  Because of that misdiagnosis, the tumor had grown to about the size of a golf ball.  My first operation was in St. Louis, my home town and where I currently live.  The neurosurgeon was young and inexperienced with this rare of a tumor.  He was able to get about half before he was too afraid to go any further for fear of damaging my mobility or paralyzing me.  Then he called in the big guns.  And by big guns, I mean, Dr. Fred Epstein, an internationally renowned pediatric neurosurgeon credited for the development of pioneering neurosurgical techniques to treat children threatened by brain and spinal-cord tumors.  At the time, Dr. Epstein was the only one willing to operate on me.  If you think of how far technology has come now, it wasn’t the same back then, but he helped make it better by developing technology that allowed a surgeon to remove tumors in delicate areas of the nervous system that had previously been considered inoperable.

I was roughly 9 when I flew to New York for the first time and my 2nd tumor surgery.  Dr. Epstein was able to get almost all of the tumor but I ended up in a wheel chair after along with a leg brace.  Over the course of recovery while learning how to walk again with limited mobility and severe nerve damage, my tumor was already growing back.  Within the next year or so, I flew back to New York for my 3rd tumor surgery where Dr. Epstein operated again.  I remember being wheeled into the operating room on a stretcher.  He stopped to talk to me and gave me a hug where I was able to thank him.  Instead, he said, “Thanks for making us both look good.”  
He would later write a book called, “Gifts of Time” about the children he operated on. There’s a chapter in the book very similar to mine, and he autographed it with that phrase.  The 3rd and final tumor surgery, he was able to remove all of my tumor except for some residue.  Once again, I ended up in a wheel chair, far worse off that I was before due to another cut into my delicate spinal cord.  I also immediately started 28 doses (my lifetime max) of radiation treatment to kill any of the cells to stop the tumor from growing back again.  Over the next 10 years there was a 30% chance of regrowth or secondary tumors, which I constantly feared, but never had and it never grew back.  He saved my life.  I had finally won. 

You’re probably thinking, “ok, so what does her spinal cord have to do with her leg?”  Well, your spinal cord is your body's central nervous system. The brain is the command center for your body, and the spinal cord is the pathway for messages sent by the brain to the body and from the body to the brain.  So every time they went into to cut my tumor out, they were cutting those messages from my brain to my leg, damaging nerves and pathways for messages to be sent to the rest of my body.  The messages that were supposed to be telling my leg to grow and how to properly grow, how to move the muscles to move or walk, telling it to have blood flow or to feel finger tips touching it, were no longer being sent or received.  Since those messages were cut off, my leg no longer worked properly.  And so began my leg troubles...

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