Maybe ES, what do I ask my doctor for next steps?

I’ve been dealing with chronic neck pain and various symptoms for years. My symptoms that I’ve dealt with for years have been:

  • chronic bad neck pain
  • should/upper back pain
  • migraines and head tension
  • tinnitus
  • regular sore throats that aren’t caused by illness but usually resolve quickly (like I talk for 30 minutes and have a sore throat for the rest of the day)

I went to a lot of doctors to try and resolve my issues including orthopedic surgeons, physical therapists, ENTs, etc but never got any help and for the most part the pain was annoying but manageable. But about 6-7 months ago my pain and migraines reached a new level that has been unbearable. Daily migraines, extreme fatigue, no appetite, general feeling of un-wellness, and the list could go on. I was diagnosed with mono but it just would not let up. I went to a chiropractor and he told me that my C1 vertebra was out of alignment and his stuff helped more than anything but I’ve still been in chronic pain for months now. I felt like a month ago my mono symptoms were starting to ease up and I was getting some relief but then they all came back recently just without the feeling of un-wellness. I had migraines every day last week. My life feels like a living hell right now and I’m at my wits end.

I would have never suspected eagles until I remembered when I first saw my chiropractor back in November that he had pointed out in my xray that it looked like I had some calcified styloid ligaments. He said that it is pretty uncommon but that he actually sees it a lot more often then you would expect to see it in the general population. (I don’t think he’s ever told anyone to look into eagle’s syndrome because a lot of his patients get relief from his treatments and because he’s not really familiar with it, it’s just a pattern he’s noticed in his patient’s x rays who go seeking treatment for the same sort of symptoms.)

I went to my chiropractor on Monday and asked him if I could see the x-rays he had on file. He had x-rays from a few angles and to be honest they didn’t look like much to me because I’m not a radiologist but the ligaments or bones that he says look unusual you can see on multiple x-rays although he wasn’t sure if there were ligaments or bones because they look really skinny (I’m a very petite person). I took a picture of one of the x-rays so I could show my Dr although I really wish I had taken pictures of all the x-rays he had because I really don’t know if the single x-ray picture I took is super convincing (it’s an open mouth one).

I’m not necessarily convinced I have eagles and I don’t want to get my hopes up but it would explain my symptoms I’ve been dealing with for years and my chiropractor seems to think there is some calcification on my x-rays. So what would be my next steps for trying to get a diagnosis? I’m in Utah so I think there are limited doctors with experience in this so do I:

  1. Ask my doctor to send me to an imaging lab to do a CT scan where they specifically measure my styloid bones and look for calcification? Or do I
  2. Ask my doctor to send me to an ENT who would then perform a CT scan and look into making a diagnosis

I’ll be honest I’m a little distrustful of ENTs because both times I went to an ENT to look into my various symptoms I felt like they were very dismissive and treated me like I was faking my symptoms because they didn’t find anything.

A CT is definitely the way to go for a diagnosis, although it can be done through a panoramic x-ray too…if your doctor can send you for a CT without an ENT appt that might save a bit of time, otherwise you could ask to be referred to an ENT with ES experience, although the only one we know of did hyoid bone surgery on a member, Dr Marshall Smith, Salt Lake City. If you do go for a CT, ask for it to cover the head & neck down to the hyoid bone, and for it to be evaluated for ES, i.e. to look for the length, angle and width of the styloid processes and to check for calcification on the stylo-hyoid ligaments. (It’s not always possible to tell whether the styloids are elongated of if the ligaments are calcified, it can sometimes just calcify into one long spike). Also try to get copies if you can.
It might be worth you trying to get a CT with contrast done as vascular ES can cause migraines and tinnitus, and feeling ill…
It’s totally understandable that you’re not keen on being referred to an ENT, many members have been dismissed or put through unnecessary tests…I hope that you can get some answers!
If you’re able to put an image of the x-ray you have on here we could always have a look- we’re not doctors but have seen alot of styloids!

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