I am quite new to the site, and so glad I found it. I'm 26, female, and I am currently trying to get a diagnosis of Eagle Syndrome confirmed or ruled out properly by my ENT. I've experienced the following symptoms over the last 4 and a half years, it started with a clicking/grinding sensation when depressing my tongue/swallowing/moving my head in certain directions/opening my mouth too wide (this 'clicking' is more than a feeling than a sound I hear I'm just not very good at explaining it! my husband has even felt it when he's put his fingers on my throat and I've swallowed, from researching I think it is around the hyoid bone area?), it's gradually gotten worse and worse and I now have near constant headaches that feel like they start in my throat, ear pain, pain under my tongue/submandibular gland area, my vision in my right eye often becomes blurred, I have a sore throat more often than not and jaw and facial pain that feels like it is slowly spreading up the right side of my face. I also have neck ache which travels down my shoulder blade, it all makes me miserable. All my symptoms are on the right side (although lately I keep getting 'twinges' of the same kind of pain in my left ear) and have worsened significantly over the last 6-7 months and forced me to go back to an ENT for about the 5th time since this all began. Everyone I have seen before has had no clue, shrugged their shoulders and basically told me it is all in my head, which (especially after finding this site!) I'm convinced it absolutely is not! I've had 3 ultrasounds on my thyroid and lymph nodes in my neck, a barium swallow about 3 years ago which showed up nothing. My lymph nodes do seem to go up and down, was wondering if anyone else has experienced problems with this with Eagle Syndrome?
My question is, how did you get diagnosed? My ENT recently did a biopsy on what he called 'excessive lymph tissue' in my throat which came back clear, and he said before he did it he was doing it more to put my mind at rest than because he actually believed something was wrong. When I went to the appointment to get the results I was armed with a list of symptoms and info I had found about Eagle Syndrome and he is thankfully taking me quite seriously, he didn't call it Eagle Syndrome but he did talk about calcified styloids. He sent me off for an X-Ray to look at my styloids that same day, but I haven't got the results yet. He's also ordered an MRI on my submandibular salivary glands as there is a slight swelling there and it is painful - although he doesn't seem to think it is too abnormal. Would an X-Ray and MRI be enough to show up elongated styloids, if that is indeed the problem? A few things I have read seem to suggest you need a 3D CT scan to see them properly?
X-rays can show the styloids, if the angle is right- I had a panoramic one done which goes all round the jaw, and it showed them well. Others have been diagnosed with ordinary x-rays I think; if it's been requested to look for elongated styloids then hopefully the radiographer will have got them right! MRI's don't always show the styloids that well but again some people have had theirs diagnosed from MRI. An ordinary CT will show the styloids too; a 3D CT can show if there's any vascular involvement. It's good that the ENT took you seriously!
I had trouble with salivary glands too- the submandibular one the worst side was swollen and painful. I get a lot of pain and numbness in my jaw and cheek too- I think it's the Trigeminal nerve possibly been compressed. Hope that the X-rays show something to help you with a diagnosis.
People have been diagnosed with x-rays, CT scans, CT scans with contrast, and 3D CT scans. I know of one person who was diagnosed with an MRI, but that's very unusual. Usually we are told the styloids don't show up on an MRI. There have been several people on the forum whose x-rays gave very clear pictures of their styloids.
I think the 3D CT scan is kind of the gold standard, but it's not necessary for diagnosis. I always thought you usually needed a CT scan with contrast, but when I went to two of the well-know eagles doctors, they said all I needed was a regular CT scan.
I ended up getting a CT scan with contrast for my diagnosis. For some reason, my dental x-rays didn't show any problem, so x-rays didn't work for my diagnosis. Our cases are all so different in many ways that it's hard to say for sure what you need, but I think a safe option is a CT scan with contrast.
Thanks guys. I still haven't had the results from my X-Ray or an appointment through for the MRI for my salivary glands and it was two weeks ago today. If there is no clear conclusion with the X-Ray I will request a contrast CT. Have any of you had problems or heard of problems with lymph nodes linked to Eagle Syndrome?
I was diagnosed when I went to the ER for vertigo and they did a CT Scan with contract, and the Radiologist diagnosed me with Eagle Syndrome. This scan is what my ENT doctor reviewed prior to surgery (bilateral styloidectomy) and he was able to see styloid as well as location of carotid arteries.
I posted photos of my CT scan (w/o contrast). Click on the photos button at the top of the page (my photos are on page 2), and you'll see pix of elongated styloids as well as incisions from some of the members who've had external surgeries. These will help you to better understand what you're looking for and what to expect moving forward.
Your symptoms definitely sound like ES and have been documented by many people on this site. This is a strange ailment which definitely produces odd symptoms.
I hope you're able to get a proper diagnosis ASAP!