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Eagle Syndrome - Online Support Group

Fine.Ah.Lee - Finally, a DX!


#1

Hello Eagle’s Warriors:
I have finally received a rather decisive diagnosis!

Quick background: I’ve been dealing with this thing (and I trust you know what I mean by “this thing”) for going on 5 years. I’ve seen many doctors, had every test and imaging study, and received all the therapies. One ENT gave me a very tentative and very reluctant diagnosis of Eagle’s then sent me off to a special-specialist who then gave me an anti-Eagle’s diagnosis (“I don’t know what it is, but it’s definitely not Eagle’s”).

Fast forward to the near present: In my never ending quest for answers, I went to my dentist to be evaluated for TMJ/TMD – I mean, at this point, I’m just trying to tick off all the boxes…might as well include my dentist. He says it’s not TMJ/TMD and refers me to a dentist in Other City (multiple hours away) who specializes in mouth/facial pain and TMJ. I make an appointment and his office sends me the initial paperwork. I’m thinking it’s the usual stuff: medical history, RXs, family history, but NO. This is a battery of questionnaires that took me more than half an hour to complete. He asked things like do you sleep on your side or back? do you sleep on your right or left side? do you chew gum? what are your symptoms? where do they occur? when do they occur? etc.

Fast forward to today: I get up early and drive to Other City. When I arrive, I pass along my battery of questionnaires and CDs with CT and MRI, and his office calls my dentist to obtain my panoramic X-ray. I wait for a few minutes in the waiting room and then get called back. The doctor comes in, asks me a few questions then says, “Your symptoms don’t fit exactly, but I think you have Stylohyoid Syndrome.” He proceeds to show me my pano X-ray and CT and explains that my styloids are longer than average. Next, he does a full exam and based on the pain elicitation, confirms that, yep, I’ve got Eagle’s.

I can’t tell you how relived I am – and vindicated! I don’t know what the next steps are, but I’m on top of the world just knowing that I’m not crazy and that I was right to think it was Eagle’s.

I know you can all appreciate my story and thank you for reading if you made it that far. You have been a great support to me as I’ve gone through this process, so THANKS!


#2

After all this time…glad that you’ve got a diagnosis! Well done for hanging in there & not giving up, I think the perseverance award definitely belongs to you! Hope that you can find the right doctor to do your surgery if that’s what you want to go for…


#3

Thanks, Jules. Without this group, I’m not sure how much longer I would’ve persisted. I’m still just so relieved.


#4

Goodness! This website could be called “living with Eagle despite being told you don’t have it”!!! Identical story here in Georgia. Although my TMJ dentist was happy to take my money for a mouthpiece I didn’t need. I was so lost after an ENT at Emory said “it’s not Eagle”. But my list of symptoms, but the click you can feel from touching my neck (he had the nerve to say that was normal and I pay to much attention to it). I thought I was going to have surgery with this guy. He showed me the way to the door and like you I had to start at square one. So far it sounds like you’re having a typical ES experience. Keep going! I was so happy when the second ENT walked in after seeing the same CT the first guy did (:thinking:) and said to me “I suspect you’ve heard of Eagle syndrome?” Yes I have and can I hug you now? :stuck_out_tongue_winking_eye:


#5

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#6

That’s brilliant news I’m in same boat without this group I’d go effing mad lol x


#7

AMS - We’re so glad to be here for you!!

:blush:


#8

Well done to persevere . It’s a brave thing to keep going up against negative and Uncompassionate people that have no idea how destroying and painful eagle syndrome can be!! Xx