Hi all, I’m looking for some guidance and have a long history with Eagle’s. I was diagnosed in 2017 via CT, after two years of unexplained symptoms, primarily a constant bilateral “poking” behind my palatine tonsils. It feels like two tusks pushing against the sides of my tongue, with significant muscle tension and occasional dysphonia as a result. Before surgery, I also had occasional vascular and non-vascular tinnitus on right side. In 2017 I had two external surgeries, first on the right (there was vascular compression on IJV, and upon surgery they found there was a taught ligament wrapped around the styloid) then on the left 3 months later. I was overjoyed to have essentially found some sort of cause of my awful symptom, especially being a singer and speech pathologist. So, after surgery I gave it some time for nerves to heal so I’d know the true effect from the surgery. But it’s 8 years later, and I’m on this site, so evidently I am not out of the woods.
I do think the surgeries were helpful; I still have the feeling of poking in my throat, though I am far less frequently tense and dysphonic. Sometimes I feel a “pulsing”/slight pinch at the tip of the “tusk” (so hard to explain, but you all know how that is.) Essentially, I have a new stable baseline, but it still significantly affects my quality of life. I may be singing professionally if it weren’t for this ordeal, honestly. Every few years I get up the wherewithal to talk to another doctor for the 437th time…just to be told no again. In 2022 I even had my tonsils removed, considering when the doctor pressed directly on my tonsils it triggered my symptom, just to see if it was helpful. It wasn’t, BUT I had a bleed on the right side on the 6th and 13th day after recovery, which is extremely rare. Seems it could be related to me.
I’m on the east coast, so my next consideration is contacting Dr Cognetti for a potential revision. Before I do so I want to have a plausible case, if there is one. The latest imaging I have is from 2021, and unfortunately the report is completely unhelpful, saying: “Compared to the preoperative study the tip of both styloid processes have been removed. The right was longer than the left they are both about equal in length now. Although vascular detail is limited without IV contrast, the encroachment on the internal jugular vein seen on the right in 2017 is no longer apparent.”
I only have 2D images of the CT scan, and for some reason I can’t figure out how to post them here, but honestly they look pretty unremarkable to me…back to having unexplained symptoms I guess. I don’t currently have my pre-op CT from 2017 but I’m in the process of getting it. I know I’d look like an idiot and possibly discredit myself by just bringing something that says I’m normal to a specialist like that. But again, my symptom is still very real. So I’m wondering…
Should I have more updated imaging done before I contact him? Perhaps a CT with contrast, or something more sensitive? I don’t know how advantageous that difference would be.
My symptom is very much a “foreign body” sensation. Almost like someone always has a light chokehold on me, and there’s something in my throat that shouldn’t be. Sometimes when I press hard on my tonsillar fossa with my finger it “pushes” away the pain for a moment. Could it be possible the symptoms have to do with the angles of the styloids at this point (growing medially) as opposed to the length?
Any other advice?
Thank you so so much for reading and considering. This forum was a godsend to me when I was first diagnosed, so I hope I can continue my road to recovery here!