Hello - I am new to this forum and im so glad to have found you. I have a ‘probable’ diagnosis from a private ENT surgeon in the UK. I want to get a referral on the NHS to one of the doctors mentioned in your list, specifically Dr Jonathan Hughes. I am seeing him privately soon to get a second opinion but beyond that I cannot afford any more private funding. I asked at the local GP clinic if they would refer me, on the basis that Jonathan has invited me to be referred to him, and I currently have nobody in the NHS looking after me who knows anything about ES. I have simply been told to take Amitryptiline for three months and ‘see how it goes’. The pills are masking the pain but it is still there and I have vascular/neurological symptoms as well as classic ES. How did you all get referred to specialists in the UK? Is there a secret trick to making it happen? Anyone else seen Dr Hughes for treatment? Thanks in advance to anyone who cares to reply. Julia
Hi Julia! I love your name - I love that Beatles song! Just wanted to welcome you. Caring for two young kids while feeling crumby is a big cross to bear. We’re here to help you get all this sorted out.
Thank you so much. I have never experienced anything like this before in my life and if I were not on a high dose of anti-depressants for the pain (!) I dont know what I would do. What really frustrates me is the lack of knowledge and support, and how this thing can just decide to flare up after 40 years of no health issues at all…I did have tonsils out as a young child and there is a large bit of scar tissue which has now split open, presumably by the sharp pointy head of styloid that was residing behind it. I’ve gone from a niggly pain in jaw, to sore throat, problems swallowing, reflux, GI issues, then neck and ear pain, and now head and eye pain. MRI shows excess of white spots in the brain and they want to test me for vascular problems - they are not putting two and two together to realise that ES can be vascular, and I end up just having doctors think I am insane. I currently have absolutely no medical NHS support at all apart from prescriptions for drugs, not even a referral for a CT scan to see what’s going on.
Hi. Yep, perfectly healthy mom of 4 kids who suddenly choked on lunch out of the blue at 42 years old here. I had to go on Celexa (anti depressant) to cope with doctors telling me to ignore it. I wanted to cry all the time. I’m now recovering from having my second side removed - I know what it feels like to have to fight this fight. We are all behind you!
You’re at the bottom of a big set of stairs. At the top is your healing. Right now you just have to climb little by little. The first step is definitely getting that neck scan. Once you have images, that typically gets people’s attention. I’m hoping some people from your area chime in.
Thank you for sharing your story, that makes me feel less of an oddity. Have you had external or internal operations and are you now getting relief? I need a CT scan but I want it to be done by someone who understands the syndrome, because I think I have an odd shaped styloid rather than elongated and it might not show up unless you know what you’re looking for. here in the UK it will be months of sitting on a waiting list. but thank you for the stairs analogy, it’s a good one, I hope we all get to the top to be pain free and happy again as much as possible. X
Hi yes my surgeries have provided absolute relief. In my case my hyoid needed to be untethered from the skull because it was getting snagged and hung up on things when I swallowed. A lot of folks have trouble more up by the skull.
I’m with you that it would be awesome to find a knowledgeable radiologist. At the very least someone curious that’s willing to try really hard to figure it out. I found a couple curious people along my journey and found that their desire to dig uncovered just what I needed at the right time.
That’s great news that you have relief. Good inspiration . Do people generally favour external or intraoral surgery? I guess it depends on each person’s case. Thank you again for your thoughts and I really hope your recovery goes well! X
Oops forgot to say external. You’ll find a very large percentage of surgeries and good outcomes are external.
Thank you that is very helpful. Do you know why the external surgery is better? I suppose it means more of the styloid can be reached. I will certainly have a look through the files on the forum as to what to ask of the consultant.
Yes you are right. When you have time, type in the magnifying glass on this site “first timer questions” from March of this year. That is a discussion I remember being particularly informative
External is better because more of the styloid can be seen, so more can be removed, & there’s less risk of infection. Questions to ask are:
Obviously is surgery external or intra-oral?
Will they cut back to skull base- this is best as regrowth is less likely- or if not will they remove as much is possible, & smooth what’s left?
Will they monitor the nerves during surgery, most do so they can tell if they’re stretching one too much.
Do they give anything to reduce swelling, or put a drain in?
Will you ne in overnight?
There are probably more, can’t think of more right now!
As for your referral, only a consultant can refer you for a CT in the UK, so that’s another hold up. There’s no reason for your GP to make you wait if you’re willing to pay for a private appt., so if it was me I’d either get an appt. with a different GP & try that, or otherwise we suggest that people print off some of the research papers about ES & show them to the GP- like ones which support your symptoms, & your history. The most common/ well known cause of ES is tonsillectomy, you’ve ticked that box! Is the styloid visible where the scar tissue has broken down? If so get the doc to look at that- it’s clearly not right!
Who are you seeing about the MRI to get vascular issues looked at? That might be an avenue for taking ES info along to as well. Or to get a referral to Mr Hughes.
I was diagnosed at the local hospital by a young doctor, but the consultant knew very little about ES & wasn’t helpful, he seemed only to glad to refer me on to Mr Axon to get rid of me! So that part was easy…
As for the CT, if you did see Mr Axon otherwise he has CTs done at Addenbrooks, so they will know exactly what needs to be done. Hopefully Mr Hughes would have a similar system, but you can always make sure it’s requested that it’s to be evaluated for ES, & that they look for the length & angle of the styloids, & if there’s any calcification of the stylo-hyoid ligaments.
Hope this helps, & hope that you can get a rocket uo your GPs backside to do that referral! There’s also info online about what 2nd opinions you’re entitled to on the NHS…
Thank you. No GP so far has been sympathetic, I just get fobbed off and offered cognitive behaviour therapy for anxiety. They just dont understand this form of neuralgia. Thank you for all your amazing advice. I will be well prepared for my meeting. I am also trying to set up a meet with Mr Axon privately so I have two opinions from Eagle enthusiasts!
Welcome to this wonderful forum! I see you’ve gotten some great input from a very experienced member & our wonderful moderator, Jules!
I believe Mr. Axon has more experience w/ ES & ES surgery than Mr. Hughes. When dealing w/ this syndrome, choosing to see a more experienced doctor is worthwhile even if personal financial cost is greater.
Please keep us in the loop as you have consults. We’re here to encourage you & to listen when you’re frustrated.
Thank you very much. I will certainly try to see Mr Axon as well. Great that people have surgeons they can recommend.
Someone may have shared this before, but just in case it is useful, this is how I came to find Dr Hughes at UCLH who gets glowing reviews from patients (although I have only seen one review about ES!). Would you agree with his synopsis of diagnosis pathway and treatment?
Sorry - for some reason I cant share the full article, here is an edited version
My favorite part of this article: “The procedure was a complete success, with symptoms resolving immediately”
I disagree that intraoral is the best method of surgery, although lots of members have had successful surgery that way. As long as he can remove as much of the styloid process as possible, and any calcified ligaments, & this is an easier option for you than going to Cambridge, & you feel confident with him…he sounds experienced.
I second Jules on the approach - I frankly wanted as much out as possible and understood the external approach to be the best way for the surgeon to have access.
My very subjective opinion about intra-oral surgery: it may create a new class of problems, TMD/TMJD, caused by staying for prolonged time with the mouth widely open. Statistically speaking, I don’t have numbers, but if you google, you will find surgeons/dentists talking about the risks of wisdom teeth extraction, which also needs you to keep your mouth open for up to a few hours.