Seeking advice for chronic ear, jaw/tooth pain. Its been 4 years

Hi all. I am 27F, from India with chronic facial pain since 4-5 years on & off. It started as an impacted wisdom tooth pain with which i suffered for 1 year before extraction. Then it relapsed for a couple of months after surgery and lasted for 6 months (during which i got my upper wisdom teeth also removed thinking they were causing pain.) After a gap of 1 year it relapsed again and this flare-up has lasted for 10 months till date. I have had to quit my job, my life is at a complete stand still. Please note I have been to 10-15 doctors who have given myriad opinions and treatments. I have been to 3 TMJ specialists, 3-4 oral surgeons, ENT as well. I have diagnoses of possible TMD, trigeminal neuralgia and tension headaches. I have tried 2 splints which have done nothing. I have tried trigger point injections which haven’t helped. I have tried muscle relaxants, gabapentin, TCAs, NSAIDs. I have tried intra-oral physiotherapy and IFT, TENS etc. You name it. My labs are all contradictory with 2 brain MRIs coming out normal. My TMJ MRI also had no findings for the left joint and slight degeneration in right joint (i have no pain on this side). And the TMJ CBCT showcased both degenerated condyles and arthritic changes. Because of the contradictory reports I have been dismissed by multiple doctors with comments that my symptoms are just stress (whilst i am jobless, in my parents house with nothing to do - i wonder what stress i hold apart from the disease).
SYMPTOMS –

  1. Extreme inner ear pain and pain behind the ear till the left angle of jaw (very tender area); pressure & stiffness, itching, blocked feeling inside left ear with occasional tinnitus. High sensitivity to loud sounds, airplane cabin pressure.
  2. Severe radiating tooth pain at left lower mandible wisdom tooth extraction site in the toothline/gum area. The gum area gets swollen and the pain feels like a burning ache.
    Any kind of jaw activity (brushing, chewing, talking) initiates the pain.
  3. Limited mouth opening (2 fingers) with stretching/crackling sounds (from the cheek area) & deviation of lower jaw towards right side when trying to open.
  4. Uncontrolled jaw closure/facial twitching – jaw just snaps shut/spasms/catches on its own.
  5. Burning pain on left side of the tongue and constant sore throat, pain while swallowing.
  6. Headache on left side of head – temple area, scalp & base of the skull near the neck.
  7. Neck pain, shoulder pain (trapezius), upper back pain on left side.
    I request the members here if anyone could give some direction as to what to do? If its TMD - what else can i try given my symptoms, or could it just be Trigeminal neuralgia or should I get tested for Eagle’s syndrome (although an ENT did suspect this but the reverse towns view xray showcased only slightly elongated styloid so i was dismissed).

Some of your symptoms can be caused by ES, pain swallowing is a very common one, and also TN- that’s one of the nerves commonly affected, along with the facial nerve , and the accessory nerve which can cause shoulder and trap pain. The glossopharyngeal nerve can also be affected by the styloids and can cause the pain swallowing and throat pain and ear pain. Other ear nerves can also be affected, and a blocked/ full feeling is quite common, sometimes if there’s compression of the jugular veins. There are some good videos on YouTube called ‘Two Minute Neuroscience’; you could watch those for the nerves and see if that sounds like your pain.
If you’re able to get a CT from the head to the hyoid bone, with contrast if possible, & ask for it to be assessed for Eagles Syndrome, so look at the length, width and angle of the styloids, and to look for any calcifications of the stylo-hyoid ligaments. If you can get copies of any CTs that would be helpful. If you can get a copy of the x-ray feel free to post it on here- doctors unfortunately don’t agree on what the ‘average’ ; length of styloids is, anything from 1.5cm- 4cms! Also radiologists don’t always look at the angle and width of the styloids, and also if there is calcification of the ligaments…
By the sound of your symptoms, I would think it’s worth looking into ES as a possibility.

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Hi @deeyteey - I agree with everything @Jules said. I will add links here to a couple of posts she made regarding symptoms & their causes. Use the magnifying glass image in the upper right of this page to search “trigeminal nerve images” as many have been posted on our forum showing the areas the TN covers. That can help you understand what’s causing pain in your face, jaw & teeth. There are also images of the other nerves she mentioned on our forum or via Google. The video series covers each of the 12 cranial nerves & 6-7 of those are commonly irritated by ES which is what causes such wide ranging symptoms.

I expect you’ve received a link to our Doctors List so choosing to see a doctor from there will give you a better chance of an accurate diagnosis.

Also as @Jules mentioned, sometimes styloid length isn’t what causes symptoms, it’s other physcial features of the styloid that are the problem.

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