When I was first diagnosed with ES in 2016, I wasn’t given much information about it and I was told that the feeling of a lump in my throat was actually all in my head and caused by anxiety and depression. Not feeling heard, every new symptom from ES gave me extreme health anxiety where I thought I must be dying and this feeling was hard to shake because doctors would dismiss it as anxiety rather than real symptoms. This resulted in regular panic attacks and often paralysing health anxiety and becoming very low - this also then served to prove the doctors anxiety/depression diagnosis and further ignore my symptoms. I was worrying if I was dying from this foreign body in my throat and it had a major impact on my life. I eventually came to manage the worry by telling myself ‘you are dying so you just have to get on with things’ - weirdly giving myself certainty helped and I’ve been able to manage my fears around ES symptoms for a number of years this way. However, recently, I’ve been having new symptoms and I can’t get past them. I’ve been having increased pain swallowing and the back of my tongue has been hurting a lot when I eat or talk. I’ve also noticed my sublingual gland on the floor of my mouth is swollen and when I press it feels like there is some pressure towards the back of my mouth down into my neck. This is all on the left side of my mouth (same side as symptomatic ES). Are these symptoms something others have encountered with ES? I don’t want to go to the doctor/dentist every time ES delivers me new symptoms (quite frequently) but equally I don’t want to miss something that may not be ES either. How do others here deal with this kind of scenario? And any tips on how to deal with the anxiety and general feelings of hopelessness that can accompany this condition?
Mafre, I’m sorry your symptoms are changing/advancing. ES tends to be progressive over time if left untreated. Your current symptoms are among those others have experienced. I had the back of the tongue pain/pressure (caused by the glossopharyngeal nerve). The swollen sublingual gland is innervated by a branch of the facial nerve. Both of these nerves are known to be irritated by elongated styloids. Below are 2 short video that gives info about those two nerves & their function/dysfunction. The best way to reduce symptoms is to get an Rx for a nerve pain medication. Ice &/or heat have also been helpful for some members. For some people, ultrasound guided lidocaine/cortisone injections into the tonsil area has helped from a few days to a few months but sometimes not at all.
Do you have any plans to try pursuing surgery again?
Thanks @Isaiah_40_31 - those videos are really informative. It’s reassuring to hear that these symptoms are familiar for ES.
It’s incredible what nerves can do.
I’m finding that the submandibular gland also feels pressured and sporadically squirts out saliva if I yawn or something like that. My left styloid is very close to this saliva gland so I’m assuming it’s causing physical pressure on it as well as affecting the nerve.
I’m on the list for intraoral surgery and awaiting dates. They said I could expect to have the surgery in 5 months about 5 months ago. I called them the other day and they said I am on the list but they’re not sure when it will be. I’ve informed the secretary that my symptoms are progressing and they said someone would get back to me. I’m going to call regularly though. Once nerves have been irritated or damaged, does removing the styloids help or are those symptoms likely to continue post surgery?
So sorry that your symptoms are changing, not surprising you feel anxious…does your salivary gland give you pain after eating? If it isn’t functioning properly or is getting blocked small stones can form. It might pay you to look up ‘unblocking a salivary gland’, there are some simple techniques to keep the saliva flowing, like warm compresses, eating citrus fruit or lemon sweets, & you can massage it.
I had a blocked salivary gland at the same time as my ES symptoms flared up- I was never sure if it was the nerve affecting it, or inflammation, or just a coincidence…whether nerves heal post-surgery varies a bit depending on how much they’ve been compressed/ irritated. I had facial pain from affected nerves which has improved after surgery but not gone away completely. Usually it does resolve.
I hope you hear about your surgery soon!
You’re doing the right thing, by checking in w/ your surgeon’s office, @Mafre. It can come to a point where periodic polite phone reminders can help get your surgery date on the calendar. It does seem after awhile, that some people just get pushed aside in deference for others. Doctors just don’t seem to understand how awful ES symptoms are.
Jules has given you good advice which may help reduce your salivary gland discomfort whether or not it has stones. I also agree that though nerves usually heal well, some may not stop causing symptoms completely. I found that mine got well enough for me to function normally & the residual pain I have is just annoying not debilitating.
Please let us know when you get a surgery date.
Thanks @Jules - as you’ve touched on, it’s that not knowing if it’s a coincidence or ES that can cause real anxiety around the symptoms.I’d looked into saliva gland problems and the saliva stone issue had seemed a possibility, however last night (as I watched a movie and had a laugh out loud moment) i felt the styloid shift position and instantly felt relief, the swelling has gone down a lot and my tongue pain has completely gone, so it suggests it was perhaps interfering with a nerve in its previous position. The feeling of the ES is still there but the new symptoms have dissipated. The saliva gland still feels sensitive and present but there is a sense of relief. It’s so weird. But it’s reassured me that the pain and discomfort I’ve been experiencing is due to ES and it’s reassuring as it suggests when the styloid is out there will be at least some positive results even if some symptoms persist. Can’t wait to get these things out of my neck.
I’m really glad your styloid shifted & you have some respite from your new symptoms. I sure hope that lasts!
I’m glad the problems eased for now anyway- shows the value literally of a good laugh!
Thanks @Isaiah_40_31 - obviously I’d like the whole back of my throat to be better but even a reduction in symptoms at this point would be nice. I’ll keep you updated with surgery dates.
Also the respite was fleeting and sharp pain has returned but my anxiety around it has eased a bit. I find it’s so hard to want to do anything when it feels so bad so I need to get surgery soon to have some sort of quality of life. I know there are a lot of people on here that have far worse symptoms so I also feel lucky that it’s not completely debilitating.
I’m glad that your anxiety around the symptoms is not as bad, I feel for you with the waiting though, sending you a hug
Thanks @Jules - I found out today that I could be waiting a year for the surgery. Thought it was imminent so very disappointed. I welled up when I heard the news as it feels like an eternity away. I think maybe I haven’t communicated how much of a negative impact it’s having on my life, sometimes finding it hard to eat or sleep and so am going to try and get another consultation to update them. I fear this is going to be a long journey!
I thought my 6 months was long enough! I feel for you, I hope there’s something that can be done to speed it up, do they have a cancellation list? Sending you a hug
That is discouraging news, @Mafre! You’ve already waited a long time, why would they push your surgery out another year? I don’t understand!! I agree w/ @Jules, ask about a cancellation list, plus your idea of getting another consult to evaluate your present condition is a good one. You should be able to communicate w/ the doctor you saw via email how ill you feel even though it’s after the office visit.
It’s just the state of our NHS I think @Isaiah_40_31 , it’s in a mess…
Not the way it should be. So difficult for you all!
@Isaiah_40_31 @Jules It’s certainly not ideal. NHS is in a difficult position right now and I understand that there are people with more immediate health needs than me, but ES is having such a devastating impact on my life and, with the rate the symptoms are worsening, waiting a year is unthinkable. I’ll update when/if I get to talk to consultant. Thanks as always for your advice and support.
I agree, ES can definitely affect your quality of life badly enough to not be able to function, and unfortunately this doesn’t seem to be recognised as a priority by doctors…praying that you get in sooner
Quick update: I was able to speak to ENT the other day about waiting list - no dates are being set for routine surgery until 57weeks after appointment, I’m currently at 27 weeks so won’t know date until next year. I explained symptoms had changed and a call with consultant has been arranged. My gut feeling is that I don’t think it will speed things up and I expect that wait to get longer.
Oh my goodness, @Mafre! That wait time for surgery is incredibly long. I am so sorry, but I’m glad you’re 27 weeks into it already. I do hope that your symptoms change will allow you to scoot closer to the front of the line, but you’re being realistic by not expecting that. I hope your new symptoms are meaningful in an “expeditious” way.