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Angela's Story

My name is Angela; I’m a 47 year old, single mum of six kids from Victoria.

 

In 2001 I started feeling unwell from pain in my face, ear and throat. Doctors thought that the pain might be associated with my tonsils so I had them removed, but all my symptoms still continued. Knowing this wasn’t right I went back to hospital where they insisted that I must have been suffering anxiety because they couldn't find anything wrong with me. I was sent back and forth between the ENT, the Maxillofacial, and the Neurologist. I started my own research online and came across Eagle syndrome; all my symptoms seemed to fit the profile of this syndrome. I asked for a CT scan to check for Eagle syndrome, after which the Neurologist stated yes to the diagnosis, and the ENT said no. I joined an online support group and got names of three doctors in Australia who could help me. I went to see one of them and was diagnosed with Eagle syndrome, on both sides, 4.5 cm calcified styloids. Currently I'm awaiting surgery to correct it. It has taken between 14 & 15 years to get my diagnosis.

 

Having Eagle syndrome has changed my life completely. All day, every single day, I’m in pain. I also suffer from other varying uncomfortable symptoms. Before I was diagnosed, it was especially hard, because I wasn't given an answer to my condition. I knew it wasn't anxiety, although in saying this, I have developed an anxiety disorder as a result of having Eagle syndrome. I sought out a councillor to help me deal with living with chronic pain; there are days when I feel like I have lost hope. Being a single mum I have raised all of my children while living with Eagle syndrome. I'm restricted in what I can do, and my kids haven't really had a "regular" upbringing, because of my rare disease. Also I have had to leave a job that I loved because I cannot work in constant pain. 

 

I need to have the surgery but I don't know when that will be, because the public health waiting list is so long. I could have the surgery done quite quickly if I was able to pay for it, but in my position I simply can't afford it. I can't comprehend what life is going to be like being free of pain, because I’m just so used to it. My kids are excited that finally, after all this time, almost 15 years; I'll be back to the mum I used to be before I got sick.

 

After the operation I want to retune to all the things I loved doing in life, such as swimming, horse riding and bushwalking - activities I have missed out on because of pain and exhaustion. I also hope to pursue a career in nursing focusing on rare conditions of the head and neck, a dream I have had since before I became unwell. One day, hopefully very soon, I will have a pain free life I can enjoy with my family.