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Eagle Syndrome - Online Support Group

Hello to all. Intro and images. Thanks for any feedback!

Hi everyone,
I’m new to posting here, though I have been reading the boards for quite some time.
I was initially diagnosed with possible Eagles Syndrome while living abroad in Thailand. I had been visiting an ENT there with various symptoms like difficulty swallowing, the feeling of something catching in my throat, very painful neck when turning my head, clicking sensation deep in the ear and some ear pain to name a few. After ruling out many other possibilities and many incorrect diagnoses, she finally came back with probably Eagles Syndrome. This diagnosis was approximately 5 years ago now. I sort of left it there and did not pursue treatment or any other options.

To be quite honest, I never considered surgery while living in SE Asia. Over the past 5 years or so, I have grown accustomed to all the not so nice symptoms mentioned above. However, now that I am back to the US permanently and in light of the fact that my symptoms seem to have been getting worse in the past few months, I am back to researching my options and think I may need to address the problem.

I am attaching the original scans I have from 5 years ago and hoping for any feedback at all from those here with more experience. I certainly plan on visiting an ENT here in the US now that I’m back and will get the prices started.
With COVID19 here at the moment, that might be a bit difficult to schedule, but any sort of feedback here would be awesome.

From what I have researched on my own, it seems my scans are certainly positive for Eagles Syndrome, as well as all the symptoms I’m experiencing.

Thanks in advance and I am so happy to have all the wealth of information here from all of you!

get the *process started… not ‘prices’ :grin:

Oh, man! Long chopsticks, no doubt…

If you don’t mind my asking, do you feel dull pain when turning to one side and more sharp pain when turning to the other side (guessing more dull right, and more sharp left), and also turning to one side also causes one shoulder move up/forward, while turning to the opposite direction won’t?
These are my observations on myself, as I also have one styloid quite longer than the other (approx 6cm vs approx 4.7cm or so)

@vdm
In these past few months symptoms have gotten much more noticeable / worse.
I have pain when turning to either side. This scan was nearly 5 years ago, so I’m wondering if maybe they have grown even longer :flushed:.
I haven’t noticed shoulder movement, but I am having a radiating pain into the shoulder and wondering if even that is somehow related to a nerve being pinched.

I’ve also been noticing a very disconcerting ‘crunching’ or ‘squishing’ sound when moving my neck / turning my head.
I’m definitely looking forward to getting into an ENT here soon, but again with COVID it may be awhile.

Are you looking into surgery as well?

Looking at the scans, your stylohyoid ligaments are calcified all the way from the styloid process to the hyoid bone! So they would need removing as well as the styloid processes shortening. It’s fantastic imaging; I don’t think I’ve seen as complete a calcification as that! But obvs we’re not doctors on here…It is posdible to have elongated styloids /& or calcified ligaments without symptoms- in which case it’s not classed as ES- but I’m surprised that your symptoms aren’t worse!
In the Doctors Info we have a list of doctors familiar with ES if you’re considering surgery now- the 2019 one is the most up to date. Otherwise some members opt to see one of the very experienced ES doctors, & are willing to travel, like Dr Samji in Ca for example. He does phone consults & you can send scan results for him to review to save travelling.
Good luck, I guess the virus will halt things…

Wow! If we were giving out prizes you would win one:) I hope you find relief soon. This is such a tough time in history to need elective surgery, but you have such clear imaging hopefully you can get a phone consult so you are ready to roll when the COVID-19 infection risk is lower. You didn’t mention medications, but that is possibly one road to go down while you wait for surgeries to become available. I wish you all the best

@Jules Strangely my symptoms seem to come and go…though lately they have been bothering me more which is why I’m seriously considering surgery. I think I have just learned to tolerate most of them and have forgotten what it feels like to be pain free, especially when turning my head. I have downloaded the doctors list, thanks so much! I plan on reaching out to Dr. Samji as I absolutely want to consult someone with as much experience possible re. ES. I appreciate your advice!

@onelessstyloid Ha…yeah, I’m not sure if that’s a prize I am too excited about :wink:
The thing is, this was imaging from already 5 years ago…I’m concerned they may have grown even longer, which is why my symptoms have become worse.
I’m surprised this is considered an elective surgery still, but it seems to be the consensus. I may look at medications if the symptoms don’t abate or get worse…
Thank you for the reply! I’ll certainly be updating as things move forward.

@AaronH, I have replied to your msg in private

Wow…crazy images. Isn’t is surprising what the human body can adjust to and make into our “normal”. I am having what seem pretty normal post op symptoms but am 100% grateful and happy that I was diagnosed and surgery was done. Best of luck to you. :four_leaf_clover:

I went through an almost exact process as you. At first, my dentist pointed out the calcified styloid process in a routine head xray, and I promptly forgot about it. A couple years later I was having a dull pain near my tonsils that would not go away. I remembered what my dentist had said and went to talk to my doctor. My doctor referred me to an ENT who had me do a CT scan. The ENT said surgery and that he would also need to remove the tonsil, as well as the other tonsil to keep it symmetrical. I got the impression he was just trying to make some money and, like you, I was starting to just get used to the pain. A few years later the pain came back stronger so I went to another ENT I had seen on a list here for ENTs that have done the procedure. This guy said, no need to remove either tonsils when doing an intra-oral surgery, he could use this special tool to ‘crawl’ up the styloid. He also said that ultimately it was a lifestyle decision and that I should do the surgery if the pain was too disruptive. Soon after that the pain mostly went back to what I was used to and I haven’t bothered with it since, but I suspect someday it might return and I will have to do the surgery. So the short of it is, if you can’t manage the pain with painkillers (I was given gabapentin but don’t really need to use it), then you’ll need surgery. Surgery can have complications due to there being lots of nerves around the area, so it’s something that ultimately only you can decide to proceed with or not.

PS - I just noticed you’re in Oregon like me. The second ENT I saw was Dr Patel, who I recommend. https://www.legacyhealth.org/providers/andrew-patel

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I agree that “elective” doesn’t do this procedure justice, but it seems that right now everything that is not an emergency procedure is being postponed. I absolutely understand the need for this triage at the current time, but it is so frustrating to have to wait for all of these symptoms to be treated. You are of course the expert on your own path, but I will offer that gabapentin has been enormously helpful to me in keeping symptoms to a dull roar and I know others have had luck with different anti-epileptic and antidepressant medications.

@pepelucho Hi fellow Oregonian.
I will look into Dr. Patel for sure. Thanks much for the info! The pain is far from debilitating at this point, but it’s just a constant issue and the opportunity to have relief from it with surgery is something I will need to weigh for sure.

@onelessstyloid. Thank you again for the info. I have never used any sort of pain killer in the past, but if it comes to that, I will certainly look into gabapentin-
:+1:t3:

@shayney Thank you~ Hope your recovery is smooth and pain free!

Hi Aaron. I had a tomography scan about 4 years ago and then CT scan at 1st of year. although not exact as they are different quality of radiology, doc says it did not appear to have “grown”. I have had yearly pain flairs since 2015 and common complaint was felt like bone in my throat. I had years of neck pain issues before that. It has worsened the past 2 years and the worst pain flair at xmas. A new neurologist who gave me botox, and nerve blocks suggested the “Eagles” syndrome in Nov. My pain has gotten to the point where I am desperate for relief and am choosing surgery.
I send my CT scan disk to Dr. Samji in early Jan and had a call back within 2 weeks. Flew into to see him 2 weeks later. He will do a phone consult as well. Depending on your insurance (he was a preferred provider so my insurance covered it), the cost is $350 for the review and consult out of pocket. I was supposed to have surgery next week with him but it has been postponed due to CV in bay area. :sob:
I expect the surgery will get pushed again based on how things are going and I am praying my neck/ear pain doesnt flair. I imagine if he is still in office, he has extra time on his hands to review scans and do these phone consults.

I hope that you keep well while you’re waiting, & hope it’s not too long…so tough for everyone right now, thinking of you.

Thanks Jules for the warm wishes.
Its been rescheduled for April 27th but I am doubtful it will not be pushed back again…potentially late May or June? A friend in medicine in the area tells me it could not be until August. :tired_face: I can wrap my head around pushing it out that far just yet. I was told no botox or paralytics 6 weeks prior to surgery so I had a nerve block and steriods to try and keep in calmed down until then. I am just hoping it doesnt flair until I can get to surgery. Not even sure I could get in for some more nerve blocks if needed. I just took an 8 week protected leave of absence from work due workplace retaliation and hostility on top of all the CV. I just cant risk going into a pain flair at this point. Trying to reduce the stress. My biggest fear is getting laid off without health insurance and not able to get the surgery. Im taking steps to protect myself from that occurring. Im sure others worried about this problem as well.

It’s hard enough dealing with ES as it is, without dealing with the virus too…so sorry that it’s delayed so far & that you’re juggling the timing of pain killers & potential surgery. I hope that the insurance works out & that now you can rest there won’t be another flare up. Thinking of you, hugs & prayers.

Hi Snapple,
Thinking of you. Its a hard time for sure. Hang in there. :revolving_hearts:
BG

Thanks!!! :smiling_face_with_three_hearts: