Results from CT neck scan but they still not convinced I’ve ES

[Ness]

![IMG_2473|375x500](upload://4uHrQdpvDVtH3LZNu681Mhz9exX.jpeg

Finally got my cat scan on disc. Follow up call with registrar and he’s not convinced I have ES although the report says elongated styloids and calcified ligament. He wants to talk to consultant and radiography dept and will call me back in 31st January. I know I’ve military neck also with impingement on c7 nerve exit so could it be that that’s causing all my issues?

Head pressure & pain front head and back of skull and neck

Lightheaded

Neck strained feels like it won’t hold my head

Jaw weakness

Right eye pain pressure

Feel like breath not going alway to lungs

Chest pain & back pressure pain

Palpitations

Voice wobbly

Stiff neck

Fatigue

Balance off

Facial twitch both sides around cheeks and eyes
Blurred vision mainly right eye

Pain and pressure both sides of neck

Feel something stuck in throat and chest

Dry mouth

Thick salvia

Numb and sore behind front top teeth

Flushes and hot & cold sweats

Pins and needles in face, neck, shoulders and hands

Ear pain pressure & fullness Floaters in eyesight and blurred

Lying down and hands go numb

Lightheaded especially on coughing

Feeling nauseous

Tinnitus

Your thought would really be appreciated. TIA

[Andy89316]

Those are some some pretty good and pointy styloids. Are you working with one of the UK drs well versed in ES? Lots of of ENTS just don’t know about it or don’t want to diagnose it because its rare.

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[Ness]

I saw Hughes but my scan wasn’t clear or good enough so he ordered his own. Had it done but it was a registrar that rang with follow up. He’s going to go back and talk with Hughes and the radiologist now. I think all he did was read the report & not actually look at the scan tbh. Now awaiting another follow up call with him 31st January. God know why he didn’t talk with them first before calling or why it wasn’t Hughes that called but that’s NHS for you I suppose

[Jules]

It’s crazy that the registrar can dismiss those styloids and say he’s not sure you have ES! I despair They are definitely elongated, probably calcified ligaments at the end as it looks as if there’s a narrower bit and then more calcification…You have symptoms of ES; feeling something stuck in your throat is a classic symptom, pins & needles & soreness could well be pain from the facial, trigeminal and spinal accessory nerve, dry mouth and thick saliva could possibly be the trigeminal nerve, as can pain in the eyes. Some of your symptoms also sound like your vagus nerve could be compressed- nausea and palpitations for example, or that could be compression of the carotid artery, as also with eye pain. It also sounds like there could possibly be compression of the internal jugular veins; feeling head pressure, ear pressure, and off balance feeling for example.
Some symptoms sound a bit like they could be from Thoracic Outlet Syndrome- a few members have had, it’s where blood vessels or nerves get compressed in the chest at the top of the rib cage. It might be worth looking that up if you have time… The C7 impingement might perhaps be causing the arm & hand tingling otherwise, I think the nerves to the hands exit C7-C8.
I’m sure when Mr Hughes looks at the scan he’ll be confident of an ES diagnosis, and will hopefully help you. I don’t know if you can push to speak to Mr Hughes yourself? It might be worth taking a bit of time to read up on here and to educate yourself on the symptoms & what could cause them so you’re confident enough to advocate for yourself. There’s info in here:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s also videos on YouTube called 2 minute Neuroscience about the different cranial nerves which @Isaiah_40_31 has found, they’re quite helpful. And some of the research papers in the Research Papers section can be useful too , you can find some which mention the symptoms you have.
Hope this helps!

[Ness]

Thanks Jules. I’ve got bilateral trigeminal neuralgia with compression on the right side but the left side the nerve is depleted. It would make sense if if compressed in my neck because when I asked the neurologist registrar who I saw in March why my left side was depleted he just said must be being compressed somewhere! Gave my doc advise to give me opioids and if they don’t agree with me ( which they don’t ) refer me back to them and discharged me. I’m sick
If going round in circles between ENT, spinal and neurology if they even give me an appointment. Everyone is waiting on Hughes and pass me off! I might see if I can pay for a private consultation with Hughes & see if I get answers quicker. Might be a way forward because I’m losing confidence with registrars! I’ll look at the links also. Thank you again

[Mcwelly]

I saw JH last year and he ordered scans. The radiologist report didn’t even mention styloids and when I complained - they said JH hadn’t mentioned ES. You’re right, they only read the reports and although JH did follow up with a 12 minute phone call (private), it was quite clear he hadn’t even looked at the scan - unhelpful. Also the mri missed oedema at c1/2 and I’m still battling to be seen. Push!

[Ness]

Thank you for your input. I’ll definitely push for him to look at the scan and ring me personally now! This is so debilitating and I don’t have a life no more. It’s been horrendous since March when all my symptoms started and they are only getting worse. They don’t seem to understand what we’re all going through

[Jules]

I know it must get you down to have to keep battling, it’s such a crazy system
If you were going to see anyone privately, it might be worth seeing Mr Axon otherwise, as yours is hopefully not with C1 involvement, hugs to you

[Ness]

Thank you. That makes sense to see axon. Always worth a second opinion too. Hope you and everyone else has a lovely Christmas x

[Mcwelly]

No they don’t - I’m 4 yrs plus now, getting worse, getting nowhere and getting older- dumped by the nhs!

[Ness]

I feel your pain. Let’s hope the new year brings some answers and more help for us still suffering.

[Jules]

Hear, hear

[Skatkat]

I have every single one of your symptoms, I know this isn’t helpful but I am so pleased to see “Feel like breath not going alway to lungs” that’s exactly how I feel!! Like it’s escaping somewhere, sometimes I wonder if it’s going into my stomach because I also feel the need to burp a lot. Also the pain/stinging/numbness behind the top front teeth, I’ve never heard anyone say that before, that’s exactly what I’ve got.

I have slightly long styloid processes (approx 1cm too long each side) and some discontinuous calcification of the SH ligament. I saw Dr Hughes and he wasn’t convinced that this would be causing all of my symptoms.

I did get my symptoms after a period of intense stress, but I’ve definitely calmed down 90% at least from what I was like over the last 3 years but the symptoms haven’t got any better. I do still clench my jaw day and night though and I kind of feel like there’s no natural resting place for it. My tongue also doesn’t feel like it’s in the right place and sometimes the tip burns.

I also had a feeling of reduced sensation of breathing through my nose, like it is too open so I can’t really feel the air going through it properly. Sometimes I think that if I could just sort out my breathing everything else might go back to normal.

I don’t really know where to turn now, ideally I need a scan with contrast to see if anything it going on with the IJV but I need a doctors referral and that’s the difficult part, no one will take me seriously anymore (made worse by Dr Hughes not really giving a solid answer, now my GP just thinks I’m crazy).

For info I am also trying to investigate other causes:

Breathing pattern disorder

Binocular vision dysfunction (I’m 41 in a few weeks and have 4th weakness of the left eye causing my eyes to not line up properly. My symptoms get worse when I look at screens)

Possibly caused by needing reading glasses?

Some sort of stress/inability to relax that I am not in control or conscious of

Some sort of vitamin deficiency not yet tested for

Acid reflux possibly causing all of these symptoms?

Things I’ve ruled out:

Wisdom teeth
CCI/AAI
TMJ
Deficiency: iron, B12, D, magnesium, folate

Hope you find some answers soon.

[Jules]

It’s so tough when the doctors aren’t helpful @Skatkat , especially when symptoms aren’t clear cut … I’m glad that on here at least we can be believed and support each other

[Ness]

I feel that Hughes is going to say the same to me. He kinda said as much before requesting the scan. I was hoping he’d request with contrast so they could see any compression but it wasn’t! Every other doctor ie spinal, my gp and even physio have said well wait on the specialist your seeing before we do anything. Nobody wants to do anything and I very much feel like this maybe the scenario for a while yet. I totally get you looking at other stuff….ive done that too hoping I’ll find an answer or some relief by other means. This group is so understanding and helpful. I’m not made to feel like it’s all in my head or I’m a hypochondriac unlike 99% of docs do!

[Skatkat]

I totally understand, I got a phone call from Hughes and a final outcome hasn’t been sent to my GP. I called my GP to ask for a follow up with a local ENT after getting no real answers from Hughes. In the phone call he just said that he wasn’t 100% sure it was causing my symptoms but if I wanted the surgery I could have it. I don’t necessarily “want” the surgery because it comes with lots of risks, but if it is necessary I will have it. So I didn’t find it very helpful. I said I would have other things investigated (I got an implant for a gap where a tooth was missing, had my upper wisdom teeth out, saw someone about TMJ) but that all took a year. Now I’m a year on from seeing him and I went back to my GP to ask what next and they said I would have to go back to Hughes. The issue now is that I don’t think my insurance will pay for it as it says they don’t pay for “follow ups” (going to ask once Christmas is out of the way) and my GP just wants to say it’s anxiety/stress/tension. I feel like every time I see a specialist and they give me a “blah” answer it just proves to the GP that I’ve got anxiety, etc. I don’t have funds at the moment to self pay so I’m a bit stuck.

[Isaiah_40_31]

@Skatkat - My feeling is that if Dr. Hughes offered you surgery, even though he wasn’t totally convinced it would help, he must have felt there was at least some chance it would. He doesn’t seem to offer surgery to just anyone who thinks they have ES.

If your symptoms become too debilitating, & your other research doesn’t provide you with helpful solutions, it may be worth taking the risk of having ES surgery as it could very well reduce the intensity of your symptoms.

[Ness]

Ask your doctor to refer you back on NHS to Hughes
I totally get you with gp trying to put it down to anxiety etc. I’ve had 2 years of that from mine . I even started to question myself if it was & tbh I did and still do have it but that’s because I feel like I’m getting nowhere and now struggle even going out my door . Life is awful and they just don’t get it! Don’t give up though….keep trying and pestering them….you deserve the help and answers.

[Skatkat]

I did exactly the same, at one point so many people were saying anxiety/somatisation and I ended up believing it. In some ways that was a good thing because despite believing it and calming down quite a bit, my symptoms have remained or gotten worse so I think I can rule that out now. I wish I had gone for the surgery but I went for my consult with Dr Hughes through my medical insurance that I get through work and they need to have a definite diagnosis before they pay for the surgery. Im going to try to revisit this in the new year and hopefully get a follow up through my insurance.

[Hema]

How did you rule out cci or aai? Did you have any special tests? X