Post operative update

Today is day forth post operatively.  I feel remarkably ‘well’, my right ear aches a little and so does my throat.   I also experience pain swallowing.  It feels more like I had a tonsillectomy.  The right side of my face, ear and neck are still numb and sometimes I have to resist not scratching myself when it itches.

The Anaesthetist explained to me that he would be using a different kind of anaesthesia because Dr Sam wanted to monitor the nerves at all times.  (Was this the case with you guys too?) I was wheeled into theatre at 4:30pm (I asked what the time was) and the last thing I remember was how my entire body shook uncontrollably on the theatre bed – I was cold and scared to bits.  The next ‘moment’ I came by, briefly opened my eyes and saw my family and funny enough, the first thing I asked was the time… it was 8:30pm.   It only felt as if I was away for an half an hour!  My throat and neck hurt the most.  I was on oxygen and kept upright throughout the night. 

To make a long story short, I was ‘happy’ to be fully ‘awake’ by 2am.  I asked the nurse if I could use the bathroom.  She took me of my IV and oxygen and helped me into my pj’s - I was surprised to not feel dizzy at all.  I asked if we could lower the bed a teeny bit so I could ‘sleep’ better which she was happy to.

The next morning when Dr Sam made his rounds he said that it took him a good while to get through all the scar tissue.  He said that the styloid wasn’t that elongated but the ligament was quite thickened and he removed all.  He said that would have explained all my symptoms as there was a lot of pressure there.

He looked at my drain and said that may be removed too because there was little to none fluid oozing from the wound.  He discharged me. 

This was so remarkable because no one could have prepared me to be discharged just short of 24 hours after surgery.  Praise God! I am now recovering at home.  No, I am not even thinking about having the left side done right now. I just want to recover completely first.

One more thing: Dr Sam and his team were great! I have so much respect for him.  He made time to talk to me before I went into theatre; he explained once again what he will be doing and put me totally at ease.  

Surgery brought forward to October 4th

About two weeks ago I received a call from Dr Sam's rooms.  He was going to be away in conference so they wanted to bring the surgery forward.  Of course I had no objections!  With the ear ache becoming so intense there was no way I was going to put it off for another month or so.  First I was terrified but then if I am quite honest with myself I shouldn't think about it - I should cross the bridge when I get to it, so to speak.

That is what I am going to do besides preparing myself mentally and spiritually.  I will update here as soon as I am able to.

Surgery scheduled!

I feel relieved and terrified at the same time…. I am sure it sounds familiar! My surgery is scheduled for October 18^th!

Just a quick recap:  I saw Dr Sam last Wednesday who sent me for yet another CT Brain + Sinus scan.  He wanted to rule out more issues and also wanted to read Dr Neil’s last report and recommendations, after he had seen the MRI and Bone scan.  Luckily I had an appointment with Dr Neil later on that same day.  I do have a degenerated disc in C5/C6 and said that he would give my cortisone injections for pain relief.  That alone scared the living daylights out of me and my response to this was that I will have to think about that.  I would really want my styloid ligaments removed first….  Dr Neil agreed that my current symptoms are more related to Eagles so he went ahead and dictated the letter to Dr Sam.  I like the way some of these specialists operates! They are so ‘transparent’ in their approach which I think gives one more confidence and respect in them.

So today was my follow up, after the Brain + Sinus scan.  Dr Sam was happy to offer me to have the surgery but like all surgical procedures there are no guarantees which I totally understand.  No one wants to over promise and under deliver ever.  I am open minded as well and said there will be many people praying for both of us!

I am terrified, yes… I don’t like to be anaesthetized at all.  It just scares me.  So my fellow friends just remember when you think of me you have to think Queensland time! Remember we live in the  the ‘future’ lol!

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!