This is my story so far. I have had many symptoms over the last couple of years. Occipital & Trigeminal neuralgia, pain & fullness in left ear, above & below ear & under jawline & neck. Migraines including auras and double vision. Tinnitus including pulsatile. These symptoms seem to have started just after I heard a crack/pop just above my left ear.
Seen Neurology under NHS who have diagnosed Migraines but had no answers for the other symptoms. I have been seeing a retired GP who specialises in pain management and mentioned Eagle Syndrome. Obviously searched internet as soon as I could. Very interesting reading! I obtained a copy of my OPG from my NHS denist, which I will try to upload for your opinions.
Over the past few weeks I have also been getting a clicking noise when I swallow including throat pain.
Now waiting to see ENT privately, six week wait (18 months on NHS).
Welcome to our forum, @Rosie! To add to the possible causes of your symptoms, a clicking sound when swallowing can indicate calcified stylohyoid ligament(s) &/or elongation of the greater horn(s) of your hyoid bone. In rare cases there can also be calcification of the thyroid cartilage that’s also involved.
When you see the ENT in 6 weeks, please request a CT scan w/ contrast that shows the area from your hyoid bone to your skull base as that will be the best diagnostic tool to start with.
I’d love to see your OPG imaging. You should be able to upload it now.
Thank you Isaiah_40_31, for some reason it won’t let me upload image to forum. Is this something you can do for me. Would like to see what others think.
I had a CT angiogram with contrast, head & neck to check arteries, nothing remarkable showing according to Neurology, so I will get this reviewed together with OPG at my private ENT appointment in six weeks. I am not sure if the CT can be converted to 3D, this I will check.
The panoramic x-ray certainly shows an elongated styloid process on your left side, you can’t see the right…It would be interesting to see the CT you had if you can get images- sadly many members have been told their CT shows nothing remarkable & they post them on here & the styloids are elongated & really obvious! Unfortunately there is much ignorance (& disbelief!) about ES…
Have any of the medications you’ve tried helped with pain?
Its been an uphill stuggle to get anywhere with professionals. I cannot believe there isn’t more information for GPs etc. I am aware its quite a rare condition, but the symptoms are so debilitating. If it wasn’t for my pain management mentioning it, I still would not have been any wiser.
I am glad my dentist requested an OPG to check on my wisdom teeth, thinking that maybe my cause of pain. Then emailing it to me so that I could compare with OPGs from the internet. Frustrating that I have been through my GP, Dentist, Neurology and Maxillofacial, A&E and 111 and still no diagnosis.
I will update again, once I have seen ENT in 6 weeks.
Sorry also meant to say, have been prescribed Amitriptyline, Codeine, Gabapentin, Pregabalin and Bisoprolol over the last year. Just on Bisoprolol now to calm my nervous system down. Havent had any success with any of the other meds, so decided to come off these, that was not a nice experience! Head is now clearer to go forward.
I’m sorry that the meds weren’t helpful; Amitriptyline has helped with my nerve pain, & I’ve not had side effects, but I know not everyone is so lucky…there are other ones which it might be worth trying?
Hi all, just thought I would give update. So I decided to cancel my private ENT at the Spire Norwich and instead I have just had a virtual initial appointment with Dr Jonathan Hughes on recommendations from this site.
I sent all the info, OPG and CT screen shots over prior to my appointment. Conclusion may well be ES! Dr Hughes is going to request the CT scans direct from NHS to review. I am getting an ear pressure test done locally, then we will take it from there.
First appointment I have had since this all started a year ago where I feel someone was listening and taking in the whole picture. I will keep you posted with any updates.
Hi all, I now have a couple of screen shots from my CT, does anyone think I may have a restriction of Jugular between Styloid and C1. I am just waiting to hear from Mr Hughes once he’s reviewed my CT.
@Rosie - It does look like your IJV is being compressed by C1 or C2 in the images you’ve uploaded. The area of compression seems a little lower than C1 to me that’s why I mentioned C2 as well. Hopefully someone who’s better at identifying structures in these types of images will comment, too.
Your styloid itself doesn’t look to be significantly involved though you may have a bit of calcified ligament above C1 that is slightly pushing on your IJV.
Thank you @Isaiah_40_31 this is much appreciated. The second picture also shows further elongation of the ligament I believe. I started to get my symptoms when I heard a crack in my ear about a year ago. I wonder as my styloid ligament appears so needle like whether I damaged it somehow causing the symptoms I now have.
Mr Hughes doesn’t do a C1 (or C2 process shave) so if it is the case that those processes are causing more compression than the styloid then I don’t know if Mr Hughes would be able to help…but if you’re right & that is a piece of calcified ligament, you could well be right about that , then removing that could be enough to free up the IJV, see what he says…
Thank you @Isaiah_40_31 for uploading my 3d CT image. I think we probably agree, it looks like my external carotid artery is being impinged at the bottom of my styloid. I have checked this image at another angle and my ICA does not appear affected.
I have been in touch with my NHS Neurologist and asked them to check for my left styloid and the radiologist now agrees that this is elongated. I assume therefore that this was missed previously. They are going to make a referral to an ES specialist at Addenbrookes under the NHS which I can only think will be Mr Axon.
I am still in touch privately with Mr Hughes, but waiting to hear from him once my CT has been reviwed.
