Hi All, please see my page for my history with Eagles. I still get pain, sometimes excruciating in my left side, mostly the flora of ly south and the jaw. My stolid is approx 6.5cm…so very long. Right side is not quite as long and I get no pain. I am desperate for a surgeon in Australia who’s operated in this condition before. Dr. Alf Nastri (Oral Maxofacial Surgeon) diagnosed me thankfully (first and only time for validation of my pain) but has unfortunately never operated on an Eagles patent and I’m scared :(. Does anybody know of a surgeon in Melbourne who’s operated on this before, or have any tips for me/advice on having this surgery performed by a surgeon who’s never operated on the condition before. Any help or tips appreciated!
Sorry that was meant to say
*mostly the floor of my mouth and jaw
no one that i know of in Melbourne, I am attaching my list. I think there is one somewhere in Austailia. I think I posted a more recent updated version of my spreadsheet somewhere on this discussion. When I find it, I will reply on it to bring it up to the top of discussions.
202-EaglesSyndromeDoctors.xls (35 KB)Emipie, the doctor who did my first Eagles surgery had never done one before. He actually didn't do a bad job surgery-wise in that it was a pretty easy recovery , but all he did was break off the tip of the styloid. It turns out that eventually I needed a lot more taken out so I had to have a revision surgery. So if you could get the doctor to realize how important it is to take out as much of the styloid as possible, then it may be ok if he has had plenty of experience doing other surgeries in the neck.
Thank you Heidemt. Maybe I should just ‘bite the bullet’ and go ahead with it. Very scared though. He said there would be a very big scar in my neck and yeah hasn’t operated on it before. He also never mentioned if I have vascular or classic…,I would assume he doesn’t know the difference. Do you know what the difference is?
The scars I have from my external surgeries really aren't bad at all. It depends on the skill of the surgeon I guess. But when I'm talking to someone about my surgeries, I have to point out the scars to them otherwise they say they wouldn't have noticed them.
I was just looking in the mirror and I think the side where I had two external surgeries is a little noticeable, but it's really not bad at all. But the results of the surgery are totally worth it. When I was trying to get my surgeries, I was so desperate from the pain that I didn't care at all what the scars looked like.
Thank you so much for your support. My doctor was talking about either going in through the neck or the base of the skull. Are these both considered ‘external’. He seemed to think vis the neck the scar would be quite noticeable which as with you I’m not worried about really. Just want no pain but he seemed concerned with it
I don't know. I would just guess that going through the neck was internal and the base of the skull was external, but I really don't know.
I know the doctors worry about the scars. I told one doctor that I didn't care at all about the scar and he said something like that was a walking advertisement for his practice. I never thought of it like that - the more obvious the scar, the less you might think of the doctor's skills. Well, he did good, because my scars are really hard to notice.
Emipie,
I was thinking about your situation, and I wanted to tell you that my first recommendation to you would be to travel to go to a surgeon that had Eagles surgery experience. That is, if you are able to do so.
Thanks Heident. Unfortunately I can’t find anyone in Australia who has. Have put up discussion before on here and no one seems to know anyone.
So was your surgery via the neck? My surgeon is hifhly regarded here on n Melb but not with eagles
My first surgery with the doctor who had never done an eagles surgery before was intraoral and it would have been ok if I just needed part of my styloid taken out.
Emipie, If he thinks the neck would leave a scar, I think it is external. You will have to ask. The base of the skull may be from the back of the neck. If he is that experienced in skull base surgery, he might be the right doc. You need to make an appt and ask more questions about how he would do surgery. Also, if he is doing it intraorally, inside the throat, it makes a big diffference that the styloid that is left is not pointy. They can use a tool to smooth the remaining styloid so that it has no pointy or jagged edges. My doc removed 2.8 cm intraorally and smoothed what was remaining. I can't feel it in my throat anymore. I sometimes have ear pain, but neck therapy has been helping so we think it is from one of my cervical discs at this point. I am not in much Eagle symptom pain lately.
I would suspect with the external surgery, it is also important not to leave any jagged or pointy edges.
Thanks all. Yes he’s a very experienced oralmaxofacial surgeon from what I understand sounded quite experienced with more complicated surgeries than this. But said there was no guarantee removal would take away my pain and slight risk of facial nerve damage. Thinks for the tips. So sounds like I should go for the external Surgery and try to get him to get it all out and if he leaves any he should smooth what is remaining. Emma, how long was yours to begin with?