I don’t have a lot of energy to post a full update, but wanted to let everyone know I survived.
@Elena also survived! We’ve been texting from our separate hospital rooms in the same hospital.
I will update fully later. 
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So pleased you’ve had surgery, praying for a good outcome 
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Thank you for the post, @slekeille. I’ve been thinking about you & @Elena & praying for you both during surgery & afterward. Looking forward to your update when you have the energy to write more. 
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Get well soon. So hard to get someone to operate. I can hardly eat without pain but I keep being fobbed off with more painkillers. Hope your recovery goes well x
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I’m sorry to hear that, @Haddo. Have you been able to see any of the doctors on our Doctors List for your country?
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Nobody prepared to take me on here. Tried Mr Currie at Ayrshire and Arran but he said now he is Medical Director he very rarely has time for surgery. Mr Shakeel in ENT has said a colleague of his has operated on this condition and said he would refer me, but heard no more, still pursuing that, in the hope that I will hear something soon. I am in Aberdeenshire.
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Hey, Haddo! I’m so very sorry to hear this. In case it makes you feel less alone - it sounds like you are having a very typical experience, as far as I am concerned, for someone with Eagle’s Syndrome. I along with everyone I have spoken to one-on-one has had to go through numerous leads in order to find someone to help. I personally desperately called major university hospitals at 3 in the morning requesting call-backs from doctors I was not under the care of, sought consults with doctors that eventually ghosted me or told me they could or would not help, spent countless hours driving and wasted hundreds of dollars on gas by the end of it all seeking opinions and relief that it felt would never befall me. At the same time, nobody was willing to help in any way, including with pain killers - they all just kept referring me to someone else. Oral surgeons referred me to dental surgeons (this was before I understood what ES was and what kind of specialist I needed), dental surgeons referred me to oncologists, oncologists to ENTs and ENTs to yet more ENTs that they believed might help.
Once I finally found a surgeon in my state willing to help, it took four months to get a consult. After the consult, it took another three months for surgery. That was on top of 2 years of uninterrupted symptoms and over 10 years of intermittent symptoms wrecking my quality of life.
Nobody should have to fight this hard to get the help they need. Nobody should have to wait this long for relief. Nobody should have to put up with this. However, at the very least, you appear to be in good company, here - you appear to be running into the same issues we all do, which are that Eagles Syndrome is rare, doctors to treat it are rarer and fighting tooth and nail for your healthcare is a requirement if you want help. Don’t give up.
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Great to hear, hoping for a quick and successful recovery
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AMEN, Sister!!
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Good for you! Keep after them via phone, email, personal drop-in at their office, until you get the referral!
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jusr want to thank everyone one the forum for understanding and suggestions. I look ok so people cant see what the problem is, especially when I try to hold it together at consultations, so they seem to judge that it isnt that bad. Its a form of torture with nobody willing to operate, we always assume someone can do something to help. I have seen Oral Max Consultants, Neurologist, ENT consultants, etc, being going round in circles for over a year, pinning hope on latest surgeon. My sympathy to all my fellow Eagle sufferers out there, its good to know others understand what we are all suffering. Good luck all worldwide
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