Help Jessica beat her rare syndrome!

Hello! Thank you for taking the time to read my story! Even if you're not in the position to donate at this time, I would love to, first & foremost, educate others about this rare, debilitating condition. My hope is that by bringing awareness, it could possibly help another individual who may be experiencing the same symptoms get the help, education & relief they need.

I would first like to start off by giving a quick, general definition as to what my rare condition is. I will list my symptoms & how this condition effects me below as well.

I have Eagle's Syndrome:

Eagle's syndrome (ES) is a rare entity that is not commonly suspected in clinical practice. The prevalence of individuals with an elongated styloid process in the adult population is estimated to be 4% with a very small percent of these individuals reported to be symptomatic.

There are two types of eagles syndrome; classical & vascular.

The styloid process is a small bone located on the skull base just under the ear & behind the jaw. Every human has them. There is a ligament that attaches to the base of the styloid process. This is called the stylohyoid ligament and it also attaches to the hyoid bone in the neck just above the adams apple. Eagles Syndrome is when the styloid process begins to calcify. Once the calcification starts, it progresses to the ligament until it is fully calcified from skull base to hyoid bone. Basically, it creates a hard bone in the neck where there should be a soft ligament. As you can imagine, this creates pain and wreaks havoc on the surrounding structures in the neck including the muscles, spine, nerves that lead to the face, neck & head as well as vascular structures (Jugular vein & carotid artery)

Sounds miserable, doesn't it?

Well, from experience, it IS! I, unfortunately, happen to have both versions. Classical on the left side and vascular on the right side.

I first began experiencing symptoms in December 2020. I had a muscle knot form on my right shoulder that trapped & squeezed my occipital nerve creating terrible pain that traveled from my shoulder, up the back of my head & neck to my right eye. No matter what position I was in- sitting, standing, laying- I was in terrible pain. I have never felt a pain like this before in my life & it stayed with me for almost 2 weeks. I began to think that I somehow trapped a nerve & decided to go to a chiropractor to find relief.

Little did I know, that decision was going to be the worst & best decision I made. A bittersweet decision that lead to the onset of my symptoms and ultimately lead me to my (unofficial) diagnosis.

When I went to the chiropractor, everything was fine for a few weeks. The initial pain I went in with had gone away and I felt great. Unfortunately, that was short lived. I began to experience even more debilitating pain. I began to get high pressure headaches that made my vision go blurry and would sometimes last for a few days. I had no idea what was going on but I quickly realized that every time I went to the chiropractor and had my neck adjusted I would get those headaches. So, I eventually quit going out of fear of pain & that the chiro had seriously messed something up in my neck.

The neck pain & pressure headaches stayed with me over the past year. Thankfully, the headaches would not happen as often but it was still concerning because I have never been the one to deal with debilitating headaches or migraines. I knew in my heart something was wrong.

Fast forward to August 2021:

I started experiencing heart condition related symptoms. Palpitations, rapid heart beat, chest pain, exhaustion & feeling Breathless from just walking a short distance, etc. I started to clean out my car one day and had to quit shortly after getting started because I couldn't physically continue. I thought I was having a heart attack. So, we got in the car and headed to the hospital.

Since that day in mid August to about mid September, I found myself in and out of the hospital a total of 7 times. Racking up a total of $10,000 in hospital bills. I did not have health insurance at this time as I am a small business owner and could not afford the outrageous health insurance rates. I was also healthy & never thought something like this was going to happen to me.

Every time I went to the hospital, nobody could figure out what was going on. I presented with heart condition issues yet every test proved that my heart was just fine & normal. While that was relieving, it was just as frustrating. I, nor the doctors had any idea what was going on and why I was having these symptoms.

I had to start investigating myself. Clearly, I was getting no answers from the doctors in the ER & by this time, I had gone in so many times they probably labeled me as a hypochondriac with high anxiety. & unfortunately, a lot of Eagle's syndrome sufferers ARE labeled as that because the condition is so rare that not a lot of doctors know about it, making a proper diagnosis hard to get.

I had done so much research based on my symptoms and Eagle's syndrome kept popping up but it was so rare that I dismissed it. Surely, I didn't have a rare condition... or so I thought...

One day a new symptom popped up- I started getting a painful click in my throat every time I swallowed. Not only could I feel it, I could also hear it. Painful & annoying. I never realized just how much I swallowed until it actually became noticeable.

The pain got intolerable & I decided to go back into the ER to have it checked out. The doctor decided to get a CT scan of my head & neck.

What I shoved off as not possible for me (Eagle's syndrome) was now confirmed in the radiologist report. The report read; "partially calcified stylodyoid ligaments"

While I did not get an official diagnosis of eagles syndrome in the ER that night (because the doctor didn't know what eagles syndrome was & said that it was just an "incidental finding and wasn't causing my pain" ) I knew, based on the extensive research I had done, that it was, in fact, Eagle's syndrome.

I cried reading that report. It was a bittersweet moment. I finally knew what was causing my pain & suffering yet I had no idea what I was going to do next... or what I had to do next. How do I fix this? What doctor do I see about this?

With a diagnosis in hand, I went to Facebook to find a support group for Eagle's syndrome. Maybe I could find more answers there....

I'm so incredibly fortunate to have found that group because I finally was able to get a lot of answers from all of the amazing members who also suffer from this condition. I found out that, because Eagle's syndrome is so rare, there are only a few doctors in the US that perform surgery to relieve the symptoms. & it's even harder to find relief from vascular eagles because not a lot of those doctors know about or recognize vascular involvement. Making the possibility of finding relief and solving this issue that much more difficult.

It started to weigh on me & my mental health took a quick nose dive into clinically depressed. On top of being bed ridden (because laying down is the only thing that helps my high pressure headaches & racing heart) I felt doomed to a life of misery & pain.

Fortunately, and with the help of my fellow Eagle's Syndrome community, an ENT in Denver, Colorado was recommended to me that performs eagles syndrome surgery. Not only is he highly knowledgeable in Eagles Syndrome (both classical & vascular) he also works with a team of people (including a vascular surgeon) during surgery to relieve my pain & fully open up my compressed right jugular vein before stitching me back up. Together they have performed many successful eagles syndrome surgeries. This is a complicated & dangerous skull based surgery that I will need not only once but twice!!

I reached out to his office & scheduled a consultation with him to go over my case & CT imaging from the many ER visits I have recently had these past few months.

While it is not easy for me to do this because I have always been such an independent person, there is one thing this whole fiasco has taught me... It has taught me that I cannot always be so independent all the time & sometimes life will knock you on your ass so quickly, the only thing you CAN do is ask for help...

so this is me.. asking for help.

I need help to get better and get my life back!

To be able to simply clean out my car without feeling like I'm going to keel over.

To not live in fear daily that I am going to develop a blood clot & have a stroke.

To be able to make & keep plans with my friends & family and not have them be on the conditions of whether or not I feel well enough to do them.

To not wake up every morning, wondering if this will be my last day...

This condition has stood in the way of everything I love (including my business) and I have become an unhappy, miserable shell of the person I once was just a short year ago.

My appointment in Denver, CO is scheduled for January 27th, 2022.

I have been putting together the costs of travel and I'm quickly realizing that this will be pricey (on top of the $10k in medical bills I have piled up trying to figure out what was wrong with me) my savings has already been drained by this. Overall, things are just very hard for me at the moment.

All donations will go towards travel costs, medical bills & healing!

If you are in a position to donate & decide to- THANK YOU! From the bottom of my broken, humble heart. Thank you SO much! Anything helps & once I achieve relief after surgery, I have you to thank for helping me get there.

If you are unable to donate at this time, please know that I understand and only ask that you share this with others for educational purposes. I only hope that I can advocate and bring awareness to help others who may also be suffering this debilitating condition. Knowledge is power and can truly save a life!

If you've made it this far, you're truly an amazing person & I can't thank you enough for just taking the time to read my story. ❤

My Eagle's Syndrome symptoms:

Classical: 

Vascular:

Neurological: