Symptoms on both sides!

Hi Everyone,
So, it’s been 2 months since my diagnosis of left sided eagle syndrome and as I wait for my op I am devastated to start developing symptoms on the right side as well. I know this is not unheard of but I really had hoped that I might find some comfort after my first op and I now have to come to terms with my journey being much longer. I am hoping that some of you might be able to say that you got at least SOME relief after one side was done? I know I may not get my life back until after the now inevitable second op, but did any of you feel that you were able to discern some success after the first side was done? Some nights I find it hard to come to terms with this new development. x mouse

So sorry that you’re getting symptoms both sides now…although many doctors think that only one side is commonly affected, it’s been our experience on here that many people do have bilateral ES.
Good news & bad news :grimacing: Usually people have the worst side done first, which generally does make a difference to symptoms. Personally, it had very few symptoms on my ‘better’ side, & vascular ES; after the first surgery the vascular symptoms improved alot & the pain & tingling I had on my worst side definitely improved. But…quite often members have noticed that the better side ramps up & is felt more after the first side goes! Whether that’s because the whole styloid/ stylo-hyoid ligament/ hyoid bone chain shifts after one side is free, we don’t know, or whether the worst side masks the other…but you should be prepared for that to possibly happen. I was lucky & my second side did flare, but never became as bad as the second side.
A good doctor will leave it at least 3 months for the first side to heal properly before doing the second surgery, so it will be a little while before you feel the full results!

Hi Jules. Thank you for your message. I think I kind of expected you to say that. Maybe I’ll be lucky and get some relief at least. Obviously Eagles syndrome is rare, so bilateral must be even rarer - just can’t quite believe it’s happening. Ho Hum… x

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Hi there! I don’t have any advice regarding surgery because I still don’t have one scheduled yet… But I’ve had right sided symptoms for a long time now and in the past couple weeks I’ve started having symptoms on my left side as well. I feel your pain.

Hi one_day,
I’m sorry you’re in the same situation, but it’s mildly comforting to know that I’m not the only one! This is not a forum I ever would have expected to be posting on - but I’m so glad it exists. Hope you get a surgery date…

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Thank you. When is your first surgery?

Next Thursday! :scream:

Yay! I’m sure you are nervous but it’s nice to know relief is in sight. I keep thinking about how I figured this out on my own that I had this. I kept going to the doctor and trying everything they told me to. They had me believing I was crazy but I knew something was wrong. I shudder to think about how long this could go on had I not kept searching for answers. Then when I told my first ENT what I got diagnosed with he said yeah I see it on both sides. Go figure…and now all the communications between us (me literally begging for help) have been removed from their system.

Anyway I wish you luck with your surgery and please keep us posted as to how your recovery goes!

Thank you, I shall. Hopefully I can give lots of positive feedback in a couple of weeks!

Not long then! Lots of info about what to expect after surgery on here if you’ve not already read up on it, just search for that!
Will be praying for you & your surgery :pray:

Thank you x

Hi Everyone. I had my surgery yesterday! External, left side, Mr Axon (UK). The surgery only took 1.5hrs, and I was in overnight because of the drain he puts in. The good news is that there’s hardly any pain, and very little swelling; I still feel a bit rubbish from the anaesthetic but that won’t last. However… I was desperate to wake up & discover that all my symptoms had gone but they’re all still there! I still have discomfort/pain (almost like a stringy foreign body) at the base of my tongue; (in fact all of my tongue symptoms are exactly the same) and pain under my tongue when I yawn & stick my tongue out. Feeling very disappointed & shocked. Am I expecting too much too soon - has anyone else felt this way?

Glad that you’ve been able to get your surgery done! It is very early days- not everyone wakes up completely healed! The nerves will have been irritated for a while by the styloids, & then irritated from surgery, so they can take a few months to heal. I know that Mr Axon uses a drip to reduce swelling, but there will still be some internally from surgery, so this will affect the nerves too. You might find that you feel a bit Hopefully you’ll see gradual improvements over the next few weeks & will then get the benefits of surgery…make sure that you take things easy & don’t over do it! Can you eat okay?
God bless, & take care :bouquet: :hugs:

Hi Jules. Thank you for your reply. As always you are the voice of calm. I’m very lucky as I had no complications with my surgery & have no problems with eating at all. I shall try to be patient…

A good excuse for a rest & being taken care of!