Feeling lost, unheard

WOW! IA had a lot to say, @OMM9420! What was suggested regarding working toward recovery is interesting. I have a friend whose daughter has geographic tongue & she uses a tongue scraper (these come in metal & plastic forms) to gently scrape her tongue daily. She said that milk makes her geographic tongue coating worse & things like chips or hard candy that she sucks on can make her symptoms worse. Another thing she suggested is Magic Mouthwash which is a prescription. I looked it up - https://www.millerbraces.com/wp-content/uploads/2021/01/Magic-Mouthwash-Demystified.pdf.

A brand of toothpaste that has no sodium laureth sulfate (SLS) is Sensodyne. I’m not sure if that’s available in the UK but there should be something similar.

I hope the additional information you’ve been given in response to your AI info is helpful.

2 Likes

Honestly I don’t regret posting the surgery now , I believe ChatGPT is right , if already got nerve irritation the surgery could have made things worse , I’ll wait for now @Isaiah_40_31

1. What your imaging and reports actually show (plain language)

:red_circle: Eagle syndrome — this is

real and significant

in your case

Based on:

  • The CT images you shared

  • The Cleveland Clinic report

  • Luke Cascarini’s letter

You do not have a “borderline” Eagle syndrome.

You have:

  • Markedly thickened, elongated, calcified right styloid process

  • Calcified stylohyoid ligament along its entire length

  • The tip is embedded into the right tongue base

  • Contact with:

    • Right external carotid artery

    • Branches (lingual, facial)

    • Close proximity to the internal carotid artery

  • Thickness 8 mm on the right vs 3 mm on the left

This is anatomically very convincing Eagle syndrome.

Luke Cascarini saying:

“Probably one of the most bulky stylohyoid calcifications I have seen”

…is not casual wording. That’s an expert speaking plainly.

Does Eagle syndrome explain

some

of your symptoms?

:check_mark: Yes, very plausibly:

  • Right-sided throat discomfort

  • Tongue base irritation

  • Glossopharyngeal nerve irritation

  • Referred ear/jaw/neck pain

  • Worsening with swallowing, talking, tension

  • TMJ aggravation

:warning: But it does NOT explain everything.

What Eagle syndrome does

NOT

explain well

It does not fully explain:

  • Migratory ulcers (left, right, under tongue)

  • Systemic body aches

  • Rib pain

  • Sleep fragmentation with “wired” awakenings

  • Sensitivity to supplements

  • Widespread symptom amplification

Those point to central sensitization / autonomic dysregulation layered on top of a real structural problem.

This distinction is crucial.

2. Was postponing surgery reasonable?

Yes. Absolutely.

Here’s the key truth:

You can have a real structural problem and a sensitized nervous system at the same time.

Operating while the nervous system is unstable can:

  • Prolong pain

  • Increase neuropathic symptoms

  • Lead to disappointment even if surgery is technically successful

Your surgeon asking you to be “100%” is excellent practice, not dismissal.

So postponing:

  • May have been frustrating

  • But was medically reasonable and cautious

Will surgery likely be needed

eventually

?

Based on imaging alone:

:backhand_index_pointing_right: Yes, surgery is very likely to be beneficial at some point.

But timing matters more than urgency.

The best outcomes happen when:

  • Sleep is more stable

  • Pain is less global

  • Anxiety is lower

  • Expectations are grounded

  • The nervous system is calmer

Right now, surgery is not urgent, but it is valid.

3. Deviated septum — where this fits

Your CTs show:

  • Rightward septal deviation

  • Bony spur contacting inferior turbinate

  • No active sinus disease

This can:

  • Worsen nasal breathing

  • Promote mouth breathing

  • Fragment sleep

  • Increase TMJ load

It is secondary, not primary.

Most sensible priority order (which your surgeon also implied):

  1. Stabilize nervous system

  2. Address Eagle syndrome

  3. Septum / TMJ later if needed

4. Probiotics — should you take them?

Given your history, this is important.

Short answer:

:warning: Do NOT start probiotics right now.

Why:

  • You’ve had heavy antibiotic exposure

  • You’re very supplement-sensitive

  • Probiotics can:

    • Increase histamine

    • Worsen nerve symptoms

    • Increase bloating and vagal irritation

    • Trigger tongue/throat sensations

In sensitized people, probiotics often make things worse before better.

When probiotics

might

be considered later

Only when:

  • Sleep is more stable

  • Pain is less reactive

  • Nervous system calmer

And then:

  • Single-strain

  • Low dose

  • Introduced slowly

  • Not multi-species blends

For now, your gut is better left undisturbed.

5. The most important synthesis (please read)

You are not imagining this.

You are not “just anxious”.

You do not have an infection being missed.

You have:

  • A real, significant Eagle syndrome

  • On top of a sensitized nervous system

  • After years of medical stress and antibiotic exposure

That combination explains everything far better than any single diagnosis.

The plan you are on now — calming, stabilizing, regulating — is exactly what improves surgical outcomes later.

What I recommend next (if you want)

I can help you:

  • Decide how to know when you’re ready for surgery

  • Build a pre-surgery nervous-system stabilization plan

  • Prepare specific questions for your surgeon

  • Decide Eagle vs septum sequencing

  • Build a low-risk gut recovery plan (without probiotics for now)

You’ve shared a lot — and it makes sense now.

Tell me what you want to focus on next.

@Emerald @Isaiah_40_31 @GeorgiaKay @Jules

So I try to avoid taking medications as much as I can even when I take Valium I take it for a day or 2 no more .

amitriptyline and gabapentin I try to avoid , amitriptyline I tired it and made things worse gabapentin I heard it’s addictive .

My plan now is to focus on more holistic approach , seeing my therapist for EMDR therapy work on my fear/trauma from surgery too. Also see my physiotherapist for pelvic problems from the prostatits and the other physiotherapist for upper body problems .

Also found reflexology treatment near me and i remember it used to help me a lot with prostatits pelvic pain symptoms many years ago when i used to do it.

Used the nurosym device this morning and I do feel it’s helping a little but it’s too early to say I’ll start exercising too with resistance band nothing intense at all only 15 or 20 minutes of resistance band exercises

2 Likes

I hope that the nurosym device does help…I can see the point of postponing surgery when your nervous system is so heightened, but equally lots of members have had similar with vagus nerve compression by the styloids, so if the styloids are causing this for you, it might not settle until the styloids are out? But that is a real dilemma, and a bit of a catch22!
I hope the other therapies you try all work together for your health to improve, and please keep us informed as to how you are…thinking of you :folded_hands: :folded_hands:

2 Likes

@OMM9420 Consider looking into PRT (pain reprocessing therapy) or EAET (emotional acceptance and expression therapy) which are both designed to specifically address central sensitization or mind/body syndromes. Alan Gordon’s book, The Way Out, is excellent as is Harold Schubinar’s books, Unlearn Your Pain and Unlearn Your Anxiety and Depression. Painbrainfilm.com is a short documentary that gives an excellent look at Neuroplastic syndromes. Also, there is a guy in the UK, Phil Parker who developed The Lightning process which is A training program that teaches you to change the way your nervous system controls your body. There is a lot emerging in this field right now and it’s pretty exciting. I think most of us in the Eagle’s community who have spent years struggling with symptoms and looking for answers also struggle with neuroplastic syndromes simply because our brains and nervous systems have been hypervigalent for so many years. As human beings, our nervous systems are already velcro for bad news and teflon for good. The good news is that it is all changeable with the right effort and we know so much more now about exactly what works. I hope you find something that calms your nervous system so you can proceed with addressing the structural issues.

4 Likes

That’s fantastic info @Chrickychricky, thanks for that, I’m sure it’ll help lots of members! I’ve added it in to the Newbies Guide Section about treatments…You’re such a blessing to us all :hugs:

2 Likes

Hi @OMM9420 , how are you feeling? Have you had any more mouth ulceration episodes? I’m a bit late to the thread, but I went down a rabbit hole recently that randomly led me to Behçet’s disease (see Behçet's disease - NHS , and What is Behçets? ), and I remembered this thread. Was Behçet’s ever discussed during your previous Dr consults? It’s an autoimmune disorder whose main hallmark is recurrent and frequent mouth ulcers (on lips, inner cheeks, or tongue), but can also present with a suite of other symptoms which seem to fit your case, including joint pain:

and inflammatory bowel disease:

The symptoms of BD also seem not to be constant, but come and go in flare-ups, which I think also fits your case.

If you’re still struggling with these symptoms, it might be worth looking into it and speaking to your GP? For diagnosis criteria, and how to pursue a diagnosis in the UK, you can check out this UK-based foundation’s website, seems to be super comprehensive: How is Behçet's diagnosed? . Importantly, there are treatments for it that can help improve symptoms and minimse the chance of complications.

As always, I need to stress that I am just an average Joe with ES, so take what I say with a hearty pinch of salt.

1 Like

That’s really interesting info, thanks for sharing that @crumblecookie !

1 Like

@crumblecookie - Thank you for following up with @OMM9420. His tongue ulcers have been such a mystery to everyone. I’m sorry you also had symptoms that led you to Behçet’s.

It’s interesting that erythema nodosum is mentioned as one potential symptom for Behçets as my daughter had that a few years ago. Once recovered she’s had no other symptoms so in her case it wasn’t associate with anything else.

2 Likes

Hi @Isaiah_40_31, @Jules, happy to contribute, maybe it will be of some help. Just to clarify, I don’t have symptoms of Behçet’s. I was just reading about autoimmune diseases more generally when I stumbled upon it :slight_smile:

2 Likes

WHEW!! Glad you dodged that bullet, @crumblecookie! ES & surgical recovery are plenty to deal with w/o adding in something else rare!

2 Likes

Hi @crumblecookie sorry just saw this.

Yes still getting the ulcers , once around 4th of January then went away after couple days then again on 17th January.

I’ve seen a rheumatologist he ruled out Behçet’s disease also just saw a neurologist he was pretty unwelcoming haha as soon as I went in the room he was like oh I’m not a pain doctor I treat epilepsy and I was like then why did my GP send me to you. Anyway I did an EMG and MRI they are all good. He told me there is nothing systematic that can cause ulcers and they have no idea why I keep getting them , the GP ignores me now because I’ve seen all the doctors, infectious disease, rheumatologist, ent , oral medicine etc just no help at all here in UK they don’t care anymore really and they keep saying stop going to doctors you got nothing. I’m seeing the neurologist on Tuesday and see what he will say .

I was thinking yesterday to do my deviated septum first before ES so my breathing could be better after ES surgery, my sinuses are awful . I just can’t decide when to do because of the ulcers I keep getting and the biggest problem is that as soon as the ulcers show up I get an overall body aches pains fatigue feel so tired like my body is fighting something, been recovering from a cold for 8 days now and the ulcers when it showed up just made all the symptoms worse.

Also I’m unable to decide to do surgery because of my fear of surgeries the trauma I got from when I did the tonsils and wasn’t given painkillers. I’m working with a psychologist now to overcome this fear

1 Like

@OMM9420 - I just found that Behçet’s Disease is a vascular disease for which the mouth/tongue ulcers are just one manifestation. Your tongue ulcers could also be a form of some other type of vasculitis. Maybe seeing a vascular doctor for a second opinion would provide you more information.

2 Likes