Looking for investigatory surgery in the UK - Any recommendations?

Hi all,

I stopped posting on here a number of months ago after having another scan of my throat and being unsuccessful in getting any answers. I needed to just try and ignore the symptoms and try to live. Anyway i’m now back searching for answers (not sure if it’s eagles syndrome that I actually have).

I’m wondering if there are any ENT surgeons out there that might do some sort of investigatory surgery. At this point I can’t see any other way of finding a solution. I’ve had Throat/neck MRI, CT scan, Videofluoroscopy, all of which apparently show do abnormalities.

Does anyone know of any surgeons in the UK that may be willing to do something like this? I’m willing to borrow the money to pay privately if I have to.

Hi Callmestar1,

I’m so sorry for all the tests you’ve done & yet received no diagnosis.

Have you been to see Mr. Axon?

Here’s the link to our doctors list which includes the UK doctors:

Certainly Mr Axon is the most experienced UK doctor- I can’t remember if you saw him? But waiting list are very long, he does do private work through Spire Health. We don’t know much about him, but there’s a Dr Jonathan Hughes in London, here’s a link to a website with details https://www.topdoctors.co.uk/medical-articles/differential-diagnosis-eagle-syndrome I know he’s seen a member, but can’t remember the outcome I’m afraid.
I’m so sorry that you’ve had to keep searching for the answers…I hope that you can get some help.

Hi Callmestar, we have used MSK neurology to have a second opinion on our scans, suggested by another member on this group, he is very thorough, and seems to find things that have been previously remarked as ’ normal’ - you download all your scans compress them, and book an online appointment( not expensive) hope that might help

2 Likes

Hi all, not posted her in a while but I am still living with the ongoing throat problem and am at my wit’s end again. Is there any surgeon out there that would operate to try and find out what’s going on? Anyone aware of someone that would do this?
I don’t think I have Eagles syndrome although I have similar symptoms. Mine is more a limited movement / restriction of the throat cartilages when swallowing.
If anyone know of a surgeon that would be willing to speak with me and investigate via surgery after nothing being seen on scans, please let me know.

Hi Callmestar1,

Did you have someone knowledgeable about ES look at your scans? Sometimes the radiologists who review the scans & write the reports don’t exactly know what they’re looking for & so can do a write up that indicates all is well when it’s not.

Another option is that you have Hyoid Bone Syndrome & not ES. That happens when the greater horns of the hyoid bone grow too long. This can cause symptoms similar to ES, but presumably, the elongated hyoid horns could press on neck cartilage & cause the problems you feel. If your CT scan was done well, your hyoid should be present in the scan as well as your styloids. That’s just something else to consider. I’m sorry, I’m in the US & do know of a couple doctors here who would look at that for you, but don’t know about UK.

Here’s a link w/ a good image of a hyoid bone: https://cdn.britannica.com/55/54755-050-98C77F53/Human-hyoid-bone.jpg

My Hyoid bone is normal size and shape and unfortunately you can only see the ends of my styloids but that look of normal length.

I don’t personally think it’s eagles but some other obscure throat cartilage problem which is making diagnosis or treatment near impossible. I’ve had CT, Videofluroscopy and MRI and they are all garage, awful diagnostic tools in regard to this kind of thing. I literally want someone to cut my neck open while I’m away and find out whats going on in there as I guide them. That’s how much I need this sorted.

I am so sorry for what you’re going through, @Callmestar1! I can imagine how frustrated you are & how desperate you feel for answers. Just the “not knowing what the problem is” part of this is very aggravating. Will surgeons there do exploratory surgery for problems like yours? I expect not & I think that would be the same in the US. If there isn’t something that can be seen, they won’t go digging to find the “invisible” problems. I will pray for you to find an answer & a solution. Please don’t give up looking for those things. :hugs:

So sorry that you’re still having problems & no nearer finding the solution. Are you able to pay privately at all? I guess maybe someone might be more willing to help if you do that, although I guess it’s a risk to them as a surgeon because of the risks to you…Dr Jonathan Hughes in London maybe? I’m sorry, I can’t remember who you’ve seen? He’s on our list.
Thinking of you & sending you a hug :hugs:

I’ve not seen Dr Hughes. I did have some communication with his secretary previously but never went through with booking an appointment due to feeling it was hopeless as I’ve seen about 10 Ent’s at this point and none have had any idea what’s going on or were able to help in any way, even after CT, Mri, Videofluroscopy and endoscopy.
Do you know how much he charges? I suppose I don’t have much to lose in trying him.

No I don’t know, I’m sorry, I think usually it’s about £300 to see other consultants privately…

I’ve managed to borrow some money from family for a consult and am considering booking in with Mr Axon. Do you guys think this would be a good decision?
I really need someone that would be willing to explore surgically as I’m getting nowhere with scans. I also do not think my condition is eagles syndrome but more some other strange throat problem. Would Mr Axon be a good choice?

I spoke with one of the secretaries and they recommended Mr Brian Fish rather than Mr Axon if it’s a throat issue?

I’ve not heard of anyone seeing Dr Fish so can’t offer any advice on seeing him…Mr Axon is a skull base surgeon, very knowledgeable about ES, but he does operate more on the styloids & removes them to skull base, I’m not sure that he removes calcified stylo-hyoid ligaments so I don’t know how helpful he would be if you think that it’s more of a throat issue. Although the whole chain of the styloid, stylo-hyoid ligament, hyoid process & hyoid bone are all joined, so any one part of that which is calcified/ inflamed can make the whole chain stiff & painful…
It’s a tough one, I wouldn’t want you to be wasting your money, but as I’ve not heard anything about Mr Fish I can’t really say. Are there any reviews online?

So is there literally no ENT surgeons that will investigate via surgery? I’m so so sick right now, it’s destroying my whole being. I need someone who will agree to look at this via surgery.

I’m so sorry for your symptoms & situation of not being sure who to see for help. I would still recommend seeing Mr. Axon &/or Mr. Fish depending on what Mr. Axon says. I don’t think any doctor will just go in & search around for a problem w/o some sort of indication via scan that something isn’t right. You may have nerve compression or irritation being caused by something so perhaps seeing a neurologist would be most helpful to you. Unfortunately, I’m in the US & can’t recommend anyone in the UK.

All I can do is pray that you will be able to get help soon, & I will do that. :hugs:

1 Like

I don’t know, I can understand that it’s the only thing you feel would help, but I guess from a surgeon’s point of view they would want to have an idea what they’re looking for? It’s so frustrating for you…praying for you too :hugs: :pray:

Who’s going to cut me open then?
Been through the ringer again. ENT at imperial college london. Another Videoflurosopy. Still state they can’t see any issue in my throat / swallow yet if you literally stand next to me or feel my neck you will feel/hear a huge cluck/crack every time I swallow. It’s utterly insane that these doctors who spend their careers working focused on the throat cannot work out what’s going on or offer anything to help.

My throat is literally aching at the end of the day from the constant catching and clicking in the throat as the mechanisms in there try to move normally while being restricted by whatever misalignment has taken place in there. I’ve had this shit for 7 or 8 years now. It’s destroyed me.

Sorry for your suffering! Maybe it’s not Eagle’s. But there’s other possibilities that could cause your symptoms like connective tissues disorders, Myositis or Systemic Sclerosis (rheumatology check-up?) or muscular dysfunction? Contractions? Tendinitis? Have you thought about MSK- Neurology for second opinion?

Yes, been through all of those. It’s none of them. And yes I doubt it’s eagles either. It’s something out of alignment in the throat, something catching in there, something preventing the normal upward loop of movement when swallowing. I have no doubt it could be corrected if whatever is causing the misalignment was adjusted. I need someone to operate and try and create more space in there but due to the swallow supposedly being safe, no one wants to do that currently.