I have a collection of symptoms that seem to be related to Eagle Syndrome, specifically the vascular type. Initially I had surgery with a local ENT who had never before treated ES. He did an external procedure to shorten the styloid.
The problem was that my symptoms are primarily vascular, as if there is compression or irritation of the carotid sinus and jugular vein, among other anatomic structures in my neck. These did not improve after surgery, in fact they may have gotten worse. I feel swelling behind my jaw, around my tongue and in my sinus area.
In fact many symptoms seem like what people describe a carotid dissection to be. I have horrible headaches and swelling in my head, a pulsating throbbing sensation behind my jaw. My vision is impaired at times, and my arms become heavy and weak. I have lost my sense of taste and smell.
All of this gets worse upon turning my neck only slightly in any direction. I do feel like there is a foreign body in my throat around my hyoid and around my tonsil area.
Complicating matters is another doctor I have seen believes I have Thoracic Outlet compression in my chest area which could be causing some vascular compression of the subclavian vein. But most believe that my head and neck symptoms are unlikely to be caused my this and are a separate issue.
So my question is, have any of you had a procedure to shorten the styloid process, only to have to repeat the procedure because they didn't remove enough of the bone?
If the styloid or stylo hyoid ligament are causing compression or irritation to the carotid sinus or other vascular structures in my face, then I would only see relief if the bone is completely removed from the artery or structures being impinged upon.
Right now, both my styloid processes are around 2.6cm but there is some calcification of the ligament at the attachment to the hyoid bone.
Basically every doctor I have seen (and I have seen a few with actual experience with Eagle Syndrome, however limited) have said that styloid processes of the length they are currently (after the first procedure) are very unlikely to cause any issues and they don't want to do any more surgery.
None of them seem to notice or care about the calcification at the attachment to the hyoid. I have read plenty about Styloids of a "normal" length that have caused significant problems. And I have read about syndromes similar to Eagles where the hyoid bone or calcified attachment of the ligament cause problems.
It might not be precisely Eagle syndrome. But it is the vascular symptoms that I am concerned with. Somewhere between the upper cervical vertebrae, the styloid process and the hyoid bone there is, or was, structures which have caused significant pain and compression of the carotid sinus, or other structures in my neck.
I don't know what to do or who to seek out to help me. Maybe an Eagle Syndrome "expert" is not the right approach. I know there are risks to a second surgery but when you have the sort of cerebral vascular symptoms, possibly related to compression, then you have to do something about them!
I live in California, by the way. And I cannot travel across the country at this time. I'm just looking for any similar experiences with vascular symptoms not being fixed with one surgery. Or another approach to getting help rather than going from one medical hospital ENT department to the next.
Thanks. I hope someone here can help me in some way!