Hi everyone,
It’s been a while since I last posted. I have suspected eagles syndrome and am also due to have jaw surgery for sleep apnea. I outlined my symptoms in this post, but in a nutshell, I have very mild styloid-related symptoms (it doesn’t affect me day to day) mostly pertaining to the standard type. I do have a wooshing sound in my ear on the left side when I get up quickly sometimes (but only in those instances), perhaps indicating some mild compression, but other than that I don’t display the sorts of severe compression symptoms other users do with vascular ES.
From reading other posts here, I learned quickly of the long process of even just getting a consultation for ES in the U.K., and given that I needed to have a CBCT scan for my upcoming jaw surgery anyway, I decided to wait, get that scan, and see if my styloids were illuminated on that and go from there (as I have no official diagnosis yet).
Fast forward and my jaw surgery progress has taken a lot longer than expected. I still haven’t had the scan yet, and the surgeon I’ve decided to go with actually much prefers medical-grade CT scans for their accuracy in planning the movements for jaw surgery for sleep apnea. I’m aware that medical-grade CTs are the standard for diagnosing eagles, too, so I have a couple of questions regarding this.
Firstly, I see the gold standard for a thorough diagnosis seems to be to get both a regular CT and one with contrast. There’s obviously quite a lot of radiation for these scans, so if I can help it, ideally I’d just have the one scan which would be used for both planning my jaw surgery and enabling a surgeon later on down the line to pass judgment on my styloids.
The question is: do I need the contrast scan as well for the latter purpose? Obviously, I’d much rather just have one scan to lower the radiation dose, and considering the fact that if there is any compression it is very mild for me, I’m unsure of the cost/benefit ratio. Moreover, I’m not even certain my jaw surgeon’s referral will even permit the contrast scan, so there’s that. As I said, the vast majority of my symptoms fall into the common-type category – have any of you been able to have a styloidectomy with a standard CT scan only? I’d rather just have the one scan, get the op, and hope that the wooshing is gone afterward. I mean they’re meant to excise back to the skull base and remove all ligaments anyway, regardless of whether or not you have common or vascular ES.
Secondly, why do they do both contrast and standard? I’m guessing the contrast scan obscures tissue so they also need the standard one?
On another note, I also took the liberty of quizzing my maxfax surgeon about Eagles Syndrome. I explained that, based on my symptoms and speaking to people on here, it seemed highly likely I was experiencing at least some elongated-styloid-related problems. He says he does see people with elongated steroids sometimes, and in the event that they or calcified ligaments get in the way of surgery, he actually partially or entirely removes them intraorally while he’s performing the main surgery (which is all located within close proximity).
So I’m imagining an ideal situation here: I have the one scan, that can be used to diagnose both eagles syndrome and be used to perform my jaw surgery, and my surgeon may actually be able to perform a styloidectomy for me all within the one operation. Mainly, this would enable me to not have to have an extra contrast scan and also allow me to bypass the horrendously laborious system we have here of actually getting an Eagle’s Syndrome diagnosis.
Even if my surgeon doesn’t see fit to do anything to the styloids, I’m hoping I can take that CT scan to get an ES diagnosis from one of the surgeons here (my jaw surgery will be in America), and pursue the styloidectomy the usual way, without having to go down a further lengthy investigative track regarding the vascular symptoms.
It’s kind of a weird one for me because I do feel like somewhat of an outlier, making it difficult to know where I stand with getting the ES situation resolved. Virtually everyone – if not everyone – on here is having a pretty excruciating experience with ES both mentally and physically, where for me, it’s something I’ve identified, but I’m not in daily pain with it – just some muscular sort of pain, mild tinnitus, and then the wooshing sometimes when I get up (I can feel the steroids bi laterally in my tonsil area and on the left side – the symptomatic side – I can feel the actual bone deep in my jaw angle).
I feel like even if I go through all this rigmarole of getting diagnosis through the UK systom, they might not even agree to operate on me anyway (I know some people have been refused surgery, and those are people with way worse symptoms than I have).
My reasons for even being concerned about this in the first place isn’t really because of any problems I have now, but the fact that ES isn’t a self-limiting process: I’m 27 years old now, and as I get older, it could be that I develop full-blown ES. Moreover, although this wooshing thing I get is mild, I do worry about the effect compression can have on the brain, like expediting long-term cognitive decline as has been shown in studies and mentioned here.
I apologize for what is a bit of a rambling post, but whenever I post here members are very articulate in their insights, so I appreciate any input on anything I’ve written. Thanks!