Hi all! My name is Em (she/her) and I’m 33 from Oregon. I have hEDS, POTS, MCAS, and IIH which I recently got a stent placed for in April. As I’ve been healing, I’ve noticed that my symptoms didn’t resolve and seemed to just shift down towards my left jugular. My hEDS doctor and I are pursuing a vascular eagle’s syndrome diagnosis and I feel like I have almost every symptom.
As there are no providers here in Oregon that are familiar with vES, my doctor let me know that she refers out to Dr. Hepworth a lot for this surgery. I have a CTV at the end of the month, and I wanted to see if I could get a good sense of the wait time for referrals and surgery for Dr. Hepworth. I am assuming it is quite a while, but I’d love if folks here could share their experiences around the process from the time they were diagnosed to getting referred, meeting for a consult, and then getting scheduled for surgery.
Hi Em, & welcome to the site! I’m glad that your hEDS doctor has heard of VES, & is working with you to get a diagnosis and treatment, that’s so rare!
Hopefully others can let you know how far out he’s booking appointments… If this turns out to be too long a wait, Dr Nakaji in AZ, Dr Lui in NJ, Dr Costantino in NY, Dr Cognetti in PA are the other Vascular ES doctors that members have had good outcomes with as well as Dr Hepworth.
I recently heard that Dr. Hepworth is booking initial consults about 5 months from now. His initial consult protocol is a bit more complicated than that of most other doctors. The initial consult is with one of his two NPs. Once that’s done, you’d be sent for an ultrasound of your IJVs at one of the Health Images offices in Denver to evaluate the rate of flow through your IJVs at various points along their length. A month or more later, you’d go back to Denver to meet w/ Dr. Hepworth to discuss your CT imaging & the results of the ultrasound, then, if the two of you agree surgery is your next step, you get put in the line-up for a surgery date which may be a few more months away.
Dr. Hepworth did a revision styloidectomy for me & IJV decompression. I think the world of him, but the way his office works is an exercise in patience when you want to make forward progress NOW! As of Sept. 1, he no longer does telehealth consults so your appts w/ him will need to be in person. Drs. Liu, Costantino, & Cognetti do telehealth consults. Dr. Cognetti is booking into April or May of next year for initial consults. Dr. Nakaji does not do telehealth consults so you’d need to see him in person, too.
Hi Em, I am an EDS patient also in Oregon, looking for the same thing you are. Have you had any luck with any of the surgeons’ offices? I have an appointment with Dr. Patel in Portland next week, and I’m hoping he can refer me out.
@Jammit - As far as I know none of the VES surgeons we have on our Doctors List require a referral from another doctor. You could save yourself time & $ by making an appointment with one or two of them directly since Dr. Patel doesn’t deal with vascular ES per se.
I was checking Hepworth’s website today and he does now require referrals. I have reached out to Dr. C and Liu but I haven’t got past the insurance queue.
