Hello
I’m new here and am in the process of being diagnosed. It’s been a very long road, as I know most of you can relate to unfortunately. Been to this dr and that dr and have spent a great deal of money to come up with no definitive answer, until now. I finally find a doctor here in upstate NY that listened did an exam on me and said; “I think you may have Eagles Syndrome.” I had absolutely no idea what that meant so he explained it high level and then of course I came home did the google thing and I was like this is so me! And then I was fortunate enough to land here amongst all you wonderful folks! The dr ordered a ct scan which I had yesterday and well they didn’t do the scan right they just looked for a mass, which thankfully I don’t have and my dr caught that and went and looked at himself and wrote me to tell me you have an elongated left stylohyoid ligament is calcified. Which is why I’m having pain on that side. He doesn’t do the surgery and it’s quite apparent no one around here does. He said he would refer me to this hospital to have it done. I asked him how long they measured on both sides and he wasn’t sure but said we could measure them together at my next appointment which is this coming Thursday. He said he sees about 1 patient every 2 years that has symptom’s so that’s how rare this is for him to see and also means how rare it is for them to do the surgery where he is referring me here. Obviously extremely apprehensive as I don’t want to have more problems than what I have now. So yes for my challenges; for the past several years Drs have thought it might be a lymph node so been on antibiotics several times, obviously didn’t do a thing, what once was a once in a while pain is Now a constant pain in the left jaw. Will wake me up out of a sleep, headaches that no medication seems to correct not every day but when I do have them they are not pleasant, stiff neck, dizziness, brain fog. Now I’m having issues with my lower back not sure if connected but if my neck is messed up I’m sure it just trickles down stream. This has obviously started to affect my demeanor as well I’m a very pleasant person but I’m more short fused and irritable because I’m quite frankly just in constant pain. I will hopefully know measurements on Thursday and have already scoped through the list of doctors however just wondering by any slight chance If anyone out here has had anything done in Buffalo NY? For those of you who have traveled out of state for their procedures how did you find that to be? How long should I expect for me and whomever is traveling with me to be there and is it safe to fly? I appreciate any insight on any and all of this. I’m sure I have more questions but it’s what I have right now to get started. I wish I could fly to CA however it that’s going okay to be too far for me and not an option.
Hi Ddmarie!
I’m glad you finally have a diagnosis! That’s HUGE!! Dr. Annino in Boston has done very successful surgeries for several of our members. He would be closer to you than some of the other doctors on our list. If you click on the magnifying glass icon (above) & type in his name, posts about him will come up.
The fact that you have periodic headaches, dizziness & brain fog might point to some vascular compression by your elongated styloid. If you were to have surgery at the more local hospital, you would need to make sure they would remove enough of the styloid to decompress your internal jugular vein (IJV) if there is evidence that it is being compressed by the styloid. The most usual scenario is that it gets squished between an elongated styloid process & the transverse process of the C-1 vertebra. Symptoms can be intermittent because the styloid moves as you turn your head so it might only compress the IJV when your head is in certain positions.
I agree w/ you that your back pain could be somehow related to your neck issues as it is true that when one end of the spine is compensating for a problem, it absolutely can trickle down (or sometimes up) to other areas. I can’t guarantee that your back pain will subside w/ a styloidectomy but it’s possible. Postural issues can also play in.
In answer to your questions (except about Buffalo), our members have found that traveling isn’t horrible, even long distances, so a trip to CA wouldn’t be too far. We recommend if you are flying a longer distance that, if you can afford it, buy a business or first class plane ticket so you have more room to stretch out & recline your seat, if needed, during the trips.
Typically if you have surgery out of town or out of state, you need to plan to be gone for about a week. Speaking for Dr. Samji’s system, he generally does his ES surgeries on Mondays (& sometimes on Wed.). For a Mon. surgery, you need to arrive in time for a pre-op appt on the Fri prior to surgery & stay till at least the following Fri. for a post op appt before heading back home. I’m not sure what Dr. Cognetti’s protocol is. Dr. Hackman in North Carolina has done quite a few surgeries for our members, & he is one of the only doctors on our list who does bilateral surgery in one surgery for our members who have bilateral ES. Most of the other doctors prefer to do it via 2 surgeries because post op throat swelling can be significant, & they feel it’s safer that way.
Please ask other questions you have as they come up. 
Thank you SO very much for your helpful response! I can’t thank you enough for this! I feel very overwhelmed and this helped me a great deal. I have various other ailments as well like a bit of facial change and a slight drooping of the eye on the effected side and just not sure if that’s all part of this too? I will definitely be reaching out to the dr in Boston that’s a quick flight from buffalo which is a blessing financially. Again thank you for being so kind and so helpful during this very crazy time for me right now! I truly appreciate your time and support!
The styloid process can compress or irritate the the facial nerve, the image shows it’s branches:
It’s a nerve which is often irritated during surgery too, & members have then had the symptoms you mention, not so much before surgery but it’s possible. Very rarely, members with vascular ES could potentially have a stroke from the styloid compressing blood vessels, I hope that you’ve not had any more symptoms of that?
Hi Jules
Thanks for your response. No I haven’t had any severe symptoms like that (thank goodness) however it’s enough to where I’ve noticed personally a bit of a change in myself with the eye and the facial changes. Others probably wouldn’t, but I do with my eye And face since I look at myself everyday. The pain has definitely intensified over the past month in my jaw, through my face. I did have to have some dental work so im sure that didn’t help the situation with my mouth open for 45 + minutes. This was before I knew I had ES. But I definitely am aware of this urgency to get the ball rolling on the surgery, as much as I am scared to do so. I appreciate your time and response thank you.
Have you tried any nerve pain medications? It might help while you wait- there are medications like Gabapentin, Amitriptyline, Carbamazepine etc which might work for you- they take a little while to build up in your system so you’re unlikely to get instant results, but would be worth a try…
I tried gab and didn’t do so hot in it. Haven’t been offered any of the others mentioned. I will bring it up to my ENT tomorrow with my appointment. Hoping maybe he can or will help me in the interim not sure. He’s been great so far so hopefully. I truly appreciate the recommendations! I’m willing to try anything to be some what “Normal” whatever that definition means, lol.
Some members have had steroid/ lidocaine injections into the tonsillar area; it doesn’t always help but for some has helped them through the wait. That might be a possibility you could ask your ENT about?
Hi Jules so ENT was not at all interested in assisting me with any Meds and or other therapy alternative medicines to help me as I did Inquire he’s like heat and ice and OTC, all of which I’ve been doing already without much reprieve. I’m in between with a new primary right now so I know they wouldn’t be helpful. I primarily just see specialist it seems anyways, these days…. I think the ENT I saw is like, he’s diagnosed me and refereed me on and that’s about it. All set with me. I’m grateful at least he was able to DX me, I will put it that way. He wasn’t really able to do a measurement for me either on how long but did show me them and both sides have issues. Both are calcified. Go figure. And obviously the left more so than the right. So now going to have to work my way to getting an appointment with a surgeon. I really wish we understood more why this happens, so crazy. I did have my tonsils out in 1986 but no additional trauma per say since then. It’s all just very bizarre. I’m obviously concerned that once I get one side done the other side is going to cause me issues….seems to be a common occurrence.
Not getting a ton of support from my family because i think they are just sick of me talking about the this issue or that issue the last few years…but the pain and the issues from this is no joke. If people would better understand this in the medical field we wouldn’t have to go to upteen million Drs to get a DX. Sorry that was just my little vent today 
I guess I have another question I’m sorry do things for people just seem to get progressively worse or do they ever stabilize? I am assuming that calcification will most likely just continue to happen right?
Frustrating that they wouldn’t help with any medication! And a pain (pardon the pun) that you’re between primary care docs for now… but on a positive note, like you say at least you did get a diagnosis. Previous tonsillectomy is a known cause for ES, so that could have been it…
So it does vary with people; some have found that they can live with symptoms & that they don’t worsen, but more do find the symptoms get worse. It does seem to be an ageing thing too- the connective tissue is weaker so structures shift slightly, the wear & tear on the neck the same- it may be that the styloids have been long for quite a while, & the wear & tear makes them shift enough to bring them into contact with nerves &/ or nerves. So it’s not necessarily that the calcification continues for everyone.
Not everyone gets symptomatic on the other side & needs a second surgery, although quite alot too. There was a discussion about this recently where several people chipped in to say one side was enough, but I’m sorry, I can’t find it!
So sorry too that you’re family aren’t too supportive, but we do understand what you’re going through, so feel free to vent on here!
Hi Ddmarie,
I’m sorry to hear the way the ENT dismissed you & was not helpful w/ “gap” treatment that might really make a difference until you secure a surgeon. I highly recommend a consult w/ Dr. Annino in Boston. He’s done surgery for several of our members who had good outcomes.
So sad that your family isn’t very supportive but that does seem to be an issue for many of us. ES symptoms can be so wide ranging & come & go then come back that it’s hard for someone not going through the pain/symptoms to have even the slightest clue how miserable it is. Still we wish they could muster the compassion we need when we’re in the thick of it all. I hope you’re able to feel our care & concern for your situation. Most everyone here has been through what you’re going through.
I hope you’re able to find a surgeon soon & get yourself taken care of. As Jules said, get the worst side done first then give your body time to heal (6 mos or so) before making a decision about the second side.
I’m sending you a warm hug & saying a prayer that you’ll find the surgeon who’s perfect for you ASAP!
