Hi everyone, I’m grateful to have found this forum. After waiting for over a month to gain insurance approval for a CT scan with contrast, I paid out of pocket to get it done. The results from the radiologist do state “elongated styloid consistent with existing Eagle Syndrome” plus “cervical spondylitis” and a nodule on the right thyroid not needing further research. I feel so glad to figure out my issues. I’ve had so many problems related to ES and now the puzzle pieces are fitting. But, I’m in fear of doing normal activities and also have a pinched nerve. Thank you all for sharing your journeys.
You can’t really be pleased to have an ES diagnosis, but we all get relief to know that we’re not mad & there is an explanation for our crazy symptoms! To get confirmation is a real relief!
Have you looked at the doctors list to see if there’s anyone near you that you can get referred to? That’s the next step, if you feel that you want to have surgery. And I guess getting the thyroid nodule checked out- obviously we can’t help you with that, but there have been quite a few members who have had that as well- you could search for that in the discussions?
Hope you get somewhere soon, let us know how you get on!
Not pleased but really happy to know I’m not going nuts. My neck/Jaw/Face etc has been an issue for a long time. I haven’t looked at the list yet. My marketplace insurance isn’t the best so I’m limited. I did find an ENT in the area and made an appointment a few weeks ago. Timothy Thomason is his name. I’m not fond of surgery. Kind of want to take a more natural approach (if possible). Thank you Jules!
Unfortunately, the only “cure” for ES is surgery because elongated styloids &/or calcified stylohyoid ligaments irritate some of the cranial nerves which pass through that area of the neck. Irritated cranial nerves are largely responsible for ES symptoms. Additionally the styloids can impinge the jugular veins & internal carotid arteries causing other severe symptoms (which it doesn’t sound like you have). Calcified stylohyoid ligaments “tether” the hyoid bone so it can’t move as it needs to when you swallow, speak, breathe, etc. Removing the styloids &/or calcified ligaments takes the pressure off of the nerves & vascular tissues thus allowing them to heal.
Some people have gotten nerve pain relief by taking nerve pain medications such as Gabapentin or Amitriptyline. You can use the magnifying glass above to search discussions about nerve pain medications on this forum. Others have had some pain relief by getting ultrasound guided injections of lidocaine combined w/ cortisone in the area of the neck where the styloids are. There is a limited number of these shots a doctor will give & their effectiveness varies from a few hours to several weeks - depends on the patient’s response to the medications. Unfortunately, both the pain meds & the shots are “band-aids” for symptoms. Removing the source of the problem is the best treatment.
There are a number of forum members from your state who’ve had ES in the past couple of years and though there are doctors on our list from your neck of the woods, none were receptive to doing ES surgery for those members. Several of these people traveled out of state to see doctors who would help them.
I hope your experience w/ Dr. Thomason will be a positive one. Please post & let us know what you learn from him & about his willingness (or unwillingness) to help you with ES.
Thanks for so much information! I do currently take the medications you referred to. I am about to see Dr. Thomason right now. I’ll let you know how things go. I’ve bern scared and frustrated by this experience. Hopeful for a safe solution.
Thinking of you & hope it goes well…