I do agree that it sounds like you could do with having more detailed swab & culture doing; I don’t know enough about routine testing to know whether they just check for common bacteria, & whether this is something weird which needs a more thorough testing? That makes sense though…
It is a worry that if this is a strange bacterial infection & you have surgery that it could spread, I agree…I don’t know whether if you did have surgery if you could be taking a course of antibiotics in the run-up to the surgery and afterwards to keep it at bay? That’s something you’d have to ask a doctor about…
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Well he does give antibiotics after surgery, so maybe I could ask him to start the antibiotics earlier.
I’ll see with the infectious disease specialist maybe he could take a biopsy.
I did a swab for all kind of infections and fungal swab test , nothing came up.
If it didn’t show anything it might not be bacterial, but have no idea why antibiotics makes it better it means it’s fighting bacteria.
But also it did show up yesterday last day of antibiotics and it showed up even while on antibiotics.
Another thing , manuka honey helps that means there is probably a bacterial infection.
Maybe it’s just the Vagus like @TML says or it’s because of the change of the weather.
I’ll see the infectious disease specialist if he doesn’t find anything and says it’s ok to do surgery I’ll just do it and hope for the best maybe take antibiotics couple days before just for protection I’ll ask Mr Hughes .
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Seems like this thread went in a pretty different direction, but your symptoms are very similar to mine. Keep pushing, most doctors are pretty mediocre at what they do. Don’t be afraid to get multiple opinions and research yourself.
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A lot of them just do the bare minimum.
If you get all blood tests negative and swab they tell you oh just forget about it even if you say it keeps coming back for 3 month now .
A good doctor would refer you to another specialist and do a more thorough examination @jalexy12
Doctors nowadays are not good at all , I had to do my own research to see who I should see.
Like for example I saw ENT and gastroenterologist they didn’t recommend an oral medicine doctor or infectious disease.
I found out myself that these 2 specialist can help me .
I’ve seen a oral medicine doctor did all tests nothing, hopefully the infectious disease one can find an answer, unfortunately I have to wait until my GP is back on 27th because the clinic told me I have to have a referral to book an infectious disease such a hassle and waste of time
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Or, the honey helps by neutralizing the acid on your tongue and providing a soothing/protective layer on it which protects against acid reflux. But also could be bacterial
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@Figuringitout - How are you doing with your doctor search? Any progress? Have you been able to get a CT scan w/ contrast to verify whether or not you have vascular compression?
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Hey guys,
So update since I’ve seen infectious disease doctor.
He repeated all the STI tests all negative except hepatitis A and EBV ( mono ) but he said EBV is past infection not active plus it doesn’t cause recurring tongue ulcers.
He did full blood picture all good he did inflammation markers all good.
Last time I got ulcers was 20 November then it started again 3 days ago .
I had a biopsy booked in Thursday 4th but canceled it because there wasn’t any ulcers and showed up next day 
it heals in 4-6 days .
The thing is when I get it I get pain all over body joints elbow ribs etc I’ve always had these symptoms but armpit pain is new started at end of October also all the symptoms feel amplified since July when I started getting all this .
I spoke with Mr Hughes Friday he wanted to postpone the surgery because he said your already in a lot of pain and surgery would be a big hit so I suggest we postpone it I told him let’s just do it this time .
I’ve been on ibuprofen, advil , aspirin changing medications since 20 November to help with the body pain and sleep, yesterday I just took Benadryl no pain killers .
Don’t know really what should I do , I think I’ll just go on with the surgery, the infectious disease and oral medicine said there shouldn’t be any problem going on with the surgery
Does that mean you might have Hep A?
It’s a difficult decision about whether to have surgery; if ES & the inflammations it can cause is somehow linked to the flare ups you’re getting, then it would be good to get the styloids out & to heal, but on the other hand having surgery when your body is obviously in some sort of inflamed state could possibly affect your healing after surgery? It’s not a medical opinion though, alot about ES doesn’t make sense from a medical point of view!
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Oh ya hepatitis A but that was many years ago not active.
Basically hepatitis A is not chronic it’s acute and once you get it you’re immune to it .
So thats not what’s causing the symptoms, Mr Hughes seemed kinda worried .
So really don’t know if I should do it or not , I’m seeing rheumatologist on Friday . @Jules
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You are “between a rock and a hard place”, @OMM9420. I agree w/ @Jules that getting your styloids shortened could go far toward helping reduce the inflammation in your body & the overall symptoms you have, however, since you’re in an inflamed state (in spite of what your blood & other tests showed), that can make you more vulnerable to post op complications & slower healing. Maybe it’s worth it to just get it done, but it’s so hard to know & we’d hate to encourage you to go ahead w/ surgery & have you experience something worse. I’ll pray God makes it clear to you whether to proceed w/ the surgery at this time or wait a bit longer. 
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Thank you @Isaiah_40_31 I’m constantly praying too .
Have you heard of paul o’flynn ent before ? AI showed me him and Mr Hughes are the top surgeons for Eagle syndrome in London .
Also I’ll be seeing a rheumatologist on Friday so I’ll see what he will advise me.
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@OMM9420 -
I haven’t heard of Paul O’Flynn, ENT. Perhaps you should see if you can get a consult w/ him. He might have an opinion about what’s going on w/ your tongue & if it could be related to ES. I know you’re anxious to get your styloidectomy, but comparing surgical strategies & understanding of ES between doctors is a good idea if possible. I got a second opinion after being diagnosed & realized if I’d had the doctor who diagnosed my ES do my surgery, my outcome would likely not have been as good as it was because I chose my second opinion doctor to do the surgery. His surgical approach was pretty close to what is recommended on this forum which is why I chose him.
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Thanks @Isaiah_40_31 I emailed to book an appointment with him.
Hopefully I’ll be able to see him before the surgery
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I hope he’s able to help you. It would also be great to have another UK Doctor who is an experienced ES surgeon on our Doctors List. 
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I found The Eagle Has Landed: an unusual case of Eagle’s syndrome case report pdf but don’t want to post it because it has very graphic images of preforming the surgery.
If you all are ok with it I’ll post it .
That’s really interesting, helpful for UK members & those with carotid artery compression, thank you for posting about the paper, & potentially another UK surgeon! I have posted the paper in the Research papers category, & added his name to the doctors list explaining…
I hope that you’re able to get some answers about whether to go forward with surgery!
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WOW! That was super fast, @OMM9420!
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Ya I emailed them like 2am 
because I was awake from the symptoms and ulcers so I started doing my research, found him and emailed right away @Isaiah_40_31
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Great news that you were able to get an appointment that quickly, not so good that you weren’t able to sleep! Maybe they noticed what time you emailed & decided you’re an urgent case!
As we’ve not heard of anyone having surgery with him, we do have a list of questions we suggest that people ask a doctor about their experience & surgery (as well as obviously about the ulcers), they’re in this section if you want to have a look:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hope it goes well!
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