Hello everyone. I love this forum as it has been very helpful. I had surgery on January 25th with Dr Annino in Boston Massachusetts. My left stylohyoid ligament was calcified and measured 6.9 cm. He removed 2.9 cm in the middle and assured me that it would not grow back. He has been doing this for 18 years with about two or three cases a year and says that he has never seen it grow back. He equates it to cutting a rope essentially. I literally asked him three times as I know so many of you have said to take it down to the skull base. Just wondering about any feedback on this. I will be having the right side done in a few months as that one is calcified as well. He likes to avoid the area near the skull base as it is around so many nerves. Post-op was quite easy. Just a lot of swelling as it was external, but I didn’t have much trouble eating once the swelling went went down.
Hi! Glad you’re doing so well! I had my first side done January 10th by my beloved (I do practically love the man for how he improved my life!) surgeon Dr. Dedhia in Atlanta. His words were almost identical to what you were told. He called it an “untethering”. I feel lucky he got 3 cm out because he said he stops when he sees carotid artery/jugular territory so I wasn’t expecting a lot to come our, just the cut like you said. It took a lot of trust but his approach worked for me in particular because my swallow was better instantly. I’ve had an unfortunate tongue issue post op but I’m told it’s nerves reconnecting and will resolve. I’m hoping to have the other side done in May. I think you found a good doctor. How have your symptoms improved?
As you noted, the idea behind complete removal of the styloid process(es) & s-h ligament(s) is to prevent regrowth, however, there are cases where the styloid cannot be removed to the skull base due to nerve placement or involvement. Regrowth is most often seen in people who’ve only just had the tips of the styloids cut off i.e. a minimal amount has been removed. There have been a couple of cases of regrowth where a larger portion of the styloid & ligament have been removed but those are rare.
It does sound like Dr. Annino is doing good work. It seems he’s seen good results over the years with the method he uses. To reassure you, Dr. Samji did my surgeries. He is a proponent of “take it all out from hyoid to skull base”. My right glossopharyngeal nerve was wrapped around my right styloid process like a vine & as a result, he was not able to cut that styloid back to my skull base. He had to leave 1" of styloid process in place to keep from damaging the nerve permanently. It’s been 4.5 years since I had that surgery, & I’ve had no symptoms of regrowth & have no fear of that happening.
It sounds like you’re in very good hands. I’m glad you’re dong so well this soon after surgery.
I no longer have pain or a deep itchy feeling deep in the ear. My jaw no longer hurts, feel tight, or snap. No more headache pain on that side either. My neck no longer feels really stiff on that side. I no longer have to tweak my neck around to loosen it up. So much better. Will see him on April 8th to hopefully plan surgery for the other side. Glad to hear that you are doing great as well.
Thank you so much for the reassurance! My scar is feeling pretty fixed and i have an appointment with some people who do The John Barnes method of myofascial relief therapy. They will be able to loosen the scar tissue up. They were able to loosen the scar tissue up after i had shoulder surgery. Had fractured the humeral head.
I do have a small amount of swelling at the surgical site and numbness under my chin, but am confident that it will resolve in time. Thank you again to all of you for sharing your stories.
I’m glad you have a resource to help you with your scar tissue. I know a lot of people have trouble with that post op. Fortunately, that’s one thing I didn’t have to deal with. I’m so thankful for the many things that went “right” for me & for the final results of ES surgery - getting my life back & being able to function normally. This did take time though - probably about 1.5 years. But don’t be alarmed by that. I felt pretty doggone good by the end of the second month after each surgery.
So glad to hear how well you are doing! This site is so helpful in allowing us to know to be patient and that things will continue to improve.
Yes, ES & the surgery are both huge lessons in patience!!! So glad I can share the good things that come to those who wait!
Hi SewMomma, I see you had a surgeon in Atlanta. Are you aware of ES docs in South Georgia?
Gosh I’m so disappointed that the wonderful surgeon at Emory is leaving. I checked on my surgery appointment the other day for May 30th and his coordinator said I got one of his last surgical dates before he leaves at the end of June.
The only other place I ever considered was Georgia Medical College. If you look at their website, there are some very experienced ENTs on there and I was going to call them to see if any of them had performed Eagle syndrome surgery but I never needed to go there after I found Emory. I tend to lean toward academic institutions for big things like this so Emory and MCG would be the two in the state. Oh and I was willing to drive to Birmingham because an ENT at UAB does the surgery too but he was out of my insurance network. They could tell you his name when you call their appointment line because his name comes up when you mention ES. Maybe Florida is closer to you than either of these though.
Keep us posted on your search for a surgeon. I think when you find the right one you’ll be much more at ease about the whole thing.
Those are good places to look. Try to find skull base surgeons who operate on cancer patients if you want to have the entire styloid to stylohyoid removed if you have it throughout the two areas.
I am one of the patients who had the intra oral, 2.8 cm removed, done properly, but never felt completely well. 3 years later I was unable to move my neck and sleep on a pillow. I had to sleep sitting up. I do not have the original CT scan, but the later one showed that the styloid was 3.0 cm and had a knot in about the center that looked like a round swollen knuckle. I assume it started to grow back from there,bc for awhile, I did not feel it, but later, I could.
My skull base doctor said this when I said I should have gone external. He said," There is nothing wrong with the least invasive approach. It is often all that you need". In my case, he said the bone and thickness was impressive and my 3D viewer homemade picture told him that he would be able to operate and most likely give me relief. That was almost 7 months ago. I just had the other side done and recovering cautiously, because I now know that sometimes the nerves wake up a bit angry. So today,not bad. Like Jules said, the end result will be best known in 18 months.