I am 31 years old and have had a feeling of ear fullness on my left side since June (about 4 months). The area behind my ear is also tender. I have some of the other symptoms such as headaches, dizziness, and fatigue. I have seen 3 different ENTs who said nothing was wrong with my ear and have had an MRI of my neck and CT of my temporal bones/sinuses. The ENT originally said that I had TMJ, however my jaw is not sore and PT for TMJ has not helped.
I recently saw a neck specialist and she is suspecting that I have eagle syndrome. She ruled out other issues with my cervical spine with a second MRI specifically of my cervical spine. It is challenging to see my styloids on the imaging (both MRIs and CT) based on the imgaes presented. I may need to get a second CT specifically to look for eagle syndrome.
I wanted to see if anyone has reccomendations for providers in Boston or really anywhere on the East Coast. I have seen reccomendations here for Dr Annino and my current provider is going to try to consult him directly since he is within the health system. I also want to start exploring a second opinion as I know there are long waits with some practices.
You can also use the search function for info about doctors in your area if you’ve not done that already, & if you don’t get many replies about specific doctors…
Given your symptoms, as headaches, dizziness & ear fullness can sometimes be caused by the styloids compressing blood vessels, it would definitely be worth having a CT with contrast done if you’re thinking about having more imaging? If so, I would specifically request that the CT is timed to capture both the arterial and venous phases to check for any compressions.
If you are able to travel, as you’ve mentioned the East coast then Dr Costantino in NY or Dr Cognetti in PA would be good to think about seeing. Dr Cognetti does have a longer wait I think. They are both experienced with vascular ES if it does turn out you have that
Wow what a week but I think I finally have a diagnosis!! After September I continued to see new ENTs and also TMJ specialists. The TMJ specialist I saw most recently suspected jugular vein compression from eagles or thrombosis and ordered a new CT to look at the vasculature. In parellel I had a friend who is a radiologist look at my images from August and she found craniocervical pneumonization. The updated CT found no vascular issues (or eagles - they finally measured my styloids and commented on position) but confirmed the craniocervical pneumonization finding. Working with the ENT team next week to address the finding. The condition is ultra rare (even more rare than eagles ) so the treatment plan is not straightforward.
Posting now becasue I know others may find hope in seeing diagnoses confirmed. It was a long 7 months to get here and I could not have done it without the support of this group. When providers are constantly telling you nothing is wrong it is hard to continue to push. I encourage everyone to keep pushing, you know your body and if something is wrong. I was extremely fortunate to have good access to care (although there were still some long waits for appts) and basically unlimited flexibility at work to leave for appts and phone calls. The system is broken, hard to navigate, and fragmented across specialities. Hang in there everyone, it is tough out there but your efforts will pay off!
I will be praying for you! I am so happy that you have an answer and hope that your healthcare team can alleviate the symptoms you are experiencing. You are right, we all know our bodies best (even when being told otherwise).
Very well said, @Katie2. It sounds like you have a bit of a journey ahead of you, but at least you have a diagnosis now. I hope your doctor(s) are able to find ways to provide symptoms relief for you soon.
Well done to your friend for spotting the pneumonisation! I hope that the ENT team are able to help you resolve that… Did they give you measurements of your styloids out of interest? Not wanting to be pessimistic, but we’ve seen members on here who’ve had reports saying styloids aren’t elongated when they clearly are!
) so the treatment plan is not straightforward.
