So, the dilemma is that I have had a completely normal CT of head and neck orderd by my ENT cranial specialist (minus serious sinus issues which he fixed surgically in July), and a head MRV and MRA that he has not yet seen but that the radiologist said were normal. However, for the last about 2 years I have had severe and constant daily symptoms of what seems to be, to a T other than the lack of imaging results, Eagles Syndrome. It began shortly after I had my Tonsillectomy in 2017. It was necessary, I had strep over 20 times, but I have recently been made aware that a form of Eagles Syndrome can develop after tonsillectomy that is different than the kind common in EDS patients where the styloid process itself elongates. I am wondering if this is possibly not as visible on CT, or doesn't cause the same jugular stenosis? If there is any possibility with negative imaging it could still explain my problem, or if there is another disorder with symptoms similar to Eagles Syndrome that might?
Essentially, I have daily, near constant pain where my neck meets my jaw on the left side, about an inch and a half below my ear. It is just in front and below where my jaw's corner is. There is a small, enlarged area/lump there that is not on the right side, that has been there well over a year or more. My craniosacral physical therapist, who is very knowledgeable about hypermobility and my symptoms, said that every time she works on my neck where it hurts, my styloid feels inflamed and displaced, and my hyoid is often screwed up as well. I had a second well regarded therapist second this recently as well. The pain radiates up towards my ear, thought not terribly, and every once in a while radiates down almost tingly to my collarbone, nerve pain like. Ice is somewhat helpful but quite frankly nothing really helps it. Massage helps some of the tension around it but not the pain itself. So far nothing anyone has done has helped. It is worse with turning my head to that side. It sometimes hurts to swallow but not most often.
I have ehlers danlos syndrome. I was reading that the type of Eagles Syndrome that can occur after tonsillectomy is caused by abnormal healing. Medscape says that "After tonsillectomy some people develop calcium deposits on the stylohyoid ligament, which attaches to the styloid process. Most people do not develop symptoms, but some may experience pain and other unusual sensations." I scar atrophically and severely from very light injury. I am wondering if this could explain my pain?? Do any of you have experience with this and does my pain sound similar?
Truly this is one of the most persistent pains I have and it is all day every day. It is so tiring and that entire half of my neck feels sore and screwed up as a result of how I hold my neck due to the pain. Thank you all in advance for any advice you have.