Hi! I’m reposting this from yesterday as a new discussion in the forum. (Sorry if you’ve already seen it.)
I’ve been trying to navigate getting help with Eagles Syndrome, and feel I’m at a dead end. I was diagnosed with bilateral ES 4-5 years ago. Symptoms are becoming unbearable, especially on the right side. (Jaw pain, ear pain, tinnitus, moving floor sensation, throat pressure, headaches…) I’ve worked with pain management and received injections on the right side, at Mayo Clinic, Jacksonville, FL. Those treatments are no longer helping. My Mayo ENT department is not experienced with the surgery and suggested I find another doctor for treatment beyond pain management. The right SP is so long now I can now feel it below my jawline.
I’ve been reading on this site for about a year or so and am now reaching out to you all for advice. I first tried to get an appointment with Dr. Bunnell, in Jacksonville. I have called at least 10 times, left messages and emails, with no success in getting an appointment.
My first choice, however, is Dr. Hepworth in CO. I believe my vascular system is involved, and I feel confident in him after reading about his abilities. After weeks of trying his office, I finally got someone on the phone. She told my first visit must be in person and I would be seeing the Nurse Practitioner, not Dr Hepworth. I have an advocate at my insurance company who verified he is in my network, and also attempted to schedule an appointment for me with the doctor. They were given the same answer (nurse practitioner is the first visit and that must be in person). Is that how everyone from out of state started with Dr. Hepworth? How many trips to Colorado does it take to become his patient and how many in total if I need the surgery? Does anyone have any suggestions about next best steps?
It only takes one trip to CO to become Dr. Hepworth’s patient but it does require seeing his NP Allison Love first then you get a follow-up video appt w/ Dr. Hepworth. When you get through to his office again, make an appt. Below is my response to your previous post in Surgery next week with Dr. Hackman - #32 by Isaiah_40_31 . I hope this info helps.
I’m really sorry to hear about the lack of communication from Dr. Bunnell’s ofc. We’ve had similar complaints about Dr. Hepworth’s ofc & have found that he is suffering from a severe front ofc staffing shortage at the moment. That may hold true for Dr. Bunnell as well.
What Jules said about Dr. Hepworth is correct - first in person meeting is with his NP Allison Love. The unanimous verdict about her is that she is TOTALLY AWESOME so the trip doesn’t feel wasted. You can schedule your surgery after seeing Allison (usually 4-6 mos out). After you’ve seen her she will schedule a follow-up video appt for you & Dr. Hepworth so you can “meet” him & discuss your questions & other relevant issues. As noted, he will require you to get some vascular testing from Vascular Institute of the Rockies. I think that can be scheduled at the same time you’re there to see Allison or if you go a few days early for your surgery. You shouldn’t have to make an extra trip just for that.
Dr. Hackman in NC has also helped a number of our patients who have vascular ES though he doesn’t have a vascular surgeon present in the OR as does Dr. Hepworth. Dr. Hackman doesn’t book out as far as Dr. Hepworth & he will do bilateral surgery so both styloids can be removed at once. That can cause a more difficult recovery initially, but at least you only have to go through it once. I had wished for bilateral surgery when I had mine done, but I saw a surgeon who required two surgeries for that (as does Dr. Hepworth & most of the other doctors on our list).
I’m glad you’ve gotten some helpful info. from our forum & am very happy you’ve joined the discussions now. Good for you figuring out how to start a new topic. The process is a bit cryptic.
Hello all. I wanted to provide an update. I’m scheduled to travel to CO for initial appointments with Allison and then Dr. Hepworth regarding my ES. (May 2 and 4). I’m thrilled for this next step on the journey, and look forward to speaking with someone who understands. If it wasn’t for this forum, I would have continued to feel lost and wonder how much of my symptoms are “in my own head.” Thank you all for taking the time to share and collaborate.
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