Wanting to learn more to better understand…

I’m curious how many here had issues/got ES from a surgery or trauma? When I research it says tonsillectomy or other surgical trauma is usually the cause. However, I had my tonsils taken out when I was three years old. I had total TMJ prosthetics put in almost 13 years ago. I’m just wondering if this is something I’ve had since I was three and symptoms are just now evolving due to aging? I thought I read somewhere that the symptoms don’t progress or get worse but mine have. It’s just so odd to me that my symptoms started very gradual and out of the blue (meaning nothing to cause trauma or issues) and have continued to progress.

Are there other conditions or causes anyone has learned about or found to be connected?

I had a tonsillectomy at age 4, a skull fracture & concussion at age 13, & a whiplash injury at age 23. I also had braces when I was 16 to straighten my teeth, & again when I was in my late 40s to realign my bite to help sort out some uncomfy TMJD issues which had developed. My ES symptoms possibly initiated w/ benign positional vertigo & a year or more later choking on food when swallowing. It progressed a year beyond that to pain in the front of my neck which I could incite by poking a hard lump I found under the left side of my lower jaw. The lump was concerning & is what eventually got me a referral to an ENT who happened to be familiar with ES. Once I was diagnosed & found this forum, I began to put the pieces (my symptoms) together & saw that they could all be related to ES. Thus you can see that symptoms can “creep up” or for some of our members they just came on overnight.

Scar tissue development from tonsillectomy is what Dr. Eagle thought caused ES, but it has since been demonstrated that is only one possible cause. Head, neck, or throat injuries, heading the ball while playing soccer, TMJD, & even realignment of teeth/bite by braces are all possible causes of ES. Hormone imbalance i.e. dysfunction of the parathyroid glands & even genetics may contribute. We have several members where ES seems to be familial i.e. one parent has it plus one or more of his/her children.

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Interesting about the parathyroid. My rheumatologist just ordered labs and included this. I do have Hashimotos and the scan that revealed the ossified stylohyoid ligament also revealed ossification of the superior horn of the thyroid (which is common with aging), as well as heterotopic bone in the jaw space of my affected side.

I’ve seen a lot of people comment about a hard lump under the jaw just behind the ear lobe. I brought this to my PCP’s attention this week. I’ve got a large one just below the ear lobe that’s been there for about two years. It’s tender and not a lymph node.


Good job advocating for yourself w/ your PCP! It was my OBGYN who felt my hard lump & sent me to an ENT. :joy: My PCP just Rxed antibiotics & sent me on my way.

I had a lump in the area under my ear on the right side, but the one that I felt before I was diagnosed was in the soft tissue under the left lower jaw just inside of the curve of the jaw bone. It was hard & bumpy i.e. not smooth.

The parathyroid controls the calcium levels in our blood & a few of our members who’ve had parathyroid dysfunction had high blood calcium levels & questioned whether that could have caused their styloid elongation.

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I presume my ES was caused by a whiplash injury (or maybe the brutal traction & manipulation that a doctor did to fix the injury which made my neck alot more painful!). I have an identical twin & she doesn’t have ES…my symptoms were similar to @Isaiah_40_31 in that they gradually worsened, I had a salivary gland stone and toothache/ jaw pain and was diagnosed when they did a scan for that. When I learnt more about ES on here it made sense that some of the neck pain, ear pain & other symptoms I’d had for years were due to the styloids. They’ve improved since surgery.

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