Hi all! Take a look at how two surgeons can look at the same scan and say opposite things. Tomorrow I’ll see the third (Costantino).
1 First dr was an Oral surgeon I was recommended to for Eagle S rule-out. He did a Cone Beam CT. Said my styloids weren’t elongated but they were calcified. Said they shouldn’t be visible on the CBCT at all. Then said that because I didn’t feel poking when I turned my head to either side and didn’t have migraines, that his finding had nothing to do with my symptoms. Recommended a neurologist specializing in otology/ears, in Atlanta (I’m in Jersey). Said I might need another scan. But said he’d remove the styloids when I started to feel poking and headache.
Online I learned of dr costsntino (not covered) and made an appt. Then I got a call from my insurance company that they found an in network eagle s dr, Pashkover. went there first.
ENT, Pashkover. Looked at the same cone beam. Said styloids were elongated, 4cm. I asked if they were calcified. He said it’s bone… everyone’s styloids are calcified. ?! First he said the same as the oral surgeon- I needed to feel poking and headaches. When I then said I had other symptoms (choking from swallowing, severe ear and jaw pain, Hypnic jerking, to name a few) he said well ok it “could” be causing that, too. I showed him an article I found on eagle syndrome causing seizures (Hypnic Jerking firing is low grade seizure activity). No need for any other scans. I told him I have an MRI from 2020, which he said he’d look at right before the surgery. Said he’d remove 1-2cm. Said right one needed to go first. Said he does about 2 of these surgeries per year.
Seeing Dr. Costantino (ENT, advanced head and neck) in white plains NY on Thursday. I believe he removes the whole styloid more frequently and does about 10-12 per year.
Utterly ridiculous, this more than 2 decade journey where you hear totally incongruent opinions every. step. of. the. frikken. way.
I’m sorry that you’ve been given conflicting advice/ diagnoses, but sadly it’s very common on here! The 2nd ENT you saw is correct that the styloids are always calcified, they are formed from bone. The stylo-hyoid ligaments which attach to them can become calcified and cause symptoms, but not always. It’s not always possible to tell whether it’s the styloid itself which has elongated, or whether the ligament has calcified & they’ve both merged, but it doesn’t really matter as long as it’s removed in surgery. 4cm is pretty long, but I would be cautious having surgery with this ENT as removing 1-2cms may not be enough to alleviate your symptoms.
You’re right about the other symptoms being common with ES, but no doctor can say for definite that they are all from ES, or that surgery will definitely help, unfortunately for most of us it’s a case of having surgery & seeing what resolves!
Dr Constantino has done several surgeries for members and seems to be very skilled, so I hope that your appt goes well. His office have indicated that he’s keen to help with ES patients.
Will you let us know how your appt goes?
So frustrating for you! We have another member @Oman who’s recently been through the same thing.
Honestly, I have to chuckle whenever a doctor tells someone their styloids are calcified for the exact reason @Jules & Dr. Pashkover mentioned. They are bone, so of course they’re calcified! Any doctor should know that & should use more specific terminology like - “The ligaments are calcified.” or something to that effect if they want to describe something as being calcified in that area of the neck.
Unfortunately, we’ve found that many doctors who perform ES surgery have very biased opinions that certain symptoms need to be present w/ elongated styloids/calcified s-h ligaments before they’re willing to diagnose the problem as ES. Their views are much too limited since the symptoms of ES are multitudinous & vary from patient to patient.
Hi! Thank you so much for explaining all that. This group and the fb group have been a godsend so far. Yes I knew leaving the first ENT’s office that I wouldn’t be going back. I’m headed out now to see dr C.
Thanks a ton
Tracy
Feel for you @Thans, especially as a former tri-state’er. Please let us know how your appt with Costantino goes. Im in the same multi-opinion boat like was said above!
Sorry, hit the reply key prematurely, meant to say, oh yes, this happens here in UK, differing opinions and a reluctance to acknowledge ES and to refer on
It’s sad it’s so hard to get acurate diagnosis. We also have been to many Dr.s and even had to have a revision surgery. I live in Atlanta area. Could you message me the Dr you were referred to? My husband’s main symptom is ears.
@Samom.4 - I’m sorry you’re husband still is fighting this battle. I hope that he has at least some improvement after having several surgeries.
I’m not sure who your message is directed to, but I will say that Dr. Costantino in White Plains, NY is a new name on our Doctors List & he has helped several of our members who have IJV compression & there are others who plan to have him do their surgeries. Did your husband ever consult with Dr. Costantino?
I went there. Didn’t find him warm. I’m realizing I’ve hardly been to surgeons. The black and white aspects are hard for me since I’ve been on such a long journey. Hard to hear dismissive attitude toward things that have helped me (a dentist feeling my neck and suggesting a rule out of eagles, chiropractic adjustments, low dose Diamox), Only interest is in the scans he’ll send you for and hearing top symptoms. If you can disregard doc being critical about things (in my case, the scan I came in with, prior docs insight on my journey, my history of what’s worked), you’ll be ok. Wish I had someone with me at the appt. I had some expectation that I’d learn something new and perhaps for someone to explore a potential bigger picture with me. But perhaps that will happen after the scan he ordered. He is sending me just for a regular head, neck and scull CT. Man, I want to get MRV along with it but I’ll have to wait until he sees if it’s necessary. I am allergic to contrast though so that poses a hiccup.
I appreciate a deeper understanding about the two docs coming up with different interpretations of my scan- he said it’s a dental scan / angle, not a scull view. Which also might illuminate why the oral surgeon who took it, didn’t want to write up a summary with recommendations. ? Insurance co called him, another doctor called him… Dr Cho stayed he’d provide a note from my visit but never did.
Dr C’s substitute (stand in PA) had only been able to ask one or two questions before dr c came in. She then reported my responses wrong to him. At the end she made a very coldhearted comment to me before walking out of the room. It was pretty gross.
Trying not to personalize the coldness I felt with that process. Really liked the insurance guy who works there, he calmed me after I nearly broke down in his office. I don’t feel like I needed to be present at dr c’s appt, he could’ve just looked at my scans and looked at the top two symptoms without my presence. And ordered the CT. It’s like I wasn’t there.He asked if I researched on the internet (not sure why) and said sometimes that is problematic. I think it helped that I reassured him that I didn’t care what my diagnosis was, as long as I got some symptom relief. I’m not sure why he assumed I was fishing for just an eagle diagnosis.
Wonder if I could’ve done it virtually. I would’ve wanted to read someones experience like this before going, this is why I’m posting detail. There was no physical exam. Not everyone’s visit will be like this- for folks new to medical struggles, this probably would’ve been ok. Thanks for listening.
Nope, it happens everywhere!! It’s hard to find two doctors who have the exact same opinion about anything medical!!
