I work as a Senior Radiographer in the UK - if I didn’t, I would have given up on myself almost before I started.
I am very fortunate to have been offered surgery on my RT. Styloid with extensive calcification .
This would not have happened but for my job.
I am 63yrs old and have had various “neck up” symptoms for untold years, some irritating, some disturbing, all degrading my quality of life.
In 2014 I had a Pacemaker inserted for AV node block ?? necessary ??? caused by ES, I will never know. About 3 months later I suffered a minor TIA but a 100% diagnosis was not possible as my PM excluded me from MRI examination, a Consultant later corrected me sternly saying “excuse me presumed TIA” strange that I had been put on Atorvastatin and Clopidogrel on his direction. I had, however, submitted to CT Carotid Angiography where although my calcification was not reported on "Substantial calcification encompassing the Rt. Internal Carotid " which made assessment of narrowing “difficult to assess but presumed greater than 50%”. Doppler US did not confirm this.
On a separate occasion, back at work, I asked a respected ENT Consultant Radiologist to review my detailed CT for evidence of physical cause for my tinnitus, his exclamation of “ohh look your Stylohyoid ligaments are almost completely calcified” LITERALLY rings in my ears today ( pun probably intended !)
So in essence the discovery was commented on as an incidental finding of no clinical relevance. It was some time before I realised Mr Google might be useful, as nobody else was interested. Putting together long term symptoms I suddenly had Stylohyoid calcification being thrown at me from all directions and I thought “hang on I’ve got that” I do not have the luck to win the Lottery but do have enough bad luck to acquire a rare syndrome i.e. Eagles ! I now feel the rarity could be more out of ignorance and disinterest, you’re not going to become the next Christian Barnard making great advances in treatments for ES.
I am soon to receive the surgery at the hands of my, hopefully, Saviour, an ENT surgeon who, yet again, I could only resource through my work , and to think, in my youth, I nearly joined the Navy !
I returned to my GP surgery to see the same shoulder shrugging variety of GPs that, haven’t heard of it, don’t care about it, do you not think there is some hypochondria in this and methinks you Googleth too much. My tack this time was to approach on a basis of it not being ES but did I not Merit a referral to an ENT surgeon, of my choice, to investigate my numerous disabling symptoms.
So here I am now, hoping desperately that I will benefit from the Pros and avoid the Cons of Surgery. Watch this space !!
Would also like to express my good wishes to, presumably, many here who have had a longer and more arduous time gaining any support in their suffering, but I may equally be underselling my case as I did have my tonsils removed as a child and did experience a dramatic change in metabolism aged 19 when profuse sweating came into my life as an unwelcome guest as it is now, My GP then felt as a young men “I needed my leg over” very professional. My thought now is ??? cause and effect !
Good luck everyone