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Eagle Syndrome - Online Support Group

Throat issues, possible Eagle Syndrome, looking for advice

I was diagnosed with a panoramic x ray, which showed tge elongated bones, but the original consultant dodn’t believe in vascular ES, which I has symptoms of…so having a CT with contrast confirmed that for me & so was able to get surgery. But if yiu don’t have vascular symptoms then it’s your decision.

I’m not sure if I have vascular symptoms or not. I do have strange headaches / brain fog and some odd dizzyness now and then but I’ve had them for years and before the throat issues so I assume they are down to my anxiety and possible food intolerances but who knows, the throat issue could be linked.

I ended up having the scan without the contrast. I was undecided as to what I’d do until I arrived for the scan, I spoke to the member of staff who took me through to ask a couple of questions before the scan and I expressed my worries over having the contrast as I have some allergies intolerances. She didn’t seem to care and gave me no reassurance and simply looked disgusted and angry that I would even question what they were going to inject into my body. I could feel the hate radiating off her, she got another member of staff who also seemed equally baffled why I was concerned. In all likelyhood the contrast would have been fine but those overseeing my scan seemed utterly clueless about everything that was going on and I didn’t feel comfortable at all so I settled for the scan without contrast.

Seeing as ive had an mri previously and now the CT that can be make into a 3d image, I hope this can show what is causing my symptoms. Don’t know what I’ll do if they don’t find anything.

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I have had an allergic reaction to contrast. Anyone who is allergy prone is SMART to ask questions - good for you for not doing the contrast!

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Hope the CT does show what’s causing your symptoms, well done for standing your ground when you have legitimate concerns. I guess it’ll be the usual NHS weeks of waiting for the results?!

If vascular issues are a concern a sonogram on the neck is a good option.

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Thanks, yes it’s the usual NHS process. Hopefully it won’t take too long. I’ve sent an email to the secretary of my ENT consultant just to remind them of my symptoms and what to look for on the scan.

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Good job w/ follow-up! I don’t think we can be too pushy when dealing w/ ES. No one but us is feeling what we feel nor has any concept of the discomfort & fear those symptoms can cause.

Excited but at the same time slightly apprehensive about the scan results, so hoping they do find the cause of my symptoms.

Those of you in the UK, how long did it take to hear back about your CT scan?

I had to wait 6 weeks- 2 months, until I could get my next appt. with the consultant! No rush!!

Ah, yes that sounds about right for any follow up appointment with the NHS. I can wait that long to see the consultant, that’s ok, it’s just wanting to know if they have looked at the scan and found anything, which I’d like know sooner rather than later.

Debating calling my consultants secretary but I feel as though I’m always pestering her :joy:

It would be good to know, but I’m guessing they wouldn’t tell you over the phone, not matter how much you pester!

Hope everyone is well.

The wait goes on for my CT scan results, although I’m sure I will hear something soon. It’s been a month since the scan. No follow up appointment or anything in the post yet, I chased it up last week so hopefully it shouldn’t be too long now.

Very greatful for this forum, just knowing it’s here and reading through the posts gives me a bit of comfort while I wait for an update.

So sorry you have such a long wait for your results & learning what your next steps need to be. Hopefully your follow up call will soon be productive & you’ll have an appointment & some answers!

The joy of the NHS! Good idea to keep chasing, things do get lost in the system sometimes! Hope you hear soon, it’s so frustrating…

The pleasant squeaky wheel get the job done in my experience - keep on squeaking :stuck_out_tongue_winking_eye:

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I have some news of sorts, and it’s not what I was hoping to hear.
Somebody from the ENT/NHS booking office got hold of my consultant after I called in chasing up my scan results. They said the consultant is going to write me a letter and to their understanding there wouldn’t be a follow up appointment.

By the sounds of that, it’s going to the the consultant saying the scan is normal or if not then there is nothing that can be done about my symptoms.

I literally cannot live with this anymore. I am in despair now after hearing this. I don’t even think I have Eagles Syndrome to be honest, it’s probably some other unknown issue with the throat cartilage but I don’t know what to do anymore.

Since my last post I’ve had an email from my consultants secretary which contains the letter the consultant was going to send to me. In the main it said:

"I have reviewed your scans and can reassure you that they are essentially normal. There are certainly no concerning features.

I have however, arranged to review them together with one of our senior head and neck radiologists early next week after which I will arrange to see you in clinic so that I can go through them in detail with you."

Still not ideal but at least they are going to look at the scans again and discuss them with me. I hope together they can manage to see what is causing my symptoms.

Is the radiologist likely to see anything different than the consultant?

Callmestar1

I’m so glad you weren’t completely dismissed. You have a second chance here. Additionally, I wouldn’t throw in the towel after seeing this doctor. Try for a second opinion w/ a more experienced ES doctor like Mr. Axon if you can.

Radiologists are trained to expertly read the various types of scans offered today. Though many doctors also can read them, they often aren’t trained as thoroughly & can miss some of the more intricate details. I would still question the non-ES diagnosis because there are some doctors who are excessively conservative in making that diagnosis because of the rarity of it. They consider styloid length only & pay no attention to angle, thickness, & how twisted or pointed the styloid is. These other features of a styloid process can produce ES symptoms in the absence of extra length. Calcification of the stylohyoid ligament is also sometimes missed & that alone can cause ES symptoms even w/o the styloids being elongated.

Another diagnosis which causes symptoms very similar to ES is hyoid bone syndrome. It, too, is very difficult to diagnose. It would be a good idea for you to find research articles about ES (see the Newbies Guide here for links) & maybe even some research about hyoid bone syndrome to take with you to your appointment. Any research that lists your specific symptoms in the findings is extra worthy of taking w/ you.

I hope you feel encouraged after you see your doctor, though.

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Who did you see? I’m really sorry, but I can’t remember? There are a few other conditions which cause similar to ES, there’s info in the Newbies Guide section if you’re interested. You could also read up on some of the other research papers- it’s not just the length of the processes but the width & angle too, plus also the length of the cervical vertebral processes as the gap between those & the styloids can cause symptoms, as well as the hyoid bone too as Isaiah mentioned.
I hope that they’re taking plenty of care over reviewing your CT & can offer you some help when they see you. Let us know how you get on…keep strong, will be praying for you.

Isaiah and Jules, thank you for your replies, I really appreciate the support.

Jules, I don’t think I mentioned the consultant I’ve been seeing, that would be why you don’t remember :slight_smile:. It is Mr Charles Hall at Gloucestershire Hospitals NHS Trust. He is taking my concerns seriously it seems which is good, so I can’t complain, just a shame he can’t see anything on the scan at the moment.

I will have a read through the newbie guide section about other possible conditions. Although from years of reading I’ve never quite found anything that matches my symptoms specifically.

Isaiah, I have no idea if this ES yet, I’ve not seen my styloids etc. If it does look like ES on the scan and I have no luck with my current consultant I will contact Mr Axon.

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