Symptom Confusion, first ENT appointment unhelpful

General
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Hi Guys, recently diagnosed with ES after unusual symptoms Doctors couldn’t link together and CT scan.

Symptoms I’ve recently had pop up in the last 4 months (kind of in chronological order):

  • Started with noticing some pain directly under left ear and behind jaw bone, no pain unless pressure applied (mainly noticed when edge of pillow was pushing into that area)

  • Left arm nerve pain occasionally, tingling in thumb, pointer, middle finger at times. Often waking from sleep with pinky being numb either on the left or right depending on which side I was sleeping on

  • Dry tongue, almost like it was burnt after eating hot food, weird tasting saliva (lasted about 2 weeks, comes and goes)

  • Pain under ear no longer just when pressure applied, can last for hours at a time, feels like a tightness going from base of ear all the way down side of neck into collarbone

  • Jaw Pain

  • Occasionally waking up with ringing in left ear

  • Collarbone pain

  • Throat pain between and slightly above collarbones, difficulty swallowing, made worse by exercise

  • Nerve ‘pricks’ in toes and fingers sometimes, like at the base of the nail where it joins skin

Symptoms I’ve had previously and continue to have that may be linked?:

  • Regular headaches, occasional migraines

  • Regular head ‘pain’, not like a head ache, more like a pressure build up

I’ve had 2 MRIs, one last year and one about 7 years ago due to this and neither show abnormalities.

After getting a CT scan it showed my left styloid to be 6.8cm long and my right to be 6.2cm. I believe this is quite long.

My doctor has never seen it before so was admittingly not much help which is fine, I went to an ENT consult with who he referred me to but the ENT has only seen it twice, never operated and hasnt read up on it in years. He also was very focused on my throat pain as the only symptom that matters, seemed to really brush off everything else and said he couldn’t be confident in linking anything even though from my research headaches for example seem to be a common symptom.

I’ve decided I need to seek out an ENT with experience in it and found Dr Elliot, (Sydney, Australia). I’ve seen him mentioned in the forums here as well. Im currently waiting on my Doctor to amend his referral to Dr Elliot so I can book in.

I guess the main thing Im looking for here is if anyone else has linked these symptoms to ES, and I guess secondary to that, while I experience pain and discomfort, its not to the level that I cannot function or am seriously affected by it, and then knowing just how long my styloids are its given me a bit of imposter syndrome about it, especially since the main symptoms have all come on so quickly in the last 4 months (another thing that the ENT questioned) so Im wondering if others have had this sudden onset also.

Thanks

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Yes, lots of your symptoms can be caused by ES, here’s a link to the post about common symptoms and possible explanations:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And a member did a survey a while ago so here’s a link:
Survey Results - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
If you have a read of those you’ll see that most of your symptoms have been experienced by others!
The onset of symptoms varies alot- some members have found their come on literally overnight, laying wrong or having an injury, even laughing or sneezing can bring the symptoms on suddenly. Others find theirs come on slowly, & sometimes it’s only after they’re diagnosed & read up on ES that they realise they’ve had them for years. The skull base & neck is such a tight space, that even a small growth (length or width) or change of angle slightly can then bring the styloids into contact with nerves or blood vessels. One of the openings in the skull base next to where the styloids are is where several nerves and the internal Jugular vein exit the brain, so it’s not surprising that it’s easy for them to compress or irritate structures…Your styloids are pretty long (doctors don’t agree on the ‘average’, but it’s considered anywhere between 1.5-4cms long, so yours are well over that). The thickness and the angle cause symptoms too.
I had a gradual build up of symptoms- jaw, ear, tooth pain, pain turning neck- but the vascular symptoms came on suddenly, I was diagnosed with a prolapsed disc C5-C6, which I think shifted things slightly causing jugular vein compression. I have never had the throat pain or pain swallowing which are the two most common symptoms!
I hope that Dr Elliot can help you, I think given your symptoms & length of styloids it’s certainly worth looking into ES.

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