Help Me Get My Life Back and Bring Awareness!!

PLEASE-This is very long but I beg you, PLEASE READ.. even if you don't Donate, just read it for your own knowledge and awareness about a Condition that I feel isn't as Rare as its made out to be, as I feel it could save people from the suffering I'm going through if there were more people to Advocate for them!!

Hello!! My Name is Ashley and I AM A SURVIVOR, Surviving, and a Self-Advocate!! Sorry this is so long PLEASE READ ALL!!

For the past 14+ Months I have pushed through what I felt was a never ending Hell to be seen, be heard, and to STAY ALIVE and I do not use any of those Words lightly!!

For 37 years, I was a relatively Healthy person? I was active but not the best at Dieting, nothing that would be alarming, in any sense.. I worked, ALOT!! Usually 7 days a Week, 70+ Hours a Week.. most would call me a Work-A-Holic, but I just didn't want to struggle living Paycheck to Paycheck, as I take care of my 4 Kids on my own and I refuse to ask for a handout (the irony of making a GoFundMe, right?)

But March 29, 2022 at 11:53pm all of that changed.. my entire life changed, and with that, my Family's lives changed with what I consider an unfortunate blessing and a curse.......

My Friend called and texted me from Downtown Orlando.. he was drunk and stranded and needed a ride Home.. I picked him up and drove him Home in Mount Dora.. on the way there, he had fallen asleep in the Passenger Seat.. when we got to his House, it took about 20mins for me to wake him up, I then started reaching in my backseat to grab his things to hand to him and he started to Attack me.. Whether the Attack was Malicious or Reative because I had just woke him up, I feel I will never know, all I know is that I didn't deserve anything that happened to me, and continues to happen....

The initial hit was to the left side of my Neck/Throat.. I then sat up and looked at him and he went to hit me again and I turned my head and he hit me in the right side of my Neck/Throat.. that is when I went into the Fetal Position in my Driver Seat and looked at the Clock, 11:53, that's when the hits to the Head and Torso/Ribs began and that's pretty much the last that I remember......

.....FOR 6 MONTHS.....

I call it my 6 Month Nap, I've always used Comedy to cope with Trauma.. but for that 6 Months I remember a lot of Darkness.. I can look at Pictures, read Messages, or if I get deep enough into a Conversation, then I can start to remember certain things.. but I can not FEEL the Memories or put myself in those exact Memories within those 6 Months!! Sometimes I'm afraid that those Heartfelt Memories may be gone forever, but I am currently working with several Specialists and have been to 3 different Neurologists while still seeking one who can actually help me!!

But, within that 6 Months, I WAS NOT Napping.. it was the complete opposite!! I was in Fight or Flight!! I was Fighting for my Life, all while holding a Job (the best I possibly could) to ensure that my Kids were taken care of....

About 2 Weeks after the Attack I started having pain in my Throat and trouble swallowing (through looking back on Conversations with my 2 Friends that I stayed in contact with throughout my "Nap" and my Family as well as Hospital Notes), it finally started to become unbearable around May 13, which is when my battle with the Emergency Rooms began.. after an XRay and being sent Home for Allergies, I then went to a different Hospital 5 days later when I was unable to even swallow Liquids.. I was then Admitted and had an Esophageal Dilation which relieved some issues, but I was still unable to Swallow Food.. I still felt as if I had a broken bone in my Throat, but every Emergency Room DR continued to tell me that there are no bones where I was pointing.. at the beginning of June I was finally referred to a Pediatrician/Nurse Practitioner by a Friend who would actually LISTEN and BELIEVE me as I was literally wasting away, losing weight daily, I would be out of Bed long enough to go to Work and come Home and go right back to Bed.. she had sent me to an ENT who did a Nasal Endoscopy, which only seemed to make my Symptoms worse.. June 28th, I ended up back in the Emergency Room, where I was COMPLETELY disregarded by the DR.. there was an XRay done, from a different angle as before, and the Radiologist actually found a "Foreign Object" in my Throat, but the DR still released me.. looking at the actual Image of the XRay, you can visibly SEE the broken bone.. the Pediatrician that was helping me had written a Referral for me to have a CT Scan, which was preformed July 6 and that's when everything finally started to fall into place for me!! STYLOID PROCESS CALCIFIED TO/BEYOND HYOID BONE!! Due to the Trauma to my Throat during the Attack, that Calcified Styloid Process formed into something called EAGLE SYNDROME, a Rare Condition that only affects 4% of the Population (or that's all that is Medically known about it unfortunately).. and I, in fact, DID have a broken bone in my throat..

The Pediatrician didn't know what any of that meant, but she wrote me a Referral for a Specialist and wished me Good Luck......

August 9, I was officially diagnosed with Eagle Syndrome.

August 17 I met with a Surgeon that agreed to do my Surgery to remove the Calcified Styloid Processes from both sides, in 2 separate Surgeries....

September 26 I had my 1st Surgery (called a Styloidectomy) on the Left Side removing the Broken Pieces.. after this Surgery was when I WOKE UP from my "Nap" and began to feel alive again (and about 60lbs smaller)!! I tried to return to Work a Week after the Surgery and unfortunately, I wasn't able to.. all I knew was that I was awake, and I realized that my Kids had just went through the same 6 Months of Trauma, but in a different sense..

November 14 I returned for my Surgery on the Right Side in hopes of a full Recovery and getting my life back!! Unfortunately, that had been the furthest from the truth!!

I was able to return to Work 4 Weeks after the 2nd Surgery, and have continued to Work throughout everything, while rebuilding my Relationship with my Kids, and trying to once again, Advocate for myself and just figure out what is going on...

Neurologically, I have since learned that I had a Stroke on the Right side of my Brain, Neuropathy, and Post Concussion Syndrome and still no concrete answers as to why I can not remember 6 Months of my life...

Physically, I felt as if my Symptoms were getting better as far as the Eagle Syndrome, but that was short lived.. I kept being told to "trust the process" but I can only trust it for so long and in February, I ended up back in the Emergency Room, feeling as if I couldn't swallow and was being stabbed in the Throat, indescribable pressure in my head, throat and neck, and ringing in my ears sooo loud that it just sounded like someone was screaming inside of my head and I couldn't take it ANYMORE!! They did a CT Scan and recommended another Esophageal Dilation and sent me Home..

February 16, I underwent my 2nd Esophageal Dilation.. but still, no answers.....

I went from a busy body Woman that could raise all of her Children and then some, on top of Working 70+ Hours a Week, to a weak, unhealthy person that just wanted to live!!!

So, I got in touch with the only Revision Specialist in the United States for Eagles Syndrome, Dr Trevor Hackman, in Chapel Hill North Carolina and I Scheduled an Appointment.. I saw him on May 11 and he explained to me that my first Surgeon left so much of the broken Styloid Process behind.. its still Calcified down my Esophagus and to my Hyoid Bone, and it appears as if nothing was removed with my 2nd Surgery at all!! I knew that something was wrong, I know my Body and I refused to stop fighting.. no matter how "RARE" the Condition is.. or how Bizzare that story is behind it!! I deserve to be heard!!

So now that I have answers, and hope, seeing *THE* Specialist for the Condition that I have!! I feel that I can finally be the Mom and the Woman that I need to be!! I have so much life to live and I refuse to live it like this!!

I will be flying to North Carolina on Sunday June 18 for my Surgery on Monday, the 19. He will be doing a Bi-Lateral Styloidectomy and Parotidectomy. I will be In-Patient at UNC for 1-2 Days and then flying Home afterwards.. due to this being a Revision Surgery, and both sides at the same time, I won't be able to return to Work for a while, I just want to make sure that I'm able to maintain my Household so that I can properly heal and allow my Brain to heal from everything it has endured as well.. but most importantly, I just want to be by my Kids side because they need me right now, more than ever, and I want to be able to properly get better!!!

Feel free to reach out about any questions about Eagle Syndrome or unfortunately authenticity of my story, as I understand that it is a very hard situation to understand, as, I have been trying for a while to find the right words to actually put together to reach out for help!!

Thank You!!