Quantcast

Eagle Syndrome - Online Support Group

Back looking for options after inconclusive CT scan

Hi all,
I was posting here a few months ago while I was in the process of having a CT scan to hopefully find the cause of my symptoms. The scan was ‘normal’. I’ve now had, CT scan, MRI, Video fluroscopy/barium swallow, Ultrasound and the doctors are still unable to find a cause for my symptoms. Afer the CT scan I’d just given up hope.

I’m now back and looking for other options. I see one of the only ways forwards now as possibly some sort of exploratory surgery to find out whats causing my symptoms. I won’t bore you all with my list of symptoms again but they are listed in my original post if you are interested.

Does anybody know of any consultants in the UK that it would be worth speaking with regarding exploratory surgery. Ie cut open my throat to see what’s going on inside. I know it’s a long shot but I can’t see any other options and I’m at my wits end.

I don’t necessarily think it’s eagles syndrome specifically but something is restricting the movement of the cartilage in my throat as I swollow.

Hi, sorry to hear your story… Just to make sure, do you have a chance to render a 3d model from your ct scans and see by yourself what’s going on there? Because the “normal” scan according to the radiologist might also mean their lack of competence, as it had been in some of my cases.

Hi Callmestar1 -

I totally agree w/ vdm! It would be worth your time to have Mr. Axon review your CT scan. He is very familiar w/ ES & other issues w/ the throat. The information he gives you could be “golden”.

His contact information is in the doctors’ list (link below):

Getting a review of your scana is a good idea, although Mr Axon is the most experienced UK surgeon, he does like to do his own scans though, so they’re done from the head down rather than from the side as most are done. I think also as he’s a skull base surgeon, he would be less likely to be able to help if it’s more of a throat problem, I’m only guessing though. He does do private work through Spire Health if you did want to see him & can’t get an NHS referral.
Did you get your scans reviewed by a consultant? I can’t remember who you saw? Several members have seen Dr Jonathan Hughes on the doctors list otherwise. There are a few others on the list, I don’t know if seeing an ENT might be more helpful in your case?

1 Like