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Eagle Syndrome - Online Support Group

Symptom list

How beautiful! You’re lucky to have met our beloved Isaiah! I’m thinking of using meeting both her and Jules as an excuse to travel one day, lol.

You sound ready - the mental part is huge. Update us as much as possible and we’ll be able to address any questions you might have about recovery.

God bless!!!

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If only we weren’t so far apart! If you do travel to England let me know!

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Good luck today Redbird! It’s the start of a new life…sending you positivity!

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I definitely will, Jules. Thanks:)

I’m just reading this and thinking how did you get into my head and snatch my symptoms? Oh my goodness, right down to the beta blockers…

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I am just in shock that I also have every symptom you listed.I seen an ent today and he is not really confident in doing the surgery but is signing me up to do one at a time

Can it affect nerves in the hand or leg - on my left side which tends to have more ES pain - I have been experiencing tingling in my hand and arm and today my left foot (as well ad pain in the back of my thigh). I’ve put this down to Carpal Tunnel - I sit at a desk and do a lot of computer stuff.

Also, last week, I had what I would describe as a flare up of ES on my left side. There was an incredible sharp pain behind my tonsils and seemed to be my Hyoid bone not budging. At the same time, I became really lethargic and had difficulty just moving around for a couple of days, like my body was made of lead. Also became really confused and said stuff like “I know where that is, its outstairs” - Now the flare up has gone so too has the lethargic, confused feeling. Has anyone else experienced anything similar?

Hi Mafre,
I have similar symptoms and get flare ups that can knock me down for a day or two. In the past I would have said that it was a bad cold or the flu, but I now attribute it to ES. My throat would hurt more but not in the same way as a typical sore throat and I get extremely lethargic. When I am lethargic I am useless at work and cant get anything done.

I am glad to hear that your flareup has past.

All the best to you.

Thanks @BrooklynGirl - sounds very similar.

Have you noticed any pattern with the flare ups? I was trying to work out if I’d turned my neck more or perhaps it’s to do with stress but it seems to be random and the bone / calcificied ligament is moving randomly behind my tonsil.

Others have noticed random flare ups with no noticeable cause. I would say though that mine was always worse if I had any sort of virus, cold etc., so it could be that you’ve had a bug you’ve fought off & that’s caused these symptoms?

Hi Mafre,

I got terrible vascular symptoms when I exercised (prior to my ES surgeries). The symptoms would last for a number of hours after I stopped exercising. There are sometimes things we can pinpoint as “for sure” causes of symptom flare ups & others the causes seem pretty random.

@Mafre I get similar symptoms. I think some is related to the hyoid but I’m not sure. When it’s rotated to one side I get more discomfort in lower throat (way below the tonsil area at the back of the throat), I have a harder time swallowing, I don’t feel well, and I get dizzy and tired. I’m still trying to work all of this out but I think those symptoms are separate from the ES. I had the styloid poking the tonsil (visible bulge in back of throat), recurrent sore throats (like I was coming down with a respiratory bug), and the facial nerve pain associated with the ES, which are now gone. I still have nagging pain in my neck on the surgery side that no one can figure out and the symptoms I am chalking up to the hyoid bone. The neck pain (thyroid/larynx area) can be made worse with stress. The hyoid symptoms are worse when it is in the position that makes the left side stick into my larynx/esophagus. If something pushes on my neck or throat or I sleep wrong it moves to this position. Swallowing food may also make it move to this position on occasion, as it can happen randomly throughout the day and I don’t know the cause, but the bone is sticking farther into my throat so I know it has tilted again. There must be a nerve trapped in there or something when this happens. Still have the tinnitus and some very minor ear pain but the stabbing pain is gone since surgery. Can exercise much better since surgery. Taking 7 mile walks again. Have to be careful though since dehydration makes the palpitations worse.

redbird773 ~

WOW! You’ve seen a lot of improvement in symptoms since your surgery! That is FANTASTIC!!
If you elect to have your remaining styloid/ligament taken care of, I’d bet you’ll have full or nearly full eradication of your left over/new symptoms.

Do remember that some symptoms tend to come & go as nerves heal & things that are still “upset” (i.e. neck pain) may very well resolve w/ more time.

Thanks, Isaiah. All of the symptoms now are remaining…no new ones. I’m not ready to have the second side done yet. That side gives me almost no pain. Also still trying to adjust to the scar on the first side. I’m honestly so much better overall since surgery, so I’m not planning to schedule the second side unless things get worse for me. Hope you are feeling well💕

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@Mafre wierd i had a tingle in my left leg that started same time as head/face tingling started from eagles. I asked nerologist and he said it wasnt related but what could it possibly be? I had surgery last year and nerve tingles still come n go. I also got pregnant righht after my surgeries not sure if its affecting anything. Leg tingle back this week driving me nuts :frowning: I sit at a desk for work too but i never had issues for years not until i got tmjd and then eagles.

redbird773 - So glad to hear there are no new symptoms & that what you currently experience is tolerable. It would be really nice for you to be able to skip a second surgery. I will pray for you to that end.

Your recovery has been fairly remarkable considering how bad your symptoms were. I’m very thankful for that, & I know you are, too.

:hearts: :rose:

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cupcake5 -

Your tingly leg is probably unrelated to ES as the nerves that would cause that most likely are spinal nerves in the area of your lumbar (low back) spine. It isn’t uncommon to have leg & foot tingliness during pregnancy because as the baby grows & moves around in the womb, it can settle on the sciatic nerve or rest against other spinal nerves that create back, leg, & foot pain/tingling.

I used to have to get on my hands & knees & do “cat/cows” (arch back then let it sag i.e. spinal flexion & extension) for up to 20 min. to get my baby to move & get off my sciatic nerve. It did work though & whatever back, leg or glute pain I was having would stop.

I am brand new to this site, but it has already helped me make sense of what is happening. Thank you to everyone who are so open and willing to share in order to help others.
My symptom list: dizziness, problems swallowing (I can no longer swallow pills), tinnitus, ear pain, ear popping, pain in my throat, inability to open my mouth wide, headaches, tingling in face/head, neck pain, and neck popping when I turn to the right. I also have bulging discs from c-3 to c-6 and bone spurs on c-5 and c-6.

My potential diagnosis came when my dentist discovered the ligaments in my jaw are calcified. He dismissed it, but I began doing some research on my own and that’s when I found out about Eagle Syndrome. I brought this information to my doctor at the VA and she ordered a set of x-rays. The report came back with probable stylohyoid ligament ossification and now I’m waiting to be scheduled for a CT and a referral to ENT.
I have included a picture of one of my x-rays just to see if anyone notices anything regarding my ligaments or the styloid process itself. Thank you for any advice or help you can provide.

The styloid looks quite long & pointy, there’s a possible little bit of calcification further down too. But obviously we’re not doctors!