My husband saw a local ENT today, which wasn’t horrible but also went as many on here had led us to prepare for. He also has an appointment with a specialist in Dallas (Dr. Chan-Levene) in late April. At this point it felt like we were just making sure there wasn’t something else being missed or overlooked, while we wait to see Dr. Chan. He did refer to ES as “voodoo medicine” and made it sound very 50/50 on a clear diagnosis and successful treatment. Apparently he has performed two surgeries for patients convinced this would solve their ES symptoms (he didn’t mention if it helped them). He did them through the throat (internally) and he stated that is how the surgery is done. That was one of the red flags, as I have seen so many of you that say surgeons typically go from the outside of the neck for maximum clarity in addressing the styloid removal.
He listened. Seems convinced my husband’s GERD was totally unrelated to the styloids being elongated and calcified. I brought up the jugular form of ES, but he didn’t seem familiar. The most interesting thing for us, was when he reached in my husband’s throat to feel the styloids on either side. In addition to the obvious discomfort was the surge of pain that immediately affected his upper shoulders and neck. That did not dissipate until about an hour after we left his office. He throat hurt a tiny bit more but it was the shoulder pain that was most excruciating afterwards.
he did urge us to keep and attend the appointment with Dr. Chan in April and acknowledged that someone with more specific training in something so rare and unknown, would be the way to go.
Sounds like it was a helpful appointment for your husband to go to, it sounds like the pain he had when the styloids were pushed could be a confirmation for you?
Good that even though he wasn’t totally on the ball with ES he encouraged you to see Dr Chan as well! I hope that the waiting time until April goes quickly for you both…
@Acliff - The shoulder pain your husband experienced during his styloid exam seems to indicate that his spinal accessory nerve was “upset” by the exam. It’s one of the 7 cranial nerves that can become irritated by elongated styloids. We have quite a number of members who have or had shoulder pain as an ES symptom. I am one of those.
I felt like I have read many people mention shoulder and neck pain as a symptom. Did surgery resolve your issues completely? Did you experience that pain when the styloids were manually messed with? My husband Says that today if he coughs or sneezes, pain radiates across his shoulders and neck. He is not happy that he is left with even more pain since the ent appt yesterday and is hoping this is temporary. He has had pain in this areas from start but not this frequent or consistent.
@Acliff - Yes, surgery resolved my shoulder issues. For some people they hang on for a while post op while the accessory nerve recovers but for others those symptoms are gone when they wake up from surgery.