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Eagle Syndrome - Online Support Group

Help ! UK based Eagle Expert Consultant, Surgeon or centre of excellence Help me Please


#1

Hi
WE NEED AN EXPERT T ASSESS - HELP PLEASE x
I am the mother of my daughter who has abnormally bilateral 5cm each side elongated styloid process & live on the south coast of the UK (England). General doctors looked it up in internet, consultant 1 vague, no surgery experience, same with Consultant 2 & no 3 said he has done several through the mouth & turns out to be 5. We are struggling to find anyone we can see that knows about Eagle

Thank you Sharon xxx


#2

UK doctors with experience are few and far between I’m afraid…at least that we’ve heard on this site! I saw Mr Axon at Addenbrooks in Cambridge, so a bit of a trek for you, but I think he’s the most experienced surgeon in the UK- I think he must’ve done at least 30 surgeries, and he’s a skull-based surgeon so he does external surgery and takes the styloid out right back to the skull base. (Not sure how old your daughter is, but styloids can occasionally grow back if some’s left in, maybe if she’s still growing this could be more likely- we’ve had a few members who’ve had that happen.)
There have been a few other members who’ve had surgery, one in London, but they’ve never come back to let us know who their doctor was or how they got on, unfortunately.
You could try looking for skull base surgeons/ otolaryngologists, ENT’s with experience or any neurovascular surgeons with experience in the head and neck area, or travel to Cambridge…
Good luck, let us know how you get on.


#3

yes Mr Axon did my op and he is very good. Its made a huge difference.I was very fortunate to discover this Eagle site and got his name from here. I travelled to Cambridge from Devon and it was def worth it. He said he had done a few hundred styloid removals and he is also researching the effects of blood flow. Think he said he was the first to do it, so def really good.Hope things go well.


#4

Mr Corbridge at Reading is on our list as well, but he seems to have turned down the last couple of people who saw him.


#5

I have had both of my styloids removed by Mr Saunders based at the BRI in Bristol. He is an ENT surgeon. I’m not sure how many cases he has seen but it certainly helped me when I had my left side done over 14 years ago and then my right side about 5 years ago. I have had some regrowth on the left side so I may have another operation soon.
Hope this helps.


#6

Thanks for that info, Purplethings, but sorry to hear yours are growing back.


#7

Hi, I’ve now had 3 intraoral surgeries, 2 on my left hand side over the last 15 years however my last surgery in October 2017 has not helped my symptoms or pain. I’ve now been referred to a differenf surgeon who will asses me for an external approach. What questions should I be asking when I meet with him? Obviously have you done this before!!
Thanks in advance for your help.


#8

Sorry to hear that your last surgery hasn’t helped- that’s really rough…
If you get yourself as well-informed as you can, then that’s helpful- there’s lots of info in the Newbies Guide, & also links to research papers.
Do you know why the other surgeries weren’t sucessful? Have they not removed much of the styloid process? If you’ve had a more recent CT it would be helpful as any evaluation could show up what the problem is. ES can be caused by either an elongated styloid process, or calcified stylo-hyoid ligaments, or both, so it would be useful to know which you had previously, & what they removed at your surgeries. The most common reason why surgery fails is because the surgeon hasn’t removed enough of the styloid process (external surgery generally gives a better view so that more can be removed), but we’ve also had members who’ve had pieces left in, the end of the styloid not smoothed off, & calcified ligaments detached but left in… As you’ve found out, the SP can re-grow, so to take it back as far as possible is best.
So you need to make sure that the doctor will remove as much of the styloid process as safely possible, preferably right up to the skull base (which a skull base surgeon will be able to do if you’re seeing one of them). If you have calcified ligaments, make sure those will be removed as well, & I would also be worried about scar tissue as well as you’ve had several surgeries; could scar tissue be causing some of your pain? You could also ask about swelling post-op; some doctors put a drip in or prescribe steroids to reduce it.
I can’t think of anything else, but good luck!


#9

Hi Jules, thank you so much for your reply. The questions you have raised are really helpful and I will certainly make a note ask them next week. I believe that over 1 cm was removed in my last op but the pain is higher up so I think i need more removed, but as you say scar tissue could be causing a lot of my issues. It may be that as i only had the last op in October 17 I need more time to recover. Thanks again for your help.