I have been diagnosed with Eagles. Here is how most of my flare ups go:
feeling of foreign sensation in right throat. Painful for a few days.
ear pain and face pain
moved into sterno process pain
I can go weeks with this not happening and then bam it starts. I have never been able to tell the trigger.
Sometimes I feel like I’m going crazy. Does anyone else experience this? I have a splint and have had one injection in the site. Does anyone have any other advice on coping with this? Thankful for this group.
Hi @YoureNotCartwright ! I’m sorry to hear you were recently diagnosed and have pain in your throat. I have that too with a palpable lump when I reach inside my throat. I thought it was the styloid process but now after looking at my scans it may be the extreme tip of my hyoid bone on the right side. By chance are you right handed?
My way of coping after needing to get off Gabapentin for it being ototoxic and causing tinnitus is through my diet. I had to do a Paleo/Mediterranean/Lyme Disease diet to get my inflammation under control. I drink one gallon of filtered or bottled water per day and drink green smoothies daily too.
I am recently diganosed with Lyme and the folks in the Lyme facebook groups say Eagle’s Syndrome and fibromyalgia are symptoms of Lyme although I cannot confirm that. What I do know is I went on a Lyme diet as soon as I found out and it has greatly helped calm my ES pain. Enough to get off of Gabapentin for now.
I have radiating ear and face pain on the right and my right eye feels like its on fire. This is die to vagus nerve irritation and cranial nerve compression. I know the nerves are irritated and everything is “fine” so I tell myself it is just a feeling and nothing bad is happening. I just need to get to a surgeon, and that calms the symptoms. If I focus on the pain, it gets worse. Stay strong and check out the Surgeon’s List by state if you type that in to the search bar at the top. Very helpful!
Hi @YoureNotCartwright - the CT scan, especially if it’s w/o contrast, will only show the bony material in your neck i.e. styloids, hyoid, spine, skull, & anything that’s calcified. It won’t show inflammation. If you have elongated styloids, they are what are causing your symptoms by irritating nerves in your neck. Inflammation results from that irritation & likely adds to the symptoms already initiated by the styloids.
I think it’s time to debunk the misconception, that CT scan doesn’t show soft tissue.
CT scan, depending on how it’s taken, actually can show a lot of soft tissue, including muscles, variety of mucosal abnormalities, growths, and in some cases major vascular structures can even be seen on the CT scan without contrast (though it’s much more difficult and way less accurate). And in some cases it shows it very well.
The CT contrast injected into the vascular system highlights the flow of the bloodstream, thus letting the radiologist much more clearly see the exact place of the blood vessels, spots where the flow interrupts, lack of flow, small collateral blood vessels etc.
MRI, though, is much better at telling the type of the soft tissue, because different modalities highlight different types of molecules, e.g.fat, fluid, healthy tissue, tendon etc.
3D showed only bones because… It was configured to display only the signal with intensity matching the typical “bone” (and above, which usually is the CT contrast).
In radiology imaging, there is the concept called “windowing” which allows to focus on particular levels of signal intensity (different types of tissue/bone/contrast produce different intensity areas on the CT image):