Lots of questions!

This past year I was diagnosed with ES. I’m pretty sure I’ve had it for many years though. I’ve already had a tonsilectomy and uvulectomy for sleep apnea.
I’ve been trying to work through my symptoms to see if it’s something I can live with or not, but now I’m getting a little concerned that prolonging things will eventually lead to irreparable nerve damage or something.
I was wondering if anyone else deals with lightheadedness, and trouble concentrating.
I also have pressure behind the eye, and sinus issues when laying down flat on my back or stomach. The sinus issue is usually just on the right side.
If some of these things are related to Eagle’s Syndrome, does anyone know of any stories where surgery actually helped?
I live just outside of Albany NY and I noticed Dr Simons name pop up as a credible DR for ES. He’s about 2hrs away but I don’t mind the travel if I think it will help.

Twice I posted questions on here and twice I’ve received zero responses.
Is there any other groups out there that might have a little more activity.
Maybe a private FB group or something?

Hi Frank,

I also have right-sided sinus issues, as well as occasional lightheadedness and trouble concentrating. I think that ES can manifest in many ways because there are so many possible things for the styloid to irritate. I am waiting on a surgery date, but several members have reported successful surgeries. And don't wait! I was diagnosed seven years ago, and didn't realize that the symptoms would get worse... now I wish I had not waited.


Thanks for the response eAm. I’ll be setting up my appointments this week with the DR.
I’ve had so many symptoms that come and go that I just can’t tell what is ES related and what’s not.
Hopefully this Dr Simmons can solve some of these unanswered questions I have.
Please keep me updated on your progress. I’m very curious to how it all works out with you. You’ll be in my prayers.

Hi Frank,

I think that there's a lot of variation in symptoms as others have said as it can press on different nerves in different people. I get very lightheaded and dizzy sometimes- never know if it's ES or other neck problems. I have lots of earache and sometimes pain in sinuses. Surgery isn't so common in Uk, so can't help with that. Sorry you've not had responses to your questions- normally people respond very quickly and are very supportive,

good luck and God bless, jules

The pressure behind the eye is common, the others pop up on some patients. Do you have ear pain or throat pain or trouble swallowing at all. Those are the more common ES symptoms, but the fact that you are diagnosed is also a big thing.

Thanks for that info Emma, I’ve actually have had sore throats and ear pain quite a bit throughout the years. I kept thinking I was coming down with something and then it would go away. The back of my throat was always slightly swollen which is why I had to have my tonsills and uvula removed because they were causing sleep apnea. I sometimes wonder if that surgery could have been prevented if I had the ES surgery instead.
I’ve recently had to stop playing out and singing because my throat gets sore pretty quickly from singing.
I also have had swollen salivary glands for many years now too.
Thanks again for checking in Emma, I appreciate any info about ES that I can get.
God bless.

Thank you for your response.
Yes, I have also had many sinus headaches over the years. It sounds to me like these are also ES related too.
Do you ever consider traveling for the surgery? Or do you think its something you can live with at this point?

Hi Frank,

I think I would consider surgery if I had the pain that some others have; at the moment mine is bearable, although has got worse over the last couple of months. The consultant I see told me that he wouldn't recommend surgery unless someone was at the point of suicide because of pain etc!! I did say that it seems to be done routinely in US, but things are different in the UK! There have been some people who haven't been helped by surgery- check out Cambridge's recent discussions- so it has made me wary.

I think the more I've read stories on this site, the more things have 'clicked' (pardon the pun!) as you read symptoms others have had, and realise that you've had that for years, and that it's more than likely ES! The thing which worries me is that although I don't feel ready to risk an op yet, if I leave it until it gets bad enough for that, will there be nerve damage which wouldn't then get better?! A dilemma...


Jules, I think we struggle with the same dilemma. I’m hoping an appointment with this Dr Simmons will give me a little more resolve as to which direction I should go.
I’m hoping there’s an exray out there that will give me a better idea as to what type of nerve damage (if any) is going on.
Thanks again. It’s good to know I’m not alone on this strange ES journey.