Hi, first time posting, this seems an excellent group. Relieved to find you as suspecting I have ES, but 2 GPs, a dentist & a maxillfacial surgeon here in the UK have dismissed me recently. I’m interested to know if anyone else here has, or has had, the symptoms I have. Things that confuse things a little are that have rheumatoid arthritis which has meant a lot of neck pain & inflammation (& elsewhere) in the past when the RA was active, plus have had whiplash in the past (no one x-rayed it or anything, but had lot of pain for a couple of years a few years ago). Also the powerful drug I’m on for the RA keeps my immune system low so I’m prone to minor infections in the mouth etc. Symptoms I suspect may be caused by ES are:
significant bony protrusion (beneath throat lining) sticking into my throat cavity below/by the tonsils on right side only; noticed a few months ago. Can’t see it just looking directly into the mouth. Have to stick long finger right back beyond the mouth cavity to feel it, but it’s very prominent & feels like it extends up and down. I was feeling there as I feel there’s something in my throat all the time. MF specialist claimed not to find anything wrong despite me insisting he tried 3 times to feel it. He mumbled ‘hyoid’ & when I started to ask why the styloid was sticking into my throat he wouldn’t listen. Before that appointment, I’d see 2 GPs, one the most senior who thought it was a ‘cyst maybe’ & & the dentist who referred me urgently to the MF spec. saying it might be a ‘nodule’. I told them all it’s a bony thing, not a cyst.
Very thick throat for last year or more; not always sore, but always feels restricted & like something there, a few times have nearly swallowed the wrong way like it’s not right recently; also affecting breathing a bit;
Neck aches & uncomfortable all the time. When I hold my neck and head in the correct posture it’s very uncomfortable and hurts, so I end up slumping the neck/head again. In the correct posture I feel my throat even tighter and get breathless & have a dry cough.
I’ve recently had some numbness coming and going on the right side of my tongue further back (same side as the bony thing) & a couple of times when lying on that side have had a sudden intense pain in the tongue in the same place.
Occasional ear ache on the same side, a new thing.
Neck feels thick and lumpy.
Headaches & sometimes dragging pain above eye;
It’s not clear either whether the bad heads, breathlessness, high BP (now on BP tablet), jaw bone erosion, gum disease, weight gain & other effects I have are all due to the drug I’m on, or whether I do have ES which is causing some of these symptoms. I’d be grateful to hear any similar experiences. The fact that this bone thing is sticking into my throat cavity is proof of something being out of place and from all I’ve looked up online, it strikes me it must be the styloid process grown or knocked out of place. I don’t know if it has just gone sideways, or if it’s an extra growth to the side and goes longer down as well. I know a CT scan is what is needed to show what’s what & was surprised the MF surgeon didn’t order one. But from what I’ve seen on here, some specialists dismiss ES as they don’t deal with them! Sorry for all the ramble. I think I’ve forgotten some symptoms, but all for now. Thank you.
Welcome to our forum & thank you for sharing your symptoms & how your diagnostic (or lack thereof) journey has gone so far.
All the symptoms you’ve mentioned are those we see w/ ES, though you mentioned the MF specialist mumbled “hyoid”. Hyoid Bone Syndrome has very similar symptoms to ES & we do have some members who have both. That said, because you can feel the “bone” in your throat behind your tonsils, it’s most likely the styloid you’re feeling.
I had many of the symptoms you’re describing & can tell you they are caused by irritation to some of the cranial nerves. Our other moderator, @Jules, wrote some excellent posts which thoroughly describe the symptoms of ES & their potential causes. I think you’ll find these posts very helpful. Please keep pursuing getting the CT scan as that will be your best ally toward a proper diagnosis when it’s in the hands of a doctor who has ES experience.
Hi Blodyn, & welcome here!
I agree with @Isaiah_40_31 , that given your symptoms & that you can feel something bony in the back of your throat it does seem likely that it’s the styloid…there is more detail in the Newbies Guide @Isaiah_40_31 posted the link to, but briefly it sounds as though your Glossopharyngeal Nerve or Hypoglossal Nerves could be being irritated causing the tongue symptoms, & maybe the Trigeminal Nerve with your eye pain…The styloids can also compress the Vagus nerve which has an autoimmune function for BP, breathing, heart rate, digestion…but obvs it’s difficult to say if ES could be causing issues for you or the medication.
We do suggest that members perhaps find one of the research papers linked on here which show symptoms like yours, and print that off to take with you to an appt to show doctors, as you’re finding, doctors can be dismissing! We had a spell of having quite a few members from Wales, I don’t think we’ve had any post for a while, but I think several were diagnosed by Mr Cellan Thomas, University Hospital Wales, Heath, Cardiff (Max-Fac surgeon on Head & Neck Cancer team), so I don’t know if you could get a referral to see him?
Thanks you so much for your very helpful answer and further information, which I’m about to have a look at. Really appreciate you taking the time to help. I managed to see a GP again today & explain (she had to look up ES online!) & I’m being referred back to the specialist who dismissed me, but he’s the only one who can ask for a CT scan, so will have more evidence now from you & this group to present to him. Thank you so much once again.
Thank you ever so much for your helpful comments following my first post here. I shall have a good look at detail where you suggest. That’s very helpful you mentioning those nerves that the styloid could be impacting on, which explains some of the symptoms. A great idea to print off some of the papers/info to show the doctor/s. I had to explain what ES was this morning to the local GP, but when I see the MF specialist (been referred again) who was so dismissive and didn’t check properly, I shall certainly be armed with the info you suggest. Also interesting you had a run of people from Wales in the past! Thanks very much for mentioning Mr Cellan Thomas. Unfortunately I live right in the North of Wales, so several hours drive away (Manchester, Liverpool, Chester etc are a bit closer, so will check out more - I saw some list of ES specialists on here the other day & will look more closely at that too).
Thanks very much again. Appreciate it.
If you are able to travel, it’s definitely worth trying…I suspect some of our US members will grin at that distance, many of them have flown across the country to see experienced doctors!
Is it easy to get a referral from Wales to England?
Ha ha! Yes, I know what you mean. I used to live abroad and not think twice of travelling 1000s of km regularly! My comment sounded rather tame, but I’m full-time caring for my partner so it’s hard to go far that’s all. But I would certainly otherwise have no issue travelling. I haven’t person experience about referrals from Wales to England but for certain treatments, operations & specialisations (and currently catching up on some waiting lists for things like cataracts) - patients are sent over the border to Liverpool, Stoke, Birmingham, Manchester etc. But, as others have said, if you’re not diagnosed with ES on the NHS in the first place, then you’re not going to be sent to the right specialist wherever they are. Hence, the need to seek out the best doctors privately…Not an easy situation. But very grateful for this group and all the helpful information you are providing. Thank you.