Hi all,
After waiting for an opening I finally got into Mayo Clinic under the umbrella of neurology for trigeminal neuralgia. ( I had already been rejected for ES so wanted to get in another way.) The trigeminal nerve is right around the base of the ear and my cranio-sacral therapist has been working on that nerve for years, blaming it for much of my chronic pain.
SO ... I get to the appointment with my sweet 81 year old father and the doctor says, right off the bat, that I do not have trigeminal neuralgia. A standard case would be having episodes of excruciating, lightening-like pain that brings you to your knees. I get these, but thankfully less than a dozen a year. They literally feel like you got struck my lightening and last a minute or two.
I told the doctor I had these too and that I could live with them but that it was the chronic non-stop pain in my jaw area that was killing me. Although she had all my scans/MRI's (which she said she'd already looked at) I took out the picture from my cone X-Ray showing my 6.5 and 5.8 styloids. I wondered whether, if they were pressing against the nerves, wouldn't they cause pain?
Then she got all stuffy and said the nerve I was talking about would be the greater auricular nerve. It starts mid-throat then goes up, splitting tightly around the base of the ear. Again, I say fine, wouldn't that nerve cause pain if compressed.
She finally said that perhaps a nerve block of the greater auricular would help and also said I had arthritis at C2-C3 and maybe shots there would help.
++ In an effort to try to summarize this, I'll just say I left 2 days later very disheartened by my other appointments. My father got home and called around and insisted I come up to NYC (I live in the DC area) and see specialists at NYU.
I did that the week before last. The four appointments went as follows:
1. The ENT said I did not have the typical ES symptoms. I have no pain when turning/twisting my neck (though I can feel them, but there is no discomfort) and no problems swallowing. He therefore said he didn't think surgery would help at all. He surmised that I have TMJ.
2. The neurologist did more MRI's and found that the styloids were not compressing the carotid and that there was no evidence of a vascular EDS.
3. The dental expert said I probably had TMJ (MRI later verified severe thinning meniscus and a tear on the right, moderate meniscus thinning on the left) but said probably ES, EDS and Fibromyalgia all contributed. He's supposed to call me back to tell me what the next step is, likely wearing an appliance at night (which I already did for 10+ years ... fitted by an orthodontist at a cost of $1,200)
4. The geneticist said I didn't have a clear case of EDS and my pain was from the four above-named issues.
Honestly, I end up thinking I am cuckoo until I get back to this site. Does anyone else have pain in their jaw/behind the ear from the styloids or am I off base?
I honestly don't care what it's called, I just want the pain to go away. None of the doctors thought that removing the styloid would help. I did see a dr. in Pittsburgh almost a year ago who was willing to do the surgery but he said that he couldn't promise it would help. First, he'd go in at the neck and then go up, since my styloids are so long. Second, he thought that it's been so long (20 years that I've been in pain) that the damage was already done to the nerves. (He didn't name which ones).
So sorry to dump all of this. Guess I'm needing a hug!
I did get some good advice, a book called Hypermobility, Fibromyalgia and Chronic Pain, edited by Hakim, Keer and Grahame. It's not cheap, over $60 on Amazon. Sadly, it's over my head; it's written for health care professionals. I'd be happy to lend to anyone wanting to read it; maybe we can pass it around this group.
Be well all,
Hopeful