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Eagle Syndrome - Online Support Group

Curious questions

I’m wondering if anyone else is able to see a change in there outward physical feature of their jaw/neckline? People can visibly see a difference on the left side of my neck and jawline. it has spread out my jawline.

Hi Hirocooper,
My glands in my neck just under my jaw were very swollen when I had ES, so from that standpoint, there were changes in the shape of my neck. I have had a little change in my face due to some nerve damage that happened during my first ES surgery. The jaw muscles on my right side aren’t as pronounced as the ones on my left, so my face is a little asymmetrical now. Apparently no one can see this but me, but I guess we’re each our own worst critic when it comes to our appearances. :face_with_monocle: :yum:

I’ve forgotten, have you had surgery yet?

Thank you for the info. I haven’t had surgery. The thought of it terrifies me. Some say intraoral is the better method but others say the external approach is best. I don’t trust my Kaiser doctor. I wasn’t comfortable with his lack of knowledge of ES so I’m not about to let him cut near critical nerves and arteries. I don’t know what will do. I want to get rid of the discomfort but I can’t stop working and then there is my age. I will turn 60 this year. The older I get the harder the recovery.

Hirocooper,

I was 58 when I had my surgeries. Age certainly plays a role in recovery speed but not totally. Some of what goes on during surgery will determine that, too. If your surgery is straight forward, obviously, recovery is quicker. If there are nerves or vascular tissues that need to be worked around then recovery can take more time. Generally, people can go back to work 2 weeks after surgery & some after just 1 week. Depends on what type of a job you have.

I had forgotten you have Kaiser. That does make your situation more challenging. Does Kaiser have a skull-based surgeon working for them? Some ENTs are skull-based surgeons. They do a lot of surgeries in the area of the neck where the styloids are & would more likely be able to do a good ES surgery even if they hadn’t done any ES surgeries before.

As you have probably read, I’m a strong advocate for the external approach because of the better access to the styloid &/or calcified ES ligament for complete removal of both. Additionally the external approach allows nerves & vascular tissues to be monitored which the intraoral approach does not. Intraoral surgery only allows for the styloid to be shortened not removed & allows very limited access to the s-h ligament. Thus if a calcified ligament is your problem, intraoral surgery would do little to help you.

Isaiah Thank you for sharing your experiences with me. It’s giving me great info. The Kaiser doctor discouraged me by telling me that my only choice was intraoral and that it would be the worst pain I’d ever had in my life. I want to look for another doctor.

Hirocooper,

The doctor you saw doesn’t sound like he behaved very professionally. The pain I had from ES surgery was far from the worst pain I’ve ever had. Childbirth was worse, going over the handlebars on my bike (between ES surgeries) & landing on my face was worse, & I’m sure there have been other things in my life that rivaled those.

The post op part of ES surgery is not so horrible. For me, keeping w/ the Rx pain med schedule, prednisone, ice, & keeping my head elevated even while sleeping made it reasonably tolerable. It’s not pain-free by any means, & the first week is the most challenging, but by the start of week 2 things begin improving. I think that could be said of almost any surgery though. Surgery made a huge difference for me as far as getting rid of my ES symptoms goes.

I hope you’re able to find someone you feel is competent to help you, Hirocooper. I’m sorry that you have an insurance plan that is inflexible as far as letting you go to out of network doctors goes.

My problem is on my right side and when I lay down on that side I cannot breathe out of that nostril. Has anyone experienced that?

Yes, I usually have exactly the same