Eagle Syndrome - Online Support Group

Bilateral calcified stylohyoid ligament


My eyes are completely rolled back in my head at the level of incompetence you’re experiencing, Shane.




Needing to find the silver lining… I recently got back the report from a 72 hour EEG… turns out the episodes of confusion, sweating, sitting/standing in a trance, mind blanking, short term memory loss, is not epileptic, or its not my brains fault. im convinced its the eagles. also i got back an allergy test that says i have no allergies whatsoever. so my nose being stuffed 100% of the time is most def eagles.

Thank you for your support. if it weren’t for this amazing group, i would’ve given into this suicide disease. i can barely talk on the phone because theres some noise that i hear thats a million times worse than nails on a chalkboard. which makes me sad for these kids these days never knowing that sound. im also worried that im only going to get a surgeon thats going to just snip the ligament and leave all that bone in there. where ill get some relief but not enough, and the VA will call it good and done.

i almost cried on the phone today twice trying to get these people to care.

ive already been toughing it through this pain for 10 years, thinking its normal. haven’t i suffered enough. and now i know the source of the pain and its like its invisible or im speaking a different language to the doctors. making me fight for peace, while these doctors mishear me, and pass me off to someone else more incompetent than the last. is this my karma from a past life to suffer?



We really feel for you & are so frustrated as well…I wish there was something we could do for you, listening doesn’t seem enough…I’m glad that you do find coming on here helpful at least. I’ll keep praying that you get some help soon, big hug to you…



So glad all your tests turned up negative & ES can at least be blamed for the moment for all the weirdness you’re going through physically.

I don’t believe it’s in anyone’s best interest to suffer over the long-term, but I do believe that suffering makes us stronger. It helps us to be resourceful & determined (to find ways to end the suffering). It helps us to build patience, compassion (for others who are suffering), strength, endurance & as you noted to find the “silver lining” in the midst of a bad situation. Good for you for doing that. May there be more than a silver lining for you soon - a glorious sunrise would be nice! :sun_with_face:



UPDATE: we’ll see where this goes, but After I called Dr weingarten trying to make an appointment to go over his incorrect report of my symptoms, and to request him to put in for a specific procedure “resection of the stylohyoid ligament.” His nurse told me to send her a letter via email, and he would send an addendum to the VA based on what I wrote. So I wrote it and sent it off a couple days ago on Thursday. I also asked him to send it as urgent so I won’t have to wait weeks and weeks. I hope this is my turning point.

I just gotta say, recently within the last week or so my pain has escalated, almost doubling in intensity and frequency. Then my wife came home from a trip which she got a virus or something that gave her a sore throats and runny nose. Now I have said virus. HOLY HELL!!! I thought everyday was a torture before! Turns out it can get much worse! MUCH WORSE! Please universe help me soon!!!



Ugh that was my biggest fear last fall. I said to my husband “A cold would put me over the edge right now.” There was a stretch there where even swallowing my saliva was tricky until I figured out how to retrain my muscles to force the swallow when the hyoid could not freely move. Congestion and soreness in that area is something to be avoided if at all possible! Wash hands, no kissing! :stuck_out_tongue_closed_eyes:
I have some faith in the word “urgent” typically. Fingers crossed!!



And that’s how it was initially when she first got back until i got a tickle that wasn’t eagles related, then I realized I’ve been periodically taking sips from her water bottle at night when I was thirsty and out of my water… eagles has made me so absent minded



Oh so you think you got it? Bleh. Hopefully it’s short-lived. I had days when I didn’t trust myself to drive before surgery. I just didn’t trust my reflexes, I felt SO out of it.



:sob::sob::sob: I’m so sorry! How annoying, painful, frustrating that you’re sick…I totally get the absent-minded thing. I drink out of my husband’s water glass at night when I forget to put one in the bathroom for myself. If he was sick, I wouldn’t likely remember till morning since I’m usually half asleep when I “borrow” his glass. :roll_eyes:

As SewMomma said, hopefully this will be a quicky & your body will get on top of it FAST.

I’ll be praying Dr. Weingarten’s ofc is ON TOP of your situation & gets that updated report to the VA early next week. Glad you didn’t have to make another trip to his office & nice that he is willing to amend his initial findings.



Oh yeah, today I’ve felt delirious. With a runny nose that’s worse than usual, I’m weak. Usually the front of my throat and sides of my throat hurts, now the back of it has sand paper. Ginger lemon tea with honey is doing well to keep it from getting worse.



Shanef89 ~ Good job finding a holistic remedy. Ginger lemon tea w/ honey is a great combo any time! You could also try gargling w/ salt water & swabbing your nostrils w/ it. I’ve read that it changes the pH in the throat & nose & makes the environment more hostile to the virus. I think it’s 1/8 tsp salt to 1/4 c. warm water. You don’t want it to be too gaggingly salty though so you may need to experiment w/ proportions. Try this several times/day for the next several days.



I did 1 tsp to 1 cup ratio but I haven’t tried up the nose though



This is the last thing you need, I’ve found any time I get a virus like that it made ES symptoms worse, so I’m thinking of you…
I hope that the report does get changed for you & urgently!



I use Q-tips for the nose stuff but if you know how to do the neti cup nasal rinse that would most likely be even more effective. My sister uses that method to help relieve allergy symptoms. She said it’s very effective but she felt like she was drowning the first few times she tried it. Now she’s a pro.



Ima try that, cuz the tea has really cleared the throat scratch, now I need nasal relief.



Good to hear some cold symptoms have started to resolve. May it be your last bug before the BIG bug(s) get removed :grin::cricket:



You may want to do a more dilute saline solution for your nose especially if you’re doing the neti cup method. Don’t want to burn those delicate nasal membranes!



Good point will do!:sweat_smile:



UPDATE: I just got amazing news! In an effort to get the VA to do their job I contacted Dr Osborne for his consultation notes from our skype session. In doing so, I found out that he received the impression from that Skype that the surgical risks weren’t worthwhile in his opinion. Instead of letting it go. I decided to write why I felt it definitely was worth the risk, in my opinion. Which then led to a phone appointment 12hours ago. In that phone appointment he said he is willing to do the surgery for me. And have it paid for through his foundation! I just have to get myself there! I still haven’t been given a date yet, but this is the greatest day ever right now! My wife is scared that he’s gonna go through the neck and leave me with two huge scars, while I couldn’t care less about something so trivial. Has anyone gotten a extraoral surgery? If so how noticeable is that scar?



That’s great news! In the search box (magnifying glass) type in extraoral surgery. You will get lots. Many people have such tiny scars it amazes me - I hope mine is anywhere near as small. 6 weeks is too soon to tell.