Hi everyone and thank you,
I have had several months of symptoms. First of all I noticed some swelling under my ear and posterior to my jaw which was painless for a few months, then I ended up presenting to hospital which a swollen right side of my face and notable hard palpable area under my jaw. ENT firstly thought I had salivary stones and I was sent away with Antibiotics and planned ultra -sound. First ultra sound was not convulsive for stones however noted a small cystic area on my parotid gland of 5mm. I was referred to head and neck consultant who initially thought I had submandibular stones. He has since changed this initial diagnosis as second ultra sound showed extensive calcification to my stylohyloid ligament and he even called it ‘eagles’ he did not push for surgery and has ordered a CT neck to confirm. He also thinks there may have been some rupture of the ligament which caused the facial swelling!
My questions for you guys ( the expert patients)
Can you feel your calcified ligament? Mine is hard under my skin and clicks and crunchies on palpation. horrible
Do you guys have neck pain, shoulder pain, orbital pain, ear pressure and base of skull pressure ? All of this is currently annoying and not 10/10 pain…just really irritating …sometime I have sensation of something in my throat
The only relief I seem to get is with anti inflammatory drugs.
Interestingly I have had a 15 year history of balance issues diagnosed as migraine associated vertigo and have taken amitriptylene for 10 year plus with good effect. I get some issue when turning my head quickly. None of this has stopped me leading a normal life
Any help and advice would be greatly appreciated…I’m starting to wonder if i have had problems with this for longer than I realize
Take Care x
I got diagnosed after a suspected salivary gland too, & have taken amitriptyline for a few years as well, but just had elongated styloid processes, not calcified ligaments. I was able to live with it for a couple of years, but then had a disc problem too, which I think possibly altered the position of the structures in the neck, & so I began to get vascular symptoms- that prompted me to have surgery.
All the other symptoms you describe could all be ES symptoms- members have had them all. The weird thing about ES is that you can get different symptoms for no apparent reason, & they do seem to come & go with some people! I think that when a lot of people read up more about ES, they realise that it’s quite likely they’ve had some symptoms for years without realising!
If it’s possible, as you say you’re having a CT, I would ask if you could have one with contrast, as this will show if there’s any compression of blood vessels- although not always if it’s a positional thing, like you mention having issues when you turn your head. But while you’re having a CT done, then it might be worth trying to see if they’ll do contrast as well.
As for the way forward, that’s tricky. Some people decide they don’t want the risk of surgery, that they can live with the symptoms. Others find their quality of life affected so badly that they have to have surgery. If you’re finding anti-inflammatory medication helps, it might be worth considering having lignocaine & steroid injections into the region, which can help for a longer time, although results are mixed with that, & having it done while guided by a scan seems to work better.
If you do consider having surgery, then I would take time to find someone experienced in ES surgery, as having them just shortened or snapped off could make things worse. We have a list of doctors familiar with ES in the Doctors Info section; I think that there’s only one doctor on our list in Scotland. Mr Axon at Cambridge in England is very experienced, but obviously a long way for you to travel, & I don’t know if NHS treatment is transferrable from Scotland to England? Otherwise any skull base surgeon/ otolaryngologist would be a good bet to get referred to- I’m sure that there would be one of those surgeons in Edinburgh or Glasgow?
Good luck, let us know how your CT scan goes!
I also have calcified ligaments and I can feel them and yes, they make weird little noises. Though I try not to poke and prod at them because it makes my neck ache when I do. Odd that there would be a “rupture” - seems like something you would have known about/felt happening. Most of us experience your same symptoms - plus some, minus some. As Jules said, as you go through this enlightenment you may begin to realize that you have experienced a number of things that are caused by ES and just didn’t put it together. I wish good things for you in your journey for a cure.