Just diagnosed with ES

I just want to thank everyone for sharing their stories and experiences on here. If it weren't for this site I would have no idea that ES existed. So thank you all!!

I started experiencing symptoms over a year and a half ago. I first noticed something bone like sticking into the left side of my throat along with pain and soreness. I then started experiencing neck and ear pain, constant headaches, night sweats, heart palpitations, feeling of being choked and not being able to sleep on my left side.

In April of 2014, I woke up with the left side of my face extremely swollen. I went to an Urgent Care center and they told me I had an infection of some kind (did not specify what kind). I left feeling very uneasy. I called around to a bunch of different ENT offices and was able to get into see a doctor. He did a scope and saw the "lump" in my throat. He did a CT scan and that came back "normal". He ended up doing a biopsy on the "lump" that also came back normal.

Months went by and symptoms got worse. I started to experience extreme dizziness, issues with vision and concentration. I always felt like I was in a fog. A few weeks ago I was sitting in a meeting at work and became extremely dizzy and lightheaded. My heart was pounding and I could barely breathe. I felt as though I was going to pass out and my coworkers called 911. I had trouble giving my name, phone number and address. All of the tests and labs came back normal. Since that day I have been to an internist, a cardiologist and an endocrinologist. All tests came back normal.

I felt like no one was listening to me or taking me seriously. Dismissing all of my symptoms as a panic attack. I kept researching my symptoms and finally came across this site. I was sure I had to have ES. I called my ENT and brought Eagle Syndrome to his attention, He then examined my CT scan again and confirmed that this is what I have. He is referring me to a Head and Neck Surgeon at Duke in NC.

I am nervous about the next steps and if this surgeon even has experience with ES. Does anyone know of any doctors in the North Carolina area? I keep reading wonderful things about Dr, Cognetti and I am considering contacting his office. Can anyone give me any information on him and their experience with him?

Thank you Aquila! I am happy to finally have a diagnosis. Now I am struggling with finding a surgeon who is familiar with ES in my area. :( I am willing to travel if I need it. Just trying to stay positive.

Aquila said:

That's great news! It's a shame that you had to work so hard to get someone to listen to you. These people should really have known about Eagle's.