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Eagle Syndrome - Online Support Group

Waiting for UK referral

Hi all,
I'm new to the site and pretty sure I have ES. I'm a 32yr old male and I've been through the usual motions for several months and finally persuaded my ENT to get a 3D CT scan which shows both styloids to be 49mm in length, I have all the standard symptoms and have been referred to Guys St Thomas in London UK which is a couple of hours from where I live. I can't see any reference to the surgeon I'm seeing having done ES surgeries before but will obviously discuss this once I get my appointment.

So far I'm only really getting pain on one side but I get the odd pain on the other side now and then. I expect it will likely go the same way at some point so hopefully they will do both sides long term.

From what I've read the person I'm going to see is a skull base surgeon, I know many people have spoken highly of Mr Rogan Corbridge so I will certainly mention him if my surgeon hasn't performed any ES procedures before. If anyone knows of any other good UK surgeons I'd be very grateful if they could recommend anyone, I've checked the spreadsheet on the forum but this seems to be mostly US based although a very good idea.

MR. Patrick axon http://www.spirehealthcare.com/cambridge/our-facilities-treatments-and-consultants/our-consultants/mr-patrick-axon/ saw him first privately ! he will do my surgery on right side through NHS at Addenbrooke's hospital in Cambridge his used to perform that kind of surgery but for other reasons I'm having my right styloid removed externally with an incision behind the mastoid process

Hi, and welcome to the site!

I'm in the UK too, and was diagnosed about a year ago, having had pain for a year or more before that. You were lucky to get a scan like that done!!

Rogan Corbridge does seem to be recommended, as does Mr Axon at Addenbrooks- I've been referred to him and I'm waiting for an appt. A skull base surgeon is what you need though. I think we have to resign ourselves to travelling!

Keep us posted as to how you get on in London!

here is another one >>> Mr Michael Patrick Rothera . http://www.spirehealthcare.com/manchester/our-facilities-treatments-and-consultants/our-consultants/mr-michael-patrick-rothera/

Brilliant, thank so much for the replies. I've noticed most of the UK surgeons seem to perform the procedure using the external approach, has anyone had experience of surgeons in the UK doing this intraorally? I'm guessing this technique is possibly newer although doesn't provide as much visibility I assume.

I'm hoping that I get my appointment at Guys soon so at least I can find out if they want to refer me onto another surgeon who has done the procedure before. Regarding the scan, I work at a hospital so managed to hassle a few colleagues in radiology for advice which was really helpful during my consultations with my local ENT surgeon :)

Heidi has done some research on intra-oral vs external approaches and posted on eaglewon'tbeatme's discussion, but I don't know if external is always done UK (think yourself lucky if you can get an op at all in the UK!!) :

heidemt said:

I've been looking at Eagles articles and just saw this::

National Journal of Otorhinolaryngology and Head & Neck Surgery, Vol. 1(10) No. 3, December 2013

Conclusion
External trans-cervical approach is better procedure than
intra-oral approach in excising the elongated styloid process
because of better exposure, less operative time, less blood
loss, cost effective, can be operated in high risk patients and
greater length of styloid process can be removed.

Thanks Jules that’s good to know, really hope they can do something in the UK :frowning:

Hi I’m in Ayrshire West coast of Scotland I had intra oral surgery August 2013 on my right side consultant said at the time he took 32 mm approx away and symptoms would ease as of today still have same symptoms so much so go back Jan 2015

Hi Rhona, sorry to hear you didn’t get any relief from your symptoms, hope all goes well for you in 2015. From the CT mine are at 49mm both sides but I’m only getting significant pain on my left although the right does flare up now and then, did you have your surgery in Scotland or did you have to travel very far?

Hi, I too am UK based with bilateral ES. I have been seeing a Maxillo consultant who by his own admission has very limited experience of ES (1 case in 8yrs). He has referred me to ENT to check my tonsils?! I’m hoping the ENT consultant may be able to also take on the ES & if he can’t I shall be asking for GP to refer me to Mr Rogan Corbridge. Sorry i can’t put forward any other names & good luck for your ENT appointment

Michelle

Just thought I’d post an update. I have been to see the surgeon in London who said he could do the surgery but hasn’t treated anyone with this condition before and seemed concerned about the chances of me developing first-bite syndrome after the surgery which he said can be very painful and last up to a year or so.



He has now suggested I have an anaesthetic injection to see if this can confirm the source of the pain, after this he recommended trying a steroid injection, then if none of these work he would consider surgery.



Im glad he isn’t rushing into surgery and I’m willing to try everything I can, fortunately he has also written to Rogan Corbridge who is going to see me in March, guess I’m just trying to cover all bases.

That's good news! I'm glad you can get a second opinion too. I've never been offered injections, but have read of others having this to check if it's ES. I think the steroid injections can help, but only temporary- maybe someone with more experience can comment?

Good luck, and thanks for keeping us posted!

Thanks Jules, I'll let everyone know how I get on. I guess the the next thing I'm going to have to think about is who does the surgery if I'm deemed a suitable candidate. On one hand Mr Corbridge has done the procedure before but on the other hand the consultant in London is a highly regarded skull base surgeon who my local ENT consultant said, and I quote "if it was me I'd want him to do it". I know the surgeon in London didnt seem phased by the prospect of doing the surgery as he said he works in that area all the time removing tumours, something to think about I suppose.

Ok, so I went for the injection, they basically said "we've never done this before, we don't know what the side effects will be, do you want to go ahead?" They took some more x-rays, had a look with the ultrasound scanner and then seemed confused when I told them the pain was coming from the bony lump behind my tonsil, they just said they didnt think that was the styloid process. At this point I told them I wasnt confident to go ahead and would speak with the consultant again. Interestingly they wanted to do an external injection behind my ear, I'm going to raise this at my next appointment. The other problem is travel, I had been on a long journey to London on my own and if I'd had adverse side effects I would likely have had to brave the tube/coach in rush hour back to Dorset, not fun. I've got another appointment later this month so I'll post update then.

That sounds a right cock-up! I think you made the right decision! And what a pain with a long journey like that for nothing. Hope your next appt. goes better.

Just thought I would post an update as its been a while since I last wrote anything on here. I've since had two separate rounds of steroid injections, each has lasted for about 10 weeks at which point the pain has started to return. As there are only a limited number of times its recommended to have these injections I have decided to look into the surgical approach.

I have been to see Rogan Corbridge in Reading and he said I am a good candidate for surgery. When I asked him about the procedure he said that on the day, he would decide if he wanted to take the internal or external approach, part of me would like to ask him to do it externally as I've heard people have more successful outcomes but at the same time I don't want to tell him how to do his job. I feel like I could be getting close to having the procedure so am feeling a little anxious.

It's good that you had some interim pain relief from the steroid injections- did you have them in London in the end or with Mr Corbridge?

Different surgeons have different preferences for operating- you've obviously read up on it, so can make an informed decision. I think how much he can take off is the most important thing to ask, and how confident he is with each method. It would be interesting to hear his reasons for why he chooses each method. It looks like external gives the opportunity to take off more of the styloid, so it's not unreasonable to ask, plus there's a longer recovery time for your throat if he does intra-oral. There's more of a trend now to involve patients in the decisions for their treatment with the NHS, so you could talk about your preferences too- if he's done both types of surgeries he might go with your preference. Hopefully he will respect your views if you can show that you're informed and you have valid concerns. Mr Patrick Axon at Addenbrooks is a skull base surgeon- he only does external surgery and takes the styloid off right at the base of the skull.

Hope that all goes well- have you got a definite date yet?

Hi Jules, good to hear from you again, I was hoping you would reply. The injections were done at Guys Hospital in London, they tried a couple of methods, first time directly into the ligament and the other was several injections tracking down, both gave the same relief as far the as the constant aching pain is concerned, other than laying on one side, I almost forgot I had the problem until it crept back the other week and then I looked at my calendar and it was about 10 weeks since the last injection which is when about the time it ran out last time.

I will certainly ask him in more detail about each approach and his reasons for doing them. When I spoke to the consultant in London he said he would do the procedure but would use the external method, he's a skull base surgeon but has never done this specific procedure before, although he said he operates in that area all the time but mainly to remove tumors. I've had no definite date yet as Mr Corbridge wanted me to wait until the pain came back to ensure the steroid had worked and I'm confident I'm not at that point.

Am I right in saying you've now had the surgery? If so, how are you feeling and how long ago was it?

Thanks again for your advice, I'm very grateful.

I can't help but wonder if it might be worth trying to get an appointment with Mr Axon as he sounds very good. When I saw Mr Corbridge he seemed extremely rushed and I didn't get the best feeling, could have been a bad day I guess, but I'd be keen to know what Mr Axon is like as he seems to come very highly recommended.

Now there's a dilemma! If the skull-based surgeon was happy to take the whole thing off at the skull base, I think I might be tempted to go for it with him then. They are the ones who as you say work in that area all the time. At least you'd know how he was going to operate, if Mr Corbridge isn't sure- I presume it would be external surgery at London? I suppose the journey is worse too- would they keep you in for a night?