One step forward, two steps back ...

I know I ended up on a ‘happy’ note but that was really short lived. Let me tell you about it.  I’ll start where I found Dr Sam, an Otolaryngologist who practises locally.

He is a lovely bloke, very open minded and caring.  I was under the impression he wanted to ensure a proper diagnosis.  He had a look at the OPG X-ray, examined my throat and ears and asked me which side, according to me, was the worst.  He briefly explained how the surgery is performed and what the down time would be. Because I also have had cervical spine surgery in 2003 he said that he would want to broaden the investigation.   He sent me for a contrast CT scan.

I got to get the results before my next appointment. I was quite upset by what I saw.  Apart from small changes in my spine and small nodules/cysts on my thyroid gland (which are quite normal in people of my age) there was no abnormal calcification of stylo hyoid ligaments.  Now remember I was initially diagnosed by the humble OPG X-Ray: “Ossified styloid hyoid ligaments are noted bilaterally (Eagle Syndrome)”  I noted the different spelling too.

I just couldn’t figure out why this was the case.  How could one radiologist report calcified stylo hyoid ligaments and the other clearly stated there aren’t any? Eagle Syndrome fits with all my symptoms.  It just sent me on an emotional roller coaster. All of a sudden I could not bear the physical pain I was in I had one pity party after another. The crying helped. Seriously, it did. I got rid of a lot of frustration.

I received a call from Dr Sam’s rooms confirming what I already know. I just broke down, took the rest of the day off work and drove straight to his rooms.  Thinking he was there of course.  He wasn’t – he was in theatre. The receptionist had empathy with me and made me another appointment closer to the one I already had.

To make a long story short long Dr Sam said that he wanted me to see Dr Neil an Orthopaedic Surgeon as there are some changes in my cervical spine.  Yes I agree, but in my humble opinion, they are insignificant. I recon for my age also bearing in mind the surgery I had; it was still in pretty good shape.  Dr Sam said that it might be a while before I get to see Dr Neil and will therefore take my CT scan to a Dr Sandy, for a second review.   He will see me for a review when we have both reports – those from Dr Neil as well.

Little did he know what a lucky Girl I am.  I got to see Dr Neil the very next week.  As expected he sent me for an MRI and Bone Scan.  Well, I have had the results and as expected in my opinion they are pretty insignificant.  I see both doctors on the same day – Dr Sam at 9am and Dr Neil at 3pm on Wednesday September 4^th. 

Well, now that I have updated my blog I feel a little lighter!  I know there are some time delays in between but for good reason.  I have been down and out with a terrible flu which ended up in bronchitis.  I am much better thank you. I also managed to wean myself off all pain meds.  I just feel my body will benefit from it. Thankfully my pain threshold is pretty high.  I try to focus on what I should be grateful for and keep busy with the little things I love to do.  During one of my ‘bad’ days I stumbled across this beautiful story.  I was deeply touched and my ‘misery’ suddenly seemed to disappear… Make sure you watch the follow up as well.

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!