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Mon, Aug 26 9:52am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

I can appreciate all that you have said, but…
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.

Wed, Mar 20 10:47am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

@empy The statistics note that 20% of the population have ES and only a few have symptoms. Doctors don't understand or don't want to. I recently saw a neurologist who said that it CANT be ES. I have had progressive and consistent symptoms for almost 10 months now, diagnosed 6 months ago. With neck pain that would not go away I kept pushing until I had an answer. The diagnosis was noted by the CT report. Once I had an answer it still took 6 months time for the head/neck surgeon to agree that I was a candidate for surgery. I am now waiting for a response from one of the docs in Philly for a second opinion on the best approach. My doc wants to do intraoral. It seems that the general consensus is externally. Ideally I hope to have the doc in Philly do the surgery, but getting my insurance to approve out of network may be a hurdle.

Tue, Feb 19 9:40am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

HI De9g. I dont have dry mouth but sometimes severe tooth pain and sensitivity. Is your dry mouth all day or only in the morning? If only in the morning maybe you sleep with your mouth open. It would be good to get the mouth rinse for dry mouth to protect your teeth. I was at my dentist yesterday for some dental work now my third visit in three weeks. He did not know of ES but he researched it and knows that the it may be a part or or all of what is causing the pain. I may need a root canal but he said "lets wait" until the ES gets resolved (surgery). He understands!!!

Tue, Feb 19 9:35am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Hi Elimpert96, Thanks for responding and for your prayers. My muscle spams dont last long but the residual pain sure does! I have a call into a surgeon in Philly for a second opinion – Dr Congnetti is known for ES surgeries and has a small publication on it.

Thu, Feb 14 10:50am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

I have posted several times here and I am so grateful for the support.

Last night walking home from the train I felt my neck muscles on the side towards the back spasm and tighten. All at once it become difficult to swallow and when I did the poking pain from the styloids felt like sharp nails – on both sides. The spasm felt like like it was pulling my head down into my shoulders. The spasms stopped but even today I can only best describe my neck pain as feeling like whiplash – very weak in neck and arms with knots painful to the touch.

Has anyone else had spasms? I am afraid to tell my ENT. Afraid to be send me off to yet another specialist. I'm home today from work using alternate heat and ice.

Also, I have often thought which came first – some sort of inflammation (like the initial cold I had back last June that started all of this). Inflamed neck that tightens the neck and then ES symptoms begin then never go away. Or is ES the initial cause of all of this? Thank you.

Wed, Feb 13 3:33pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Your story sounds like mine. All the best to you.

Wed, Feb 13 3:32pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Where did you have your first surgery? From what i understand the surgery done from inside the mouth is less invasive but typically doesn't remove all of the styloid to the underside of the jaw. No scar would be nice but I would gladly have a battle scar if it got rid of my symptoms. A lot of my pain is under my jaw and in my ear. I too have crazy tinnitus. My doctor is sending me to a neurologist before he will consider surgery. Another month, another test. My diagnosis was noted on my CT scan when they thought I had issues from a sinus infection.

Wed, Feb 6 1:50pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Hi de9g. I am so sorry to hear. I have most of what you describe and its a real quality of life issue. The head neck surgeon I am working with wants me to get a third opinion but in all the waiting it seems like things are getting worse. I am in NYC. I wish you all the best.