Possible eagle syndrome or not?

Hello I stumbled across this forum while searching my symptoms, I am hoping someone could help from here as I’m at a total loss. I’m from the U.K.

So February 2020 I come down with a nasty chest infection and was poorly for a couple weeks, I had a sore throat while ill (nothing to be concerned over right) but it never went, my throat is tender to swallow only on the left, I have a feeling as if something is lodged in my throat to the left and also have a odd feeling to the very back left of my tongue. I’ve had troubles ever since with a blocked left ear and a constant earache and also get a tickle constantly, somtimes the pain is shooting up to my ear from my throat (the pain in my throat is like a ache/ burny/tingling feeling that can be stabbing at times).
I’ve seen 4 different ent drs who cannot find absolutely nothing wrong with me, I’ve had 4 Nasoendoscopy procedures, I’ve also been put to sleep and had a camera down (sorry I can’t think of the name) a mri, 2 ultrasounds, a barium swallow and still nothing.
The last ent 2 doctors I seen were actually really rude and told me that this was in my head and it was a form of anxiety (it really isn’t I know the pain is real) currently I’m stuck, I have nowhere to turn. The gp has put me on 50mg of Amitriptyline per evening and I take 30mg of Co-Codamol As and when I need to. But this isn’t enough. My earache is constant and the throat is absolutely horrible I get like flare ups every now and then where it gets really bad and I end up in a anxiety tumble where I just cry because I don’t know what else to do.

Is there anyway this could be connected to eagle syndrome? If so what do I say to the consultant? Atm I’m back on a waiting list for a phone call follow up from when I had the barium swallow done but I have a feeling I’ll be waiting a long time for that.

I’m so exhausted I’m only 31 I have 2 children 5 &3 and the last 18m have been absolutely awful.

Sorry if I’m rambling I just feel like this is my last hope in to finding what is wrong with me.
Thanks x

The only way to know if it is Eagle Syndrome is to have a ct of neck without contrast and ask them to measure the styliods in both sides. 2.5 cm is within normal range and mine are 3.5. I do not fit the normal ES symptoms. My symptoms included sever head and tooth pain or where my teeth would be if I did not have healthy teeth removed. I was told my pain came from emotional issues if a divorce 3 years prior to pain ….doctors will not look for the answers unless you persist….and since this is so rare many doctors do not have experience. You need to find a doctor sho does this type of surgery to get a diagnosis.

1 Like

Hi Char, don’t lose hope! I’m so sorry you’re going through this and with two little ones! Ugh. Crying is good therapy but don’t forget you are strong and you will figure this out! It sounds like it could be Eagles- I agree with Ann, get your neck scanned and look for those pesky styloids squashing things. It’s so hard to advocate for yourself when you feel so awful and especially when some doctors are mean but you know your body and you know there is something wrong. Try not to let those rude doctors defeat you. You can do this! Keep researching, keep fighting, you will get there. :two_hearts:

1 Like

So sorry that you’re struggling with this, it must be really hard with little ones too…
As the others have said, the best way to get diagnosed is with a CT of the head & neck. I’m not sure if your GP can refer you for a CT or if you’ll have to try & get the consultant to- unfortunately as ES is quite rare, many doctors are unaware of it, but your symptoms do fit so it would be worth getting one done to rule it in or out. There’s a section titled 'Common symptoms and possible explanations in the Newbies Guide Section so you can see the symptoms you mention are normal for ES. We suggest that maybe you print off one of the research papers which explains the symptoms of ES- there’s links in the Newbies Guide Section- to show the doctor, who hopefully will take it seriously. The vagus nerve can also be compressed by the styloids, which can cause anxiety, although obvs having an undiagnosed condition can do that too!
It might be worth trying a different nerve pain medication if you don’t think the amitriptyline’s helping- there are others, like Gabapentin, or Carbamazepine, you could try instead, although they can take a few weeks to build up, so if you’ve not been on Amitriptyline very long it would be worth sticking with.
Other things which can help are either heat or ice on your neck, sleeping partly upright, muscle relaxant medication like Baclofen. Some US members have been able to get lidocaine patches or topical cream which has helped, but I’m not sure if we can get those in the UK. Steroid and lidocaine injections can also help into the tonsillar area- some doctors do this as a diagnostic tool too, but they don’t always help. This would have to be done by an ENT though.
Mr Axon at Addenbrooks in Cambridge is really experienced with ES, but he does have a long waiting time. It’s a way for you to travel too! Dr Jonathan Hughes in London has treated some members, so might be worth seeing if you could get a referral, the doctor we know of in Reading seems to have been reluctant to treat people recently, but might be worth a try. There’s also a doctor who at least one member has seen in Bristol so wouldn’t be too far, he might be worth a try too? Here’s a link to the Doctors List anyway:
Doctors Familiar With ES Countries Outside US Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope the tips can help you, & knowing that you’re not alone…sending you a hug :hugs:

1 Like

Hi Char1107,

This is a very hard time for you, & I’m sorry it’s gone on so long especially with little ones to care for. You have found the right place for support while you search for answers. I suspect you will find once you’ve gotten your scan that you do have ES as your symptoms are fairly “textbook”.

You have gotten great advice from ann, Lulu, & Jules. I’m glad Jules is in the UK & could give you guidance there. I hope you’re able to get into for that CT scan before long so you have an answer about ES or something else.

We are all here for you and rambling is fine!

:hugs:

Thankyou all for your kind words i really didn’t expect this much response.
Ok so the best thing for me to do is request ct scan from the consultant, I will try and get through to him it’s been such a carry on because they are just fobbing me off so it’s so hard to get them to listen.
I cannot afford to go private so what If I ask for a ct and the ent dr doesn’t know about eagles syndrome? Will he be able to look for it if he’s unfamiliar with it?

I’m just desperate at the moment I have honestly spent the best part of 18m thinking I’m dying of cancer. As crazy as that sounds.
Thanks all x

You could ask that it’s evaluated for ES, & ask if you could have a copy of the scan images & the report if they’ll let you. Then at least you can get it looked at somewhere else if the consultant doesn’t agree, it should be assessed by the radiologist too. Otherwise try to get an appt with one of the doctors on our list. If you think you might get fobbed off without a CT, I’d get one or 2 of the research papers ready which show the common symptoms & that a CT is the best way to get diagnosed, maybe you can send that to their secretary if needed! Even if the ENT isn’t familiar with ES, then they should be able to research it, but who knows! I hope that you can convince them to send you for a CT…
Plenty of us on here have imagined all sorts with our symptoms, so don’t feel bad about that!

Cancer is the number one worry many of our members have when their symptoms start & then other symptoms add on. You are not alone, Char1107. Your symptoms are common to ES though so it’s most likely that’s what you’re facing & it normally isn’t life threatening like cancer. I’ll be praying for you to get your CT scan order soon & some answers as well. :heart: :pray: