I have been lurking on the site for a bit and am writing now to introduce myself and – at the suggestion of Isaiah and Jules – to share some of my story in case it is helpful to others. I am right now 8 days out from removal of my left styloid and much of the stylohyoid ligament, and I was so pleased to find that most all of my symptoms were gone immediately on waking from the surgery.
I started to have vague and fairly mild symptoms about a year ago, and then things escalated rapidly. At first I had inner ear pain that didn’t quite feel like an ear infection but was close enough that I eventually sought treatment. Then lower jaw discomfort came to the party, and when I was found to need a root canal I thought that must explain everything, but that procedure failed to take care of the problem (although I did in fact need the root canal). Eventually I developed a terrible suffocating feeling in my left neck that I could only prevent by maintaining an extremely rigid posture with my chin level and facing straight ahead. Turning my head to look at different people around a table (unless I swiveled my entire body) or looking up and down to read from something below eye level brought on symptoms, as did anything that elevated my heart rate. I had a numb, tingly feeling in all 3 distributions of the trigeminal nerve (jaw, cheek, eye) that spread across my left face and stopped abruptly at midline; glossopharyngeal symptoms (feeling that something was stuck in my throat on the left); vagal nerve (reduced gag reflex and – I only learned this after it stopped abruptly post-surgery – bloating in my abdomen). Sometimes my voice sounded abnormal to me, although others did not hear any change. Gabapentin helped quite a bit, but it did not come close to removing the symptoms.
My neck CT showed severe stenosis of the internal jugular that was read by the radiologist as being at the level of the styloid. Although the stenosis was originally felt to be unrelated to my symptoms, having the styloid mentioned in the report was extremely helpful in terms of my own reading and because one internist was aware that people can get odd syndromes related to the styloid. The pieces that slowed diagnosis down quite a bit were the absence of sharp pain, the fact that my styloid was not palpable from inside my mouth, and the finding that the styloid length and degree of calcification were much worse on the non-symptomatic side. Even immediately before the surgery, the ENT did not feel entirely confident that the procedure was going to treat most/all of the symptoms.
When I woke up from surgery, all of the left-sided vascular and neurologic symptoms were gone. It is miraculous to be able to focus on what I am doing rather than on my body position. I have probably a 6-inch incision that goes down the inside of my ear and then curves around the side of my throat, but it is healing well. I am numb in my entire outer ear and about half the left side of my face, and the left side of my lower lip is “doing its own thing,” but I am fortunate to be healing quickly. Discharged home from hospital same day as the surgery on ibuprofen and Tylenol. Returned to work for part of a day 4th day post-op and full-time 5th day, although this would never have been possible if I had a physically intensive job, and I definitely learned when I was pushing myself too much and had to slow down. Now I’m starting to have a little more pain, although not terrible, as nerves are making their healing progress known. I remain aware of some right-sided symptoms, but they are currently minor.
In addition to reading as much as possible, it was very helpful to me to keep a log of when I was experiencing symptoms, because at first it felt like a bizarre, overwhelming number of different problems and I did not sufficiently understand what the triggers were or which specific symptoms came on simultaneously. For example, I first thought I was having swallowing problems because I felt something stuck in my throat every time I ate, but then I learned that this feeling was present even when not eating and that my swallowing itself was fine. I also thought I had increased symptoms with air pressure changes because I felt much worse while flying (which is what led to the incorrect ear infection idea). As I got more experience, I learned that flying itself was irrelevant and the problem was sitting in an airplane (or car or chair) seat that put me in a tipped back position rather than straight upright. Understanding the mechanics of the symptoms helped me to communicate with the doctors more accurately and to avoid experiencing as many symptoms (although there was definitely a limited degree to which I could control them).
Having read many of your stories, I am humbled by how many are struggling and how fortunate I have been with my own journey. It felt to me like it took absolutely forever to treat the problem I was having because every day was so challenging, but I recognize that for many of you mine will sound like a tiny blip of a timeline in comparison to your own.