Allie's EDS/Chiari Misadventure

The Medical Side

I was born November 11, 1985 to my mom, Kim.  I am an illigitimate Child, and while my father was in my life to some degree at a young age, I did not remember nor truly meet him again til I was 18.  When I met my dad and learned of his life, it was an amazing eye-opener.

Right out of the gate I had ear infection issues (called Otitis Media), and at 10 months old had to have Typanostomy Tubes put in my ears.  This whole issue caused significant hearing loss, and led to the discovery of my Twisted Eustatian Tubes.  I had suffered from ear infections and strep throat throughout most of my childhood and early teens.  I played sports and sang, went camping often and enjoyed life.   I spent my childhood hyper-flexible and began subluxing my knees at age 8.  By age 13 I was dislocating knees and shoulders easily.  At age 14 had my enourmously large tonsils removed. In 2001 at age 15 I had my first joint stabilizing surgery, Patella Relocation on my left knee.  At 19 had my right knee done. I was told in about 10 years I would have to have both done again - and they were right!  As I grew, my ligaments and tendons continued to stretch, because my ability to produce collagen is flawed, with no elasticity (like a rubber band that's lost it's ability to snap back to it's form).  
When I turned 19 I began having memory and alert-ness issues.  I was often unreasonably tired.  My memory was touch and go on things I'd always been great at remembering.  College became a big issue.  Went from being straight A to struggling for B's and C's, and though my comprehension was good, my long term memory wasn't.  

At age 20 I was mis-diagnosed with Rheumatoid Arthritis.  I began seeing a Rheumatologist for the first time, who re-diagnosed me with Sjogren's Syndrome.  I continued to struggle with alert-ness and joint issues, Fibromyalgia and dry mouth/eye/mucous membranes.  I contracted the Systemic Plague from hiking through a prarie dog colony, and spent the next 2 years fighting it off. At 7 months pregnant at age 21 I had a very simple fall in the parking lot of a hospital.  Somehow I managed to severely screw up my left shoulder.  Once my son was 3 months old, I had the first of 2 shoulder surgeries on my Left shoulder.  We re-stabilized (which was always an issue) and during recovery I fell and tore out everything the surgeon had done.  Upon going back in 2 weeks later, they found bone fragments embedded in my scapular muscle region from an injury as a child.  They also found bone fragments in my cervical vertebrea upon imaging.  

At age 23 things began to take new shape.  I was misdiagnosed several times and over the next 5 years I underwent many different treatment plans.  In the long run, I have Mast Cell Disease, Ehlers-Danlos, PANDAS, Chiari Malformation, Occult Tethered Cord, and more.

Today, I am 28 years old.  I spend a lot of my time researching.  I have opened and had to close my business', and in January of 2014 I applied for SSA disability.  I now get to be a stay at home mom, which takes a lot of adjusting to for a workaholic like me, but I enjoy it.  The best advice I've ever received from one of the few doctors who at least listened, even if he didn't help... was to become my own advocate.  In November 2013 a friend Doctor of mine suggested EDS - which I had never heard of - and everything began falling into place, as my joints and vertebrea continue to fall out! 

Today, the mission is 100% about balance.  Finding balance is key to anyones happiness and survival, but it's even more so for people with Connective Tissue Disorders.  The collagen I produce in my body is unhealthy, and since collagen makes up every tissue in the body, basically, everything is wrong.   

Today I struggle with hyperextensions, dislocations, and the slew of new symptoms I've developed with Chiari Malformation and my other issues. My memory problems and positional pinching of nerves keep me from working right now, but should improve with surgery. I need a series of 4 surgeries to stabilize my current condition, including a fusion surgery will re-stabilize my spine, which should allow me out of the wheel chair. I need a special neck brace to ward off the compression of my discs and issues with Chiari until the surgery, and have to adjust my home and add mobility assistance devices in order to live in it. We are in the process of planning a future move, potentially to Maryland or nearby, where the first ever Ehlers-Danlos Clinic is being opened at the Greater Baltimore Medical Center. My immediate goal is to get to The Chiari Institute in New York, where Dr. Bolognese has agreed to take my case! He is one of only 3 specialist in the US equipped and experienced enough to help my situation.

ABOUT ME, & MY AMAZING FAMILY