Well, after two years a tonsillectomy and two other throat surgeries I think we finally have a diagnosis of eagles Syndrome. My only symptom which led to all these surgeries was the feeling of something stuck in my throat.
My ENT came to the conclusion of Eagles after physically touching my tonsil region and there is a very obvious bone feeling sticking out like a bump. On my right side only where I have these symptoms for two years.
He left the surgery up to me.
He is a very good ENT/Surgeon but said he has never done this surgery, but was confident in doing it.
He said he would do it through my mouth and it came with little risk.
What are your thought is this procedure truly low risk? I trust this Dr but am scared that he’s never done it. I have a feeling he will be conservative and just nib off enough to remove the sensation in my throat.
I think it's better to go to a doctor with Eagles experience, but I also know that there have been a lot of forum members that had surgery from a doctor who hadn't done it before and did fine. I think the most important thing is that the doctor is experienced doing surgery in that area. There are lot of nerves, veins, arteries around there so it's pretty important he knows his way around in there.
There are pros and cons for doing surgery inside the mouth vs externally through the neck. The more experienced doctors usually do the surgery externally, but again, there's been lots of people that had internal surgeries and were completely cured.
But I will say that it's almost always better to take as much of the styloid out as possible during the first surgery. Otherwise it's possible you could still have symptoms and eventually need a revision surgery to get more of the styloid taken out. And it's much harder to find a doctor to do a revision surgery than to do an initial surgery. (I know this from experience.) The thing is, you don't know how much of the styloid is causing problems until you get it out and then see if you're still having symptoms. Usually if people get it cut down to 1-2 cms they seem to do ok afterwards.
I should also say that even if you only get a piece cut out, you're usually better off than before the surgery. Some people live with it and other people are still symptomatic enough that they need a revision surgery.
Surgeons are trained to do surgeries and they monitor the nerves while they're in there (at least the ones I went to did). So after some recovery time, people usually don't have significant lasting effects. There are quite a few older posts about the recovery from surgery, so check out the ES Information tab and look through old posts to get a sense for what people have experienced.
Well, there are risks because it's in a risky area. But that's why we go to good surgeons. Really, there's almost always a good outcome from these surgeries. I've had 5 myself for Eagles. (The reason I had so many is because the first surgery on each side didn't get enough of the styloid out and I had to have revision surgeries.)
But people usually do quite well after the surgery. Like I said earlier, there's a recovery period after the surgery and a lot of times people will have some side effects for a while, but they generally are resolved within a couple months. With 4 of my surgeries, I went back to work after 2 weeks, which to me is the main criteria - when am I well enough to go back to work?
The worst thing people usually get is something called first-bite syndrome, where it hurts (a lot) to open your mouth initially, but that fades after a couple months. I had it after two of my surgeries and while it faded quite a bit after a month or two, it actually lasted about 2 years. But after that initial couple months, it had faded to a degree that it wasn't all that bad.
I also had a numb lip after two of my surgeries. It made kind of a lopsided smile and it was hard to eat a sandwich for example, because I would have to physically pull my lip down to take a bite. That lasted about 2 months with one surgery and about 5 months with another surgery.
One of my surgeries was intraoral and the recovery to me was similar to a tonsil surgery. I think that one took a little longer to eat solid foods, but I don't remember any significant side effects other than that. The risks of infection for an intraoral surgery are a little greater than an extraoral surgery, but the doctors are pretty vigilant about avoiding infections.
Because it's such a confined space, there is a risk of nerve damage- some people have as Heidemt says had numbness in their face and a slight lopsided smile, but this usually goes with time. There have been a couple of members who have been left with shoulder and arm problems post-surgery. Whether that's from nerve damage or from the position they were put into during the op isn't clear. I have a numb ear- it was very numb post-surgery but has improved with time, so I hardly notice it now, and I feel so much better after the op that even if it had stayed how it was I would have still been glad I'd been operated on! Obviously there are major blood vessels in that area too, so there is that risk, but with a surgeon who is experienced in operating in there then it shouldn't be a problem! Any surgery carries some risk! The doctor I first saw told me it was such a risky operation that it would only be done if I was suicidal with the pain, but I found out about a skull-base surgeon on here who I was able to get referred to, and he does it as a routine!
It's a personal decision- some people opt to live with it, but it depends on how much pain you're in, and how your quality of life is. I'd got to the point where I felt so bad and was having scary vascular symptoms, so the risks of surgery were less important than getting rid of the styloid!
Other members have opted for painkilling/ steroid injections into that area of the neck to help them manage while they make the decision or look for an experienced surgeon.