My Eagle Syndrome journey

eagle

My name is Angie & I’m 47 years of age, & a single mum of 6 kids, of which 3 live at home & 3 live independently.

I was diagnosed with Eagle Syndrome in August 2015 after 14/ 15 years of suffering with it.

I had seen many Drs at Royal Melb Hosp, in ENT, Maxilofacial,& Nuerology who failed to diagnose me, told me that they don’t know what’s wrong with me and that it’s probably anxiety.

I had suspected I had eagle syndrome for many years, as i’d googled my symptoms & researched conditions of the head/neck. My symptoms all pointed Eagle Syndrome. I told doctors that I’m convinced that I have eagle Syndrome, but they told me that they don’t believe I have it.Earlier in 2015, I tried to get in to see a doctor in ENT again as I found my symptoms & pain to be getting worse, but they sent me a letter explaining that they can’t see me right now, but if something comes up in the future they’ll try to fit me in.

I was desperate for help as I wasn’t coping very well at all , so I joined an online support group for people with/or suspect they have eagle syndrome. I made friends with a lady on the site & told her my story ( including that I had a ct scan years before that showed a 3.5 right side calcified styloid) & she told me that I HAVE eagle syndrome. She gave me the names of 3 doctors in Australia who may be able to help me. Luckily one of them was in Victoria so i made an appointment to see him.

I saw him about 3 weeks later & he scoped me ( light with camera up my nose & down my throat), we went through my symptoms & he pretty much diagnosed me on the spot, but he did need a ct scan and an OPG jaw xray to confirm.

I went home and got these 2 things done, went back to see him 2 weeks later and he explained that I have eagle syndrome on both sides of my throat, that my styloids are both 4.5 cms & calcified.

I cried all the way home on the train. It was a mixture of relief that I knew what is wrong with me and also disappointment because of all those years I’d been misdiagnosed. I rang my kids, my parents and brother, crying my eyes out. It was so overwhelming.

There is surgery to correct my condition, which is called a styloidectomy (remove al of the calcified, elongated styloid ligament). I can have the surgery but being a single parent on a disability pension (because I’m in pain 24/7 ) I don’t have private health cover and the waiting list for this surgery is somewhere between 2 to 3 years.

I could have it done privately if I had the money to pay for it which I don’t and the cost is somewhere between $4,000 & $5,000.

I’ve had to put my life on hold for the past 14 to 15 years because of the constant throat/ear,facial,oral,migraine/& neck pain due to my eagle syndrome. I had to leave my job that I loved so much ( at an animal shelter) because I couldn’t work & keep up with my family & home commitments & deal with pain all at the same time. It was literally doing my head in.

I’d get home from work totally exhausted from constant pain, & the anxiety that goes with pain. I ended up developing an anxiety disorder because I was living in constant pain  and  because I didn’t have a diagnosis. There were times when I considered throwing in the towel. I could be strong for a while, but i just couldn’t be strong ALL the time.

Everyday was a struggle. Physically, emotionally and mentally. I taught myself that any other problems were just small problems, otherwise I  wouldn’t have been able to cope , but in saying that, having chronic pain, every single second of every single day and not knowing what was causing it made trivial things seem very small.

There were many times that i questioned my own sanity, because I kept getting told the same thing – “we don’t know what’s wrong with you, it’s quite probable that it’s anxiety.” I’d be on the train heading home, thinking “Am I mad & I don’t know it? Is this pain all in my head?”

This whole experience has taught me so much about life. It’s shown me who my real friends are, to believe in myself, & to trust my own choices & decisions. And that I know myself & my body. In saying this, we all know our own body. So if you feel something’s not quite right with your body, if you have pain and/or symptoms that continue and no one can help you, DON’T GIVE UP!

Stay strong, & don’t loose faith. For when you loose your faith & hope, you loose everything. You loose yourself. Trust yourself !

My youngest child Charlotte, & my only girl was 2 when i got sick. She’s now 16. Charlotte’s never known me any different than what I am now with Eagle syndrome. She’s never known me not to be in pain. For almost her whole life I’ve had this condition. The only thing that’s different to her about me now is that I have a diagnosis. My pain condition has a name. I used to call it “my pain condition”, now it’s my Eagle Syndrome.

I have a very close friend, Donna. She lives in the same town as i do and we’ve been there for each other through many tough times. Donna never doubted me, or ever thought that the pain was “in my head. She believed me and believed IN me, from the time this all began until now. I don’t know where i’d have been if it weren’t for Donna.

I tell her now that “I owe her”! she says “you owe me nuthn!”