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…
Wow, It’s amazing how quickly time flies. I did see Dr. Thomason and although he helped by prescribing nasal sprays, I have not returned. During the visit, he treated me as if he thought I was crazy. He even said to his assistant “this is my new patient who thinks she has ES” blah blah blah. I did explain that the CT and the detailed dental scans both showed the elongated styloids on both sides. I had been doing a bit better I thought but now I’m having trouble with my eyes. Primarily the left eye which is staying blood shot no matter what I do. I thought it might be a symptom of covid 19 and have tried various eye drops. “Lo and behold”, tonight I logged into the forum and researched bloodshot eyes and it’s another symptom of ES. I’m still on the marketplace insurance plan but need to find an EDS doctor to test me for that plus a doctor that will treat me correctly with regards to ES. I’m in DFW, TX. Now with the pandemic and everything else, I’ve become a hermit. With the exception of seeing a few family members occasionally and masked at a distance. This whole thing is upsetting. PLUS, I need to make sure my 12 year old son stays well and gets checked for ES as he gets older.
So sorry that you’re not able to see a different doctor well versed in ES. I hope that it’s not too long- I’m UK, so don’t know much about the US system, maybe others might have advice for you.
The whole virus thing has been so difficult & isolating, especially when you’re struggling with other health issues. Thinking of you & sending you a nice, safe ehug!
We have a new member from TX who I think is going to see a doctor not on our list. She has a relative who had ES surgery done by said doctor. I’ll try to find out if the doctor is anywhere near you & will pass along the name as a possible resource if appropriate.
Being a hermit is no fun for sure but I totally understand your reasons. This is a hard time to get medical needs dealt with. I’m really sorry for the way Dr. Thomason treated you. Not professional.
I hope your situation changes soon so you can proceed w/ your testing & care.
Thank you. I hope you are well and sending hugs back!
Thanks so much! If the doctor in TX is anywhere nearby, I’ll see if I can get an appointment. There is so much going on with the pandemic. I hope you are safe and well.
Doing great here, shel. The local community has gotten tired of being shut in so are emerging in droves this week. Businesses & doctors’ offices are following the required COVID guidelines for the most part. Our quiet street has become a walkers’ paradise & at some hours of the day feels like a human freeway. I am glad to see people out moving though since I’m an avid walker/hiker.
I did PM the other member who I know is from TX but haven’t gotten a reply. She may PM you directly if she’s in your area.