Attended my long awaited referral back to ENT today - 1st saw same consultant 2years ago and various diagnosis since from other specialists but not ES. However today consultant smiled when I went in & said I have diagnosed 2 cases of ES in the past 2 months (my GP had forwarded a letter I had sent to him suggesting I might have it). Have now been referred for 3DCT scan. Feeling relieved to have struck Lucky & found ENT who is ES aware. He also advised me that at some time in childhood I have squashed my nose, before I was 10 yrs, but I don’t remember anything but thinking this could been a trauma to head that caused ES. I’m kinda worried now that I don’t have it & have to start from scratch again to find out what is causing this pain. Sorry this is going on a bit but thought would also let everyone know that since chiropractor has realigned my C2 vertebrae my symptoms seemed to have switched sides. Still experience pain on right but now worse on left.
Glad to hear that you've found a doctor who's aware of ES, and hope that the scan shows clearly what's wrong! Hope you don't have to wait too long for it and the results- keep us informed!
Will do, thank you
Out of interest, who was your ENT, and which hospital? Like you said on your home page, there's so little awareness of ES in the UK...
It's interesting your neck pain has switched sides! A lot of people have elongated styloids both sides, but pain on only one, and quite often following surgery one side, the other side begins to play up! It could be that by re-aligning your C2, the tissues have all been altered around that area, and been pushed closer to the styloid the other side? I have bilateral elongated styloids, but originally pain only one side. The other side is now gradually getting worse.
Finding someone who can diagnose you is half the battle. You can then feel understood and relieved. I wish you luck! Then, all you can do is seek proper treatment (tx). Keep us posted! I'm having my 2nd ES surgury in 2 weeks!