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Eagle Syndrome - Online Support Group

Trying to get diagnosed. Advice please!


#1

Hi all,
I’m a fairly new forum member and this is my first post. Firstly I just wanted to say how helpful I’ve found the Newbies Guide section.

Here’s my story and hopefully the kind people on here can offer me advice (I’m located in the UK btw).

I’ve been having a frustrating few months. My symptoms (feeling as if there is a lump in throat and often sharp pain in that area on right hand side, persistent ear and jaw pain on same side, all gets much worse when I turn my head to the right) started about 6 months ago and have been continuous. Sometimes the pain in my ear and jaw is so bad! I saw 4 GPs at my GP surgery before one of them eventually referred me to an ENT consultant at the hospital. It was whilst I was waiting for my initial appointment that I stumbled across Eagle Syndrome and this forum. Reading some of the posts from people on here describing their symptoms, it was as if I had written those posts myself, the symptoms were exactly the same! I’m convinced I have it, and since finding out about Eagles, I have felt round the back of my right tonsil and can feel something hard, almost like a hard piece of twig inside my throat! It’s not there on the left.

Anyway, at the ENT hospital appointment (in November) he scoped my throat and of course saw nothing. He told me there was nothing to worry about and that it was the muscles in my neck contracting and it would eventually go away. When I asked about Eagle Syndrome he dismissed it (to be honest I’m not sure he knew what it was). He didn’t offer me a CT scan. He just told me to stop being so anxious and it will go. Well it hasn’t.

Today I went back to my GP taking a load of information about Eagles to show him and asking to be referred elsewhere and gave him some names if UK based consultants from this forum. He was quite cross with me for “Googling my symptoms” and told me not to trust online forums. He said he had “never heard of this Syndrome” and that I need to see an Osteopath for my neck pain. I almost cried in the appointment but fortunately made it to the car park before I burst into tears.

I don’t really know what to do next. Perhaps I haven’t got Eagles and perhaps it will all just go away. But I’m so frustrated and in pain that I want to do something about it. I wonder whether I should save up some money and see a consultant (one of the UK ones listed on this forum) privately as I don’t think I have a chance in getting referred by my GP on the NHS. Does anyone on here UK based know whether a consultant will see you privately without a referral letter?

Thanks all (sorry for such a long post!).

Clarissa


#2

Goodness Clarissa, you’ve not been treated well. I had to start at square one in November after the same run around. “You dont have it, surgery won’t work”. One day post op, my symptoms on that side are completely gone. Keep pursuing until you find someone to listen to you! Your poor thing. So many of us have been there at the point of confirming diagnosis. It’s crucial to get the right info - if you have an ES diagnosis, then you can pursue treatment! :heart::rainbow:


#3

HI Clarissa!

First off, never worry about long posts. That’s why we’re here! Secondly, I’m soooo sorry for the way you’ve been treated by your GP & the other doctor you’ve seen especially when you did your homework to justify why you wanted to see a different specialist. I applaud you for doing that work even if it didn’t pay off initially. Sadly, many people on this forum have received the same treatment from doctors who are supposed to be looking out for our welfare & not belittling us when we try to inform ourselves about our health regardless of where the information comes from.

Mr. Axon (Cambridge area) is likely the most experienced ES surgeon in England at the moment. Since I’m in the US I don’t know how the NHS system works as far as needing a referral if you’re paying privately. Jules will hopefully be able to answer that as she is also in the UK.

I encourage you to keep your chin up & persevere toward a diagnosis. Your symptoms are definitely ones seen w/ ES, but there are other ailments that can have similar symptoms. A CT scan would certainly help rule out or confirm ES. I hope you’re able to find a doctor who’s at least willing to refer you for a diagnostic CT scan.

I’ll be praying for you to find the right doctor to get you headed toward a diagnosis.


#4

I’m so sorry that you were brushed off like this, it’s so frustrating! I know there’s lots of sceptism about Dr Google with doctors, but if you have symptoms of a rare condition then it could be right. Lots of us here have been misdiagnosed, dismissed or given wrong info by doctors so we do understand.
If you google about getting a second opinion in the nhs there’s info about it- it looks like you’re not legally entitled to it, but GPs should listen to you. You could see a different GP at your practice if you think one might be slightly sympathetic, & it might be worth considering speaking to the practice manager about making a complaint- maybe that might shake them enough to take you seriously?
I don’t know if you can self refer to a private consultant; I think you may need a referral froma GP or you could maybe try a practice nurse, but if you’re prepared to pay for it then I can’t imagine they would refuse. You can pay for a consultation & then go to the nhs for treatment if you get a diagnosis. Both Mr Axon & Mr Corbridge are with Spire medical group, I don’t know about any of the other UK doctors on the list.
I don’t know how helpful this is, I wish I could help you more! It’s so hard to be assertive with doctors, have you got a friend or relative who could go with you? I hope that you get somewhere, & thinking of you, & let us know how you get on…


#5

Thanks all for you replies and advice! I shall keep persisting. I should feel lucky that I’ve only had symptoms for about 6 months or so, I’ve read the posts on here from people who have been suffering for years and years which must be terrible.

Jules thank you, I shall try another GP at my practice. Thanks for the extra info about Mr Axon and Mr Corbridge too.

I’ll let you all know how I get on in the coming weeks.

Thanks again!


#6

Hi Clarissa, So sorry to hear what you are going through. I was also in the same boat but getting some answers now. I asked my GP to refer me to Mr Axon in Cambridge and she did so on the NHS. You are entitled to this but you need to go in there and say that you would like to be refered to this Doctor. You have to be clear about what you want to happen and explain your symptoms.

I really hope you get some answers soon as i know how frustrating it can be. I have had symptons 18 years now.

Hope it goes well.


#7

Not sure if you’ve seen Rogerinlondon’s discussion, but he’s just had surgery with a Mr Jonathan Hughes, an ENT in London & Bucks. That would be nearer for you than Mr Axon, here’s the link to it:Recovering from op for calcified stylohyoid ligament
London & Buckinghamshire - Mr Jonathan Hughes


#8

And this discussion:


#9

Hi Clarissa,

sorry to hear what a frustrating experience you’ve had with the doctors. On a positive note, it’s great that you’ve found this forum and identified ES as a possible cause so quickly. As you’ll have seen, a lot of us took years to get to that point.
My GP hadn’t heard of Eagle Syndrome either; interestingly none of the Max Fac or ENT consultants I saw previously ever mentioned it as a possibility either.
I’ve always had a lot of sympathy for doctors up against patients who had self-diagnosed themselves with unusual conditions through the internet - but then I found myself needing to do exactly that, and saw the issue from the other perspective. I guess the fact is doctors can’t have encyclopedic knowledge of every single medical condition, whilst we the patients know our symptoms best, and can put the time in to research what the root cause might be.
I’m fortunate enough to have a great GP who was open-minded enough to look into what ES was, and to refer me. But as others have said, we can make it easy for the GPs by first identifying someone who’s familiar with ES who we want to see, and then asking for a referral to them specifically. I certainly recommend Mr Hughes if his locations are convenient for you.
Best of luck.

Roger