After chasing answers, I finally have a clear diagnosis of my throat pain — a Cone Beam CT confirmed that I have Hyoid Bone Syndrome. It was initially thought to be Eagle Syndrome by my ENT (!), but thanks to the incredible help of @TML and @Isaiah_40_31 and a subsequent detailed radiology report, it’s been correctly identified.
The challenge now is finding the right specialist. Unfortunately, the private ENT I saw admitted this isn’t really in his wheelhouse and simply gave me a list of names without much guidance.
I’d be really grateful if anyone here could share recommendations for ENT consultants (or other specialists) in the UK who have experience in diagnosing or treating Hyoid Bone Syndrome.
I’m sorry, but the only surgeon as far as we know who is willing to do hyoid bone surgery is Mr Jonathan Hughes in London, & he seems to have been hit and miss with who he’ll treat for ES recently, so I don’t know about hyoid bone surgery, & it’s not a recommendation as such!
I hope that either he or one of the surgeons on the list that your ENT gave you can help
How did you get the HBS diagnosis? I’m also wondering which one I’ve got. Before I found this forum I thought I might have HBS because my symptoms aligned with that a bit more.
PS, I’m also in the UK, I went to see Dr Hughes and he didn’t really diagnose me as such but said that I had discontinuous calcification on both ligaments and my styloid processes are 3.2mm and 3.5mm.
I had a cone beam CT scan of my neck which picked it up, I have a constant sensation like a bone sticking into my throat and then a sharp scratch with every swallow, wonder if your symptoms are similar?
When mine first started in October 2021, I had a dull pain constantly in my neck and burning pain in the back of my neck. It was worse whenever I sat on soft seats like the sofa and when I googled it, someone else had been diagnosed with HBS and had the same thing. My hyoid bone feels a bit too mobile and clicks when I swallow and sometimes clicks when I turn my head from side to side. I get all sorts of sensations, pain, pins and needles, burning, loss of feeling, and I get chest pain which can be HBS as well.
I saw my local ENT a few weeks ago for a second opinion (I’m in Essex) and he was useless, just said that I’d obviously been googling and I should just put up with it all because I can still eat and hadn’t lost weight because of it.
I’m planning to go back to Mr Hughes at some point and I’m waiting for an appointment with NHS speech and language therapy.
I hope you find a definitive diagnosis, it is frustrating the huge variation in quality of ENT docs, I had seen 5 before getting a diagnosis so keep on trying.
I spent a long time today going through old posts on the site, seen in previous threads these clinicians offering online consults for second opinions which you might find helpful:
For anyone coming to this thread about the physio options I came across these folks in previous posts:
Thank you for taking the time to read through old posts & find these links, @omsie10. I thought I’d read all the posts on this forum over the years but hadn’t seen (or don’t remember) the one about Ben Fedrik Injury Therapy.
