Surgery was scheduled for tomorrow. Preop appt with my ENT yesterday and he was concerned about how deep my styloid process is buried. ENT sent me for a contrast CT today to see all the vessels and arteries and with the results, he is not comfortable doing an external surgery since my styloid is so close to my carotid artery. This was a huge blow to me because I am in so much pain and this seemed like something that may actually provide relief. To add insult to injury, he now says that my since my styloid processes are “only” 4 cm, that surgery isn’t worth it for a “sore throat.” This pisses me off because when he first mentioned Eagles syndrome (I’d never heard of it) and confirmed it with first CT scan, he repeatedly said that 4 cm can cause a lot of pain for some people even though others may not have pain. It’s insulting to have my experience invalidated in such a manner by equating it to a sore throat. It’s far more than that, and my actual throat doesn’t even hurt. THEN, he insinuated that I have a slender neck which likely makes it hurt more. Um, okay. I left that appointment practically in tears with disappointment, hurt, frustration, etc. Thankfully my amazing close friend was with me and the only reason I didn’t fully break down.
So now I am back to square one with finding a doctor that is in my insurance network, a skilled ENT surgeon that actually knows Eagles, and that doesn’t have an insane waiting list. For those of you that had out of state surgeries, how did you go about contacting surgeons and doing preliminary work? I’m not sure I can afford multiple flights to doctors offices. Thanks.
Thank you. His comments were overwhelming and maddening. I was thankful to have someone with me that spoke up about watching the pain progress over the past two years and how much it affects my daily living. I really needed to hear that because the doctor was making me feel like I’m a hypochondriac or dramatic person.
I really feel for you, especially to be so close to having surgery & hearing yourself up for that, but maybe for the best if he’s not confident at doing it!
I’m UK so can’t help with the insurance etc., but I know others have been able to send scan pics to some doctors & have phone consults. You can search through older discussions using the magnifying glass icon on the top right- I just had a quick look & found this discussion: Hoping for call backs from Dr
There is so much ignorance with doctors, even ones that seem to know more about ES- the consultant who diagnosed me said first of all that surgery wouldn’t be done unless I was suicidal with the pain; when things got worse & I had another appt. I asked for pain relief, & he said ‘why do you want that’? !!! I wouldn’t have trusted him with my surgery anyway, he didn’t believe that the styloid processes could compress blood vessels & I had bilateral jugular compression! Luckily I was able to find an experienced surgeon through this site, & he was glad to refer me to get rid of me!
I hope knowing that you’re not alone helps, & glad that you have a good friend with you on this journey. Hope that you’re able to find someone more confident to do surgery. Best wishes, sending you a hug!
I’m so sorry you are going thru all this frustration and I can only hope it helps to know that so many others have gone thru the same thing. Honestly, the doctors are maddening (mild word ) and on the whole seem to have no idea about Eagles. My dentist found calcified bilateral elongated styloid ligaments on a cone beam ct. From there it took me 3 years to ever find a ENT who had ever heard of Eagles. Then it was up to me to try and find a surgeon as it turns out no one in the Rocky Mtn area even attempts this type of surgery.
To make a long story short, thanks to this site and many suggestions, I found Dr Samji’s office in San Jose, Ca. By this time I had a ct-scan, however it did not show measurements but at least confirmed the ES. I contacted his asst via email and she got me going in the right direction. My ct-scan was re-looked at by radiology and measurements recorded. Just an FYI if you get required info from the surgeon, you should be able to just have your PC order the ct-scan to be sent to them. My advice is don’t waste your time dealing with ENT’s if you don’t have to. I sent revised ct-scan & report to Dr S’s office and I was approved and a phone appt was set up with Dr S. I never had to make a prelim trip to CA. I am on Medicare which fortunately allows me to go anywhere for medical care, so I had no insurance issues to deal with, so can’t help there. Everything was done smoothly, surgery appt set with a in-person consultation on Friday, surgery on Monday, followup on Friday and then flew home that weekend. I know there are several good doctors in the country who might be able to help you. I can only attest to my experience which went smoothly, surgery was handled very well without much pain or side effects.
I hope this helps and lets you know you’re not alone out there.