Flare up fed up v2

Hi everyone,
Hope you’re all well.
I was diagnosed with eagle syndrome (elongated styloids on both sides) in 2017 as I was feeling a lump in the left side of my throat. I went on a bit of a journey with it. It caused a lot of anxiety and I’m pretty sure was a major factor in many years of depression (or at least the feeling of helplessness from it was). Last year I lost some weight and stopped drinking alcohol and my symptoms seemed to disappear for about 6 months. I felt like I had it under control until about a month ago. I’ve had a flare up and its been incredibly painful and uncomfortable and I’ve found it really scary which has caused a general sense of anxiety which I thought I’d had under control and is now hard to shake. The main thing I’ve struggled with is the sense of a foreign body or bodies around where my tonsils are (again on my left side). For about 4-5 weeks its felt really rough and claggy around my tonsils and the styloid is feeling like it’s pushing through more than ever. As if a slightly dulled pencil is lodged inside the flesh of my throat and pushing out and there’s some rough feeling around that too including on my tongue that touches that area. That claggy rough sensation has somewhat dispersed (although not 100%) but as I’ve investigated the area I’ve discovered a harder kind of lump right next to the protruding styloid. It feels like hard muscle but it isn’t the same on the other side of my throat. It’s got me worried. The logical part of me is saying it must be to do with the styloid poking through and the anxious part of me is saying what if it’s something more sinister and it’s that that’s causing the flare up? I’ve booked a dentist appointment and asked my GP to be referred to have the styloid removed although the waiting time for that last one is unknown currently due to covid. My GP seemed quite dismissive and reminded me that many patients who have a styloidectomy still continue to have symptoms so it may not be worth it. I’m hoping as my styloid is so far into my throat that it can be done intraorally but I just want it out! I’m pretty fed up with having this condition and the idea of having it into my later years fills me with dread as I can’t enjoy anything at the moment. Has any one else encountered similar symptoms? Have styloidectomies helped and if anyone had an intraoral styloidectomy, what was your experience like? Really appreciate your thought. :slight_smile:

Hi Mafre!

Good (& bad/sad) to hear from you. I’m sorry you’ve had to come back but am glad you had that 6 mo. respite from your symptoms.

Not being a doctor, I can’t tell you for sure what the new lump is you feel in your throat, BUT from my years of experience in this forum, I can tell you that the styloid is the origin attachment for 3 small muscles - the styloglossus, stylohyoid & the stylopharyngeus. The styloglossus muscle assists in tongue function & runs in/near the area where you’re feeling the additional lump. It’s been about 4 years since you were diagnosed & in that time your styloid process could have grown longer &/or thicker which would put pressure on those small muscles & especially the styloglossus w/ the angle that your styloid is growing such that you can feel it bulging into your throat. It’s entirely possible that little muscle is being squished/squeezed by your styloid & has swollen up a bit to defend itself. Here’s a link to a good picture to help you see the muscle locations: Styloglossus Muscle – Earth's Lab

As far as intraoral vs external surgery goes, IF intraoral surgery is done well, it will give just as good of a result as external surgery. The problem is, there is a tendency for doctors who don’t know much about ES & do intraoral surgery, to only slightly shorten the styloid(s) i.e. “snip the tip” & leave most of the remainder intact & some don’t bother to smooth off the remaining styloid which leaves sharp bits that can irritate nerves. Additionally, if there is stylohyoid ligament calcification, it is very difficult to remove that via the intraoral approach. This can leave the patient without symptoms relief plus having to recover from the surgical injury to the throat. Often, the tonsils on the affected side are also removed which makes healing even more challenging & painful. The type of patient your primary doctor is familiar with likely only had the “tip snipped”.

Even for cases such as yours, where the styloid is pressing into the throat area, external surgery is our preference because during surgery, the nerves & vascular tissues can be seen, monitored & moved out of the way, & the styloid can be cut back closer to the skull base & s-h ligaments to the hyoid bone more easily (cut end of the remaining styloid needs to be smoothed off). During intraoral surgery, the surgeon is essentially “cutting blind”. External surgery is also a less painful & quicker surgery from which to heal. A good surgeon will make incisions in areas where they are basically invisible once healed up.

To summarize - intraoral surgery is fine if you can find a surgeon who will take the styloids back as close to the skull base as possible & smooth off the bit that is left & remove any calcified ligament that may be involved; external surgery is our preferred approach for the reasons stated above, but again, both types of surgeries have had good successes. I hope some of our intraoral success stories will chime in.

Here is the link to the Doctors List again. Perhaps Mr. Jonathan Hughes in London would be helpful for you. I’m not very familiar w/ the layout of your country so perhaps there is someone closer.

Who have you been referred to? It’s just that as ES is quite rare & poorly understood, I’d hate to think that you wait months to see a consultant just to find that they’re dismissive like your GP! Like Isaiah says, the updated list is worth a look at to see if you can be referred to one of those doctors? Otherwise if you’ve already been waiting a bit, it might be worth seeing if who you’ve been referred to does private work, then you could make a sneaky inquiry to their private practice to see if they treat ES; if they don’t for private work it’s be unlikely they would on the NHS! It might be worth trying the nerve pain medications- like Gabapentin, Amitriptyline etc, as the sensation of a lump in the throat can be down to irritated nerves rather than an actual lump, so it might help? I didn’t have that symptom so can’t say if it would or not…
I know it’s hard, but given you have been diagnosed already, it would be likely that it is an ES flare up & not anything more nasty, but I can understand your worries…sounds like you’ve been really strong losing weight & giving up alcohol, hope you can keep that going still. Sending you a hug :hugs:

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I had a continual sore throat that the doctors thought it was from post nasal drip. I took antihistamines regularly until one day I looked in my mouth and saw the styloid on one side protruding into my mouth. The soreness in my mouth was from the tissue rubbing against the styloids while talking and eating etc. The ENT doctor that diagnosed me recommended that I do nothing for the ES. And quote “unless you want to have a procedure” in a very condescending way. I had bilateral removal with Dr Hackman.
No regrets here. It resolved so many symptoms in addition to the sore throat.

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Apologies for the delayed response - I’m quite busy at the moment and not getting much opportunity to check in but I really appreciate your responses.
Thanks @Isaiah_40_31 for your thoughts and the doctors list. Especially interesting to hear about the different types of surgery - was thinking intraoral mainly due to not wanting a scar on my neck so its good to hear they tend to fade over time.
@Jules - I’m waiting to hear who I’ve been referred to but hopefully I’ll have better luck getting some progression with surgery than I did last time. Last 2 experiences: system was down and consultant I was booked to see wasn’t in so the person I saw couldn’t help me then when I rebooked the consultant felt inside my mouth and just seemed to confirm I had ES which is what I already knew. Its definitely a separate lump just under my styloid as I can feel it with my finger - it feels like a bit of pea sized muscle - my throat feels all messed up by my left styloid and theres a tight sensation so I’m hoping the styloid has pushed some muscle out of place or inflamed it. It doesn’t really feel the same on the other side. And externally just by my left ear and jaw it feels swollen and I have an awful taste there so I think its affecting my ear too. I notice if I turn my head left it feels like its compressing the area and slightly restricted. Its such a weird and frustrating condition!
@Suzzetteas Thanks for sharing your experience - its so strange that so many doctors seem to be so dismissive of this condition - well done for persevering - your story certainly makes me feel more hopeful of a resolution and more determined. I’m wondering whether some other symptoms I have have are connected - it would be interesting to see if they are resolved too.
I’m finding more than anything - its just sucking all my positivity and I want to give up on my ambitions and hide from it somehow. Its totally had an affect on my confidence and ability to enjoy things on a day to day basis.
I’ve just been away for 2 days and weirdly the symptoms pretty much disappeared the night before I left but as soon as I was about to come home it flared up again. I’m wondering whether some tension in my neck from stress is making it worse? Is that possible?
Thanks again all - your knowledge and support has really helped.

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I’m sure that stress & tension does make symptoms worse- muscle tension can sometimes trap/ compress nerves, which then causes pain, then more tension because of the pain, a never ending circle really! Some members have found muscle relaxants help with that, I had some physio with simple neck stretches which made a difference. Good you had a break for a couple of days at least!

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