Diagnosed After 6 years!

I Was Finally Diagnosed With Eagles Syndrome By A Dr Brian Burkey Cleveland Clinic Ohio…I was Told my styloid is severely elongated n calcified the entire length stretch from base of my skull to my vocal box and also that it’s sitting on my carotid artery…he advised me that he believes I have a l50/50 chance of relieving my symptoms as there are so many untypical issues! Extra oral approach! Anyone see this Dr or Have Vascular ES? Any in put before I decide to have surgery??

Glad to hear that at least you have an answer after all this time.... Vascular ES is scary, but hopefully you'll see a big difference with surgery! Finding out mine was vascular was the thing which made me decide to go for surgery, as I was having some scary symptoms, and knowing the styloid was compressing a blood vessel really bothered me! Although you may have a scar from the surgery, the doctor who operated on me said it helps him take much more out to go external.

Is the doctor on the list of those who've performed surgery? The important thing I think is do you feel confident in him?

Good luck if you go ahead, and keep us informed!

I’m not sure if he’s on the List? As far as being comfortable with him…idk either I only met with him once and he seems to be a very intelligent man but Geesh I’m kinda scared now with the carotid involved:(…do u get a second opinion? Cuz it took 6 yrs to get this far?? I’m not sure what to do?

Gosh how were you diagnosed? Going for CT Scan today for 100% of correct diagnosis. Scared and actually awaiting the call to see if Medicaid has approved the scan or if I will have to wait too next week… Love waiting for answers…especially after everything. Just want it over and answer and out of this Daily misery… Sorry to wake up ill. Jus thought the lady would have give. Me a thumbs up or down by now since my appointment is at 1:30 and she still hasn’t told me whether or not she has gotten it approved. Although she is doing me a favor by fighting it, I basically lost it on the phone when she tried to reschedule it yesterday at 5!!!

It is so frustrating, Ashley, I think we all feel like that at times! I know I'm lucky to have surgery, but can't believe how long it's taken, when I was already diagnosed, to get referred, scanned, and operated on!

Lisa- I'm from the UK so I don't really know the best way forward for you- I know alot of people from the US on here seem to get 2nd opinions, depending on insurance? But that'll mean waiting even longer... The only thing you can be sure of is that it won't go away on it's own!

Lisa, you can go to the top of the HOME menu where the Discussion tabs is. On the left side is a search box. Key in Dr. Burkey and you will find some information from others. He seems to be expert in microvascular surgery and skull base surgery, and he teaches. I know he was mentioned on this site before so I suspect that he is named on our list or perhaps he asked to be removed. Not sure, I don't want to lose my page to look but you can go to the Doctors list. I have posted his bio here as well.

http://my.clevelandclinic.org/staff_directory/staff_display?DoctorID=13548

Cleveland Clinic, OH has produced many of the best Eagles surgeons that we have found, so I think you may have found your doctor. However, you are the one who needs to feel comfortable. Best of luck and I hope you find relief, soon.