Two months post surgery. Still having nerve issues. But the way they come and go (worse after PT or other manipulation) gives me confidence that it’s a surgery issue and they will settle down over time. I have days when it’s gone, then it usually comes back after PT or massage work the area. Dr. Hepworth prescribed Lyrica to see if that settles it down, but I haven’t started it yet. He said the pattern sounds like the glossopharyngeal nerve, which is common in Eagle and right where he was working. Said he’d be concerned if I still had it in November, but not now.
Also, interesting update: I saw him on Monday. Asked him what was causing the 60% blockage of my jugular. He said it was fibrous tissue, “gristle” as he called it. Not the styloid at all. Although he said the styloid had to go because it was “spindly.” I thought that was interesting.
No decision yet on other side surgery, set for November 1. I see him in 6 weeks to revisit that.
Have faith, all you considering surgery. Definitely worth it in my case!!
I’m so glad you’re doing very well, @Bopper! Guess you showed your brother, eh!?
It makes sense that if your glossopharyngeal nerve was upset by surgery & is trying to recover that any excess stimulation now i.e. manipulation of any kind, would stir it up & cause symptoms. It might be worthwhile leaving that area alone for another month or two so the nerve gets a good chance to settle.
Would be interesting to know what caused the fibrous tissue, maybe the inflammation from the styloid? But very good that you feel surgery was worth it, and hope that the nerve pain settles down soon…have you got pain &/or jugular compression on the other side?
He didn’t say definitively, but said that Lyme disease can be one possible cause. I had one doctor (who actually owns Immuno-e, Dr. Hepworth’s practice) diagnose me with Lyme a few years ago, but that diagnosis is so controversial that I didn’t know what to make of it. Might be worth following up with him.
I don’t know if I have compression on the other side, but I know I have a calcified ligament, which causes ear pain. And I have tinnitus, but who knows what is causing that!
I also have Lyme disease. I tried heavy heavy antibiotics for two years and no change. It’s extremely frustrating being diagnosed with so many things because it’s hard to navigate what is causing what. I feel your frustrations.
Lyme is so weird. I tested negative on a couple of tests, then positive on a different one. But most of the doctors I know don’t trust the one that read positive, so they say I don’t have it. Not too excited about the heavy antibiotics, so I’ve just been kind of leaving it alone.
