Saturday, August 3, 2013

Eagle's Syndrome: Most misdiagnosed condition?

I know it has been a while but it's never too late to start blogging again...

 Normally I blog about the places we visit.  I will share a little later about the couple of days we spent in Cairns, in northern Queensland. It was on this two hour flight to Cairns 'it' all started. Coincidence?

Upon take off I had sharp shooting pains in both my ears which continued throughout the flight up until we set foot on the ground.  Although still a little sore the excitement of the upcoming events made me” forget” all about it quickly. This would have been our second visit to the Great Barrier Reef and we also wanted to explore the surroundings/attractions.  I think we bought some ear drops and nasal spray.  The pain was still there and would come and go in stages.  Our flight back was no different.  I was in agony.

Back home I bought more ear drops. The pain continued for a couple of weeks so I went to see my GP. She assured me that there was nothing wrong with my ears.  Because I could always handle pain fairly well I just continued living my life.  At one point it became unbearable again and I sought another GP's opinion.  This time this doctor said to me and I quote: "I swear to God, there is nothing wrong with your ears” He gave me a referral for a mammogram as a normal procedure for a woman of my age.  A couple of weeks later the ear ache became unbearable yet again.  I was at work and got an urgent referral to an ENT Specialist.  He looked into my ears and said my ears were so healthy and clean that one 'could eat from it'... then diagnosed me with TMJ disorder, sent me off for a hearing test and told me to come back to review the results.
The latter was that my hearing was above average.  I was then told to exercise my jaw, to live with the pain and tinnitus.

Little did I know that what I had could sometime make you clench your jaw as well - and needless to say by this time grinded my teeth to bits.   For the next couple of months I had physio therapy, had an occlusional splint made by my dentist and even tried costly Botox injections in my jaw.   I desperately needed something for the chronic pain.

My symptoms included: earache, tinnitus, upper neck pain, just below the occipital bone and could ‘hear’ every swishing sound inside my neck when turning it.  Being the person that I am I accepted a life filled with this debilitating condition, which I believed to be TMJ disorder.

As time went by, I had my up's and down's.  I tried to be the bubbly person that I am and focus on my job and family life.  At times the pain just forced me into reality.  One 'down' day I just thought I had enough; I just had to do something because life was just not worth it living in pain.  I thought I should get my grinded teeth fixed; this will then correct my TMJ disorder and ultimately solve my pain and discomfort.  To do this in Australia was way too expensive and I just couldn't afford the A$21000 bill.  To get an assessment done overseas  (and save thousands!) I had to have an OPG X-Ray.  When I got the results back I was stunned!  There was "ossified styloid ligaments noted bilaterally - Eagle Syndrome.

I was amazed when I started my research on the internet and everything fell in place like a perfect puzzle.  I am now on my journey to healing.  I will give updates as I progress.  The message here is: if you are suffering from these symptoms, don't give up!  

** Most of the ENT Specialists I contacted did either not know of Eagle Syndrome or simply said they can't help.  There needs to be a better awareness of this terrible condition so fewer people get misdiagnosed and suffer unnecessary.  

I found a surgeon in the next blog post!


  1. Please email me. Just diagnosed in WA after 20 years of pain. Only 33. Not good at tech.

  2. It’s good to hear that everything fell into place, and that your condition has already been identified. The little info we currently have about Eagle Syndrome makes it quite difficult for the doctors to distinguish it, which often leads them to rule it out. Anyway, here's to being on your way to a timely recovery. Cheers!

    Sabrina Craig @ Medical Attorney

  3. Been there! So incredibly frustrating to find out that one has spent so many years of their life just "dealing with the pain" because all the docs said you there was nothing wrong!

  4. Just had surgery 2 weeks & 3 days ago. Feeling fantastic! Went undiagnosed for 15 years, till i diagnosed myself, found online support group, & they gave me the name of a surgeon in Geelong Vic. I was in the public health system for over 13 years, & they said they dont know whats wrong with me, & to see a psyche. Anyways, im well now, & recovery went so smoothly. I feel so blessed to have finally got my life back, after 15 years in Hell. cheers, Angie Barclay

    1. Hi Angie - can I ask who your surgeon was? Did they do the operation externally or internally? Like all of the others here I have been very frustrated. 2 failed surgeries due to an arrogant surgeon.