My story - anyone have BOTH of the 2 types ofEagle Syndrome?

I’m referring to the “classic” type on one side and the carotid type on the other side. I’m pretty sure this is my situation although the dr I’ve seen doesnt call them different types or even recognize the different symptoms…

So this is me…
Intermittent Balance problems
Intermittent vertigo
Bilateral Ear fullness/pain
Intermittent headaches
Intermittent eye/orbital pain
Pulling sensation under the ear
Feeling of something stuck in my throat for about 2 months but not now
Intermittent swallowing problems

Constant jaw/teeth/under mouth/side of neck aching on left side. Left styloid measures 3.7 cm also the ligament is fully calcified.

Intermittent extreme pain on right neck. Right styloid measures 4.6cm and calcified ligament can be seen in my mouth near my right tonsil on a scope.

Im having surgery on july 17 and had to pick one side. Surgeon first said right because its longer but i said most of the pain is one the left so he said no problem, we’ll do the left. I’m now having doubts about picking the left side. If the right side is the carotid type, it poses more risks…

2nd surgery will be the end of november.


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Mine was on one side and pressing on my carotid

It caused serious vertigo, migraines and loss of cognition

I had exactly what you’re describing w/ very similar symptoms. My surgeon also didn’t differentiate between types of ES. My right side produced vascular symptoms & my left side pain & pressure. My surgeon chose the side to be done first because he was concerned about the thickness & angle of the right styloid. He didn’t give me a choice, but his decision was for the best. I could & did live w/ the pain on the left side for 9 months after my first surgery. Having my right styloid shortened first, thus ending the scary vascular symptoms I had, was more important than taking care of the more painful side first.

Based on my experience, it’s my opinion that you should have him remove your right styloid & ligament first if they’re causing vascular symptoms.

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Not all doctors recognise vascular ES, or understand the symptoms, but if your doctor’s happy to operate and prepared for any risks in surgery then that’s the main point.
It’s down to you which side to get done first- the risks of anything happening while you wait until November if you have vascular ES are very rare, so if you’re feeling you want to get rid of the pain, do that first… it can take nerves etc. a while to settle down so you may still have some pain for a bit, whereas often the improvement with vascular symptoms are noticeable either immediately or once swelling reduces. But often when members have one side gets done, the second side can get worse for some reason- so that’s something else to consider.
For me, the vascular symptoms were worse than the pain- I was lucky that I rarely had severe pain- so getting rid of those symptoms was the deciding factor for surgery, and I felt better within a day- no more dizziness, ear and head pressure etc.
Best wishes for July 17th!

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Thanks for replying. Yes i feel great about my dr… 2nd one i saw… i researched him first and he’s very nice, easy to talk to And has done this surgery quite a few times. He Looks for the main symptoms and doesnt necessarily believe some of the others are related to it but hes curious if they are relieved by the surgery. The 1st dr i saw was very narrow minded and didnt believe ES caused pretty much anything other than pain and wasnt open to learning more.

Thanks for your response… very comforting to know I’m not alone and glad the surgery worked for you? Why did you have to wait 9 months for the 2nd surgery?

I had a similar story and wondered after I decided which to do first…If your doctor thought you were making a bad choice I am sure that they would try to convince you to do the other side? Go into the surgery with positive mindset and follow doctors advise to recover quickly so you can have your second surgery. I was able to have my 2nd 3 months after my first which was perfectly aligned with my recovery of my first side.

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Good advice. Thank you.

At the time I had my first surgery, my surgeon required a 6 month recovery period before he would do the other side. One week to the day before my second surgery I had a terrible bike accident (possibly caused by my ES) w/ a head injury (concussion) and a mangled face . My surgeon said putting me under anesthesia w/ a brain injury was dangerous, & my surgery would need to be put off 3-4 months. I cried. By the time I was 6 months out from my first surgery the symptoms from my left side had intensified & were driving me nuts! I did, however, survive the extra 3 months and had a successful second surgery. I am 2.5 years out from my first surgery and almost 2 years out from my second. I am happy to say my ES symptoms are mostly gone. :grinning:

I’m so glad to hear you’ve found a surgeon you’re comfortable with. That should make all the difference in your attitude as you face surgery. I went fearlessly into both my surgeries because I trusted & had confidence in my surgeon. I really think having a positive attitude helps with healing in the long run.

How horrible! So glad you are ok now!

I have a few surgery questions…
Did you have a drain? If so for how long?

What pain meds were you one and how long did you need them?

How long did you stay in the hospital?

Different doctors do the op slightly differently- I had a drain in so was kept overnight, and it was removed the next day; I’m sure it helped with swelling as I didn’t have too much. I had painkillers in hospital, was sent home with codeine but didn’t need it- just used paracetamol and the amitriptyline I was already on.
A lot of doctors give medication to help with swelling etc and stronger painkillers, and often you’re sent home the same day, so it’s a go idea to go through all that with whichever doctor you decide on.

I’m staying overnight and will have a drain and I am allergic to common painkillers so hoping to just use ibuprofen and tylenol. Thank you for the info!

Thank you, Cadeley! It wasn’t a fun experience all the way around. But I’m a great testimony to the fact that our bodies were made to heal when injured.

My surgeon does his ES surgeries in an outpatient clinic. I had no drain & went home after I was awake enough to walk. I was given prescriptions for prednisone to control swelling & percocet for pain. They both worked admirably. The only problems I have w/ opioid pain killers are feeling loopy & constipation. With that knowledge, I start dosing myself w/ magnesium citrate soon after I start taking an opioid & that seems to keep everything moving just fine. Regarding post op pain meds, your surgeon will work with you to provide you with what will work best for you without causing problems. Please make sure to diligently remind your surgeon & his staff that you are allergic to most prescription pain meds so they don’t prescribe something that will give you a problem post op.

When your surgery date is set, you should review the post op care list that seamom posted (not sure how it was titled for you to do a search - maybe Jules or seamom can help w/ this). Following it will give you the best chance of a seemless recovery.

seamom did a surgery shopping list:

Thank you, Jules.

Wow your journey sounds so familiar. I also have symptoms of vascular and general ES. So conclusion I am a patient with ES.

I too chose which side to operate on first. I am happy to say I am four weeks post op. Doing well some symptoms subsided, some I am still waiting patiently for total relief.

Meditation and relaxation is helpful in recovery, for me anyway, not an easy task for a super energetic person. ES can take so much out of our lives.

Pain is debilitating, life stealing. Let’s take it back. LIFE.

Good luck with your surgery. Happy healing.

Sending fast healing wishes today for your surgery! Please let us know how you are doing as soon as you are up to it :hugs:

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They found out i had a nerve twisted info the ligament so that doubled the surgery time. I have a mouth droop from them stretchimg that nerve that he said will go away in 1-4 weeks. Right now i am on multiple pain meds and cannot get passion under control. I don’t want to stay longer but he said they won’t send me home until pain is under control on oral pain meds alone… hoping to sleep soon

Hope that you are soon in less pain and can get home. Sending you a hug and will pray for swift healing. :bouquet: