Where do we begin? I got the “almost-positive” diagnosis of Eagle’s Syndrome from my dentist this Thursday. This was based off of the CBCT scan the dentist took as well as my symptoms - constant pain/pressure from right shoulder, up over head, into right sinus area; also ringing in ears, tingling sensation in head, possible nausea.
He showed me the scan and ES pictures online, and it does seem like ES. He said next step was to see an ENT but didn’t really have one to recommend specially for ES. We are in Texas and haven’t found a doctor anyone recommends here in Texas. From what we have seen people recommend Dr. S in CA, Dr. C in PA, Dr. H in NC, and Dr. B in FL. Do we start with them?? Or do we need to find a local ENT to help get more scans and then go to a more knowledgeable doctor in the field? Based off of my symptoms, I am thinking it may be VES, which really has me freaking out. Thank you all for your help!
Hi @DRam,
Welcome! It would be best if you could see one an ENT closer to you & mention your tentative diagnosis & request a CT scan w/ contrast. You would need to have your CT done w/ your head in the position that causes your symptoms to increase or worsen. A regular CT w/o contrast doesn’t show soft tissues so wouldn’t be definitive for vascular compression. That said, the doctors on our list who more specifically deal w/ vascular compression are Dr. Hepworth in Denver & Dr. Hackman in NC. Dr. Bunnell has also helped some our VES members recently. Dr. Samji is not a good option if you think you have VES, however, once you have a CT scan disc in hand that you can mail (no USB drives!) to Drs. Cognetti or Samji, they are the two doctors we know will do a video consult so you wouldn’t have to travel to get an opinion as to whether or not they think you have ES. You could choose someone else to do your surgery once you have a clear diagnosis.
There are a couple of other doctors a bit nearer you - Dr. Milligan in Phoenix & Dr. Nuss in Baton Rouge who could both be options. In Dr. Nuss’s case, you need to see him for a secondary problem like your tinnitus as his office staff has put a number of our members off by saying he doesn’t do ES surgery, yet we have several members for whom he has done surgery, & they’ve had good outcomes.
Hi & welcome to the site!
Try not to be freaked out by possible VES- I know it can be scary & the symptoms horrible, but it can be treated & complications are rare…
There are some doctors on the list in Texas but some of the names we were given a while back, it could still be worth ringing the offices to see if they still treat ES? You could then still think about whether to see one of the other doctors you mention.
I hope that you can get an official diagnosis, & treatment soon, best wishes!
Thank you @Jules and @Isaiah_40_31 ! Of course I google VES and it is worst-case scenario about having a stroke, so I am automatically freaking out! I really appreciate the information you both have provided. It helps me process through a little more of what is happening. I was all set to start calling today, only to realize every office is closed because it is a holiday! I am thankful though - it “forced” me to be more present with my kiddos and not so occupied with all of this. I will begin afresh tomorrow. His mercies are new every morning!! Thank you both!
@DRam, Yes to the mercies!! May you feel His peace, calm & guidance as you look for the right doctor to help you. 
Amen to that! 
Hi DRam.
I saw several ENTs across DFW and finally came across one who I felt was knowledgeable about Eagles Syndrome and who had performed the surgery on multiple occasions prior to me. Dr. Chan-Leveno at UT Southwestern in Dallas is who performed my surgeries and who I would recommend you reach out to. I had one side done in July and the other on the 4th of this month. I didn’t have vascular issues, but I have no doubt that she would be a great resource for you on your journey. A local ENT should be able to refer you to have a CT scan with contrast to confirm the diagnosis as recommended by others.
@Skudbucket - I’m REALLY glad to know Dr. Chan-Leveno advocated for & helped you. Unfortunately, she has been very inconsistent in her willingness to help our members from your state. Those for whom she’s done surgery have had great outcomes. I recall she is hesitant to help some because they don’t have specific symptoms she looks for with ES which is sooo wrong & disappointing. We have learned here that ES symptoms are sometimes as unique as the individuals who have ES so defining ES as needing to include certain symptoms puts pretty hard limits on those not displaying the symptoms in question.
@DRam - My comments are not meant to dissuade you from meeting w/ Dr. Chan-Leveno. She is an excellent surgeon. They are more to help you be prepared in case she doesn’t embrace your situation.