Hello everyone. I had previously been diagnosed with Diffuse Idiopathic Skeletal Hyperostosis (DISH) which causes bone spurs and stiffening and calcification of cartilage and ligaments throughout my body. I found out that ES can co-exist with DISH. For the last year and a half, I have been having a tough time swallowing. Initially we thought excess bone growth might be causing the swallowing problem as DISH is known to grow bone in the esophagus area that can hamper swallowing. An endoscopy ruled that out.
For the past few weeks, the side of my face has been hurting, my ear has been tingling and there is pain above the ear. The swallowing problem has increased. I went to my dentist who ruled out an abscessed tooth and then told me that I could have Eagle Syndrome. For the past three weeks my ENT had given me two courses of antibiotics thinking the facial and swallowing issues were related to Sinus problems. The antibiotics did nothing to help the problem, and I do not have any symptoms of sinus infections now.
The ENT had previously scheduled a CT scan to check my sinuses this week. I am going to tell him about all that I have found out and hopefully he is knowledgeable enough to understand this. The CT is done in his office, and he will read the images while I am there. I don’t think it will have contrast and I am not sure about the 3D aspect so he may send me somewhere else to get a CT. My concern is that my symptoms seem to be progressing quicker than I have heard from other people’s experiences. I am going to check the advocacy section, but I am wondering do I really have to explain this syndrome to an ENT?
I’m sorry to say there are many ENTs who are ignorant about ES or downplay it because, “It’s so rare you couldn’t possibly have it.” That comment is made even to patients who have obvious ES symptoms AND their CT scans show elongated styloid processes. I’m hoping for your sake that the ENT you see has at least heard of ES & is open to investigating it further if (s)he doesn’t have much knowledge about it. You can also look through our research paper section to see if you can find any that mention your symptoms then print them & take them to your appointment.
Here’s a post by our other moderator @Jules with extensive information about ES symptoms. You’d be welcome to print that & take it with you as well:
If they’re able to do the CT from your skull base down to your hyoid that would be helpful- there’s info about converting these to 3D on here if you can get this & also get copies of the imaging? And as @Isaiah_40_31 says, we suggest that maybe you bring a research paper with you to show your ENT (if they’re receptive, some get umpty about it!)…
We’ve had members who’ve literally had symptoms come on overnight, others whose symptoms are minimal for years then suddenly ramp up, so it does vary quite a bit, try not to worry about that…
If you don’t get anywhere with your ENT, then hopefully you could get to see another doctor on the list.
I am so sorry you are experiencing these symptoms! I agree with the suggestion of making sure the CT scan goes low enough. One less scan to have done again if you can help it.
Even though you probably know this, second (and third lol) opinions are completely worth it if your ENT isn’t aware or educated on Eagles.
Thank you all. If can’t move forward with my ENT I’m planning on contacting Dr Osbourne and I have a great primary Dr who I know will order a CT scan if the ENT doesnt. I appreciate all of you so much for your inputs and for caring about me!
Make sure to ask for CTV (CT Venogram) of head and neck - that is with and without contrast. Good luck. Sharp dentist. When I first started having shooting pain up my neck to my ear, I finally found a doc that gave me RX for dexamethasone which knocked down swelling and gave me some relief. Book Dr. Osbourne now to CYA as it may take time to get in. You may nee a referral though. best of luck. You are in the right place.
You or the doctor who referred you for the CT need to ask for the radiologist to look at your scan again & comment on your styloid processes & stylohyoid ligaments. If your doctor requested diagnostic imaging for ES, then the radiologist totally missed the boat or doesn’t know what causes ES (i.e. styloids/calcified stylohyoid ligaments). When I had my CT scan, I told the radiology tech why I was there as I wanted to make sure he imaged the right area of my neck. His response was, “Oh I do Eagle Syndrome scans all the time.” I knew that wasn’t correct since I’d just been told by my diagnosing ENT how rare it is. The radiology tech did get good images of my styloids though.
Just wanted to pass the word that I talked to the radiologist, who was very understanding, and he says it does not appear that I have ES. My styloids are not elongated and everything else looks fine. I want to thank everyone one who helped me with this and I wil be praying for all of you all!
@Papawdil - Please do not take the radiologist’s opinion as “gospel”. We’ve got quite a number of members who were told their styloids were “normal” when they were significantly elongated OR they were normal length but extremely thick or growing very curved or at very steep angles, all of which can also cause symptoms in the absence of elongation.
You need to get a CD of your images from the radiology clinic & upload them on your computer or have someone help you do this. You can use 3D conversion software (radiantviewer.com for PCs or Bee Dicom Viewer App for Macs) convert your images to 3D so you can see what’s going on. The radiology clinic where you had your imaging done, may also be able/willing to provide you some 3D images of your CT.
