Probably, once upon a time, these doctors dealt with Eagle’s syndrome, so they got on the list, but they are no longer useful. It’s good that they were removed from the list.
@Jules , @Isaiah_40_31 , I read a lot of posts from this woman and somehow got to know her through those posts. I wondered what happened to her and on her Facebook profile in the last post I read that since three years ago people have been saying goodbye to her, which really hit me.
Thank you for sharing what you know about @Zdravka. It’s very sad when someone who’s spent time on our forum dies. We’ve lost a couple of other members who were very active here, too. It’s heartbreaking. 
No I haven’t. Dr Cognetti told me that there was only a 30 percent chance surgery would remedy my tinnitus.
Have you considered getting a second opinion from Dr. Costantino, @Bc2? It seems w/ the level of IJV compression you have, getting that taken care of along w/ getting your very large & thick styloid removed, you’d surely have at least some reduction in your tinnitus. In cases like yours, we highly recommend getting at least one other opinion.
I spoke with Dr. Larry Lo and if I remember correctly he said the same thing. It’s been a few years. It guess it wouldn’t hurt to contact Dr Constantino.
I think it would be worth your time as living with the symptoms you have & w/ what’s in your neck has got to be MISERABLE!! Don’t stop “knocking” on doctors’ doors till you find someone who’s willing to help you, remembering that doctors base their opinions on experience w/ past patients, but every new patient presents an opportunity for the average surgical response to be shattered, & gives the opportunity for a doctor to learn something new.
I wasn’t sure..,is Dr Hackman out of Chapel Hill still on the recommended list?
Absolutely! He’s recently done surgeries for several of our members.
The symptom that bothers me the worst is the tinnitus noise in the brain. If my tinnitus was caused by the compressed jugular vein would I be experiencing pulsatile tinnitus?
Not everyone w/ IJV compression gets pulsatile tinnitus though it is pretty common. I had IJV compression w/o pulsatile tinnitus but it turns out the cause of my tinnitus is most likely unrelated to the compression I had. I’m missing a bit of bone from my inner ear from a surgery I had to try to save my hearing in 2019. I’m in the process of seeing if there’s anything that can be done to correct that situation.
Unfortunately tinnitus is one symptom which doesn’t always resolve with surgery 
I’m thinking of shopping my situation to Dr Hepworth in Denver. Any info you can share on Dr Hepworth would be appreciated
@Bc2 -
Dr. Hepworth is very experienced w/ vascular ES i.e. the surgery to shorten the styloid & decompress the IJV, however, his office payment policy & cost for a consult changed on Oct. 1. The cost of an initial consult is $900 paid in advance & is non-refundable if the appt is cancelled. Out of state patients now need to pay up front for Dr. Hepworth’s portion of their surgeries ($5k-$7.5k). This is because over the last several years, out of state/country patients have gotten insurance approval, but in the end, Dr. Hepworth never received payment from the insurance companies. This created a cash flow issue for his medical practice so a hard line has been drawn in a financial respect to make sure he gets paid for the work he does. A new patient will have a consult w/ one of Dr. Hepworth’s NPs first then later (i.e. weeks/months) a face to face with him.
Recent patients have complained that follow-through w/ prescription orders & getting help if needed soon after surgery isn’t happening as it should. I have been a patient of Dr. Hepworth’s since 2021 & have minimally experienced the problems others are noting now so these may be hit & miss for patients. I am pretty proactive, though, when I need an appt. or want to get in touch with the office.
Dr. Hepworth is currently booking initial consults in March or April of next year. If you’d like to be seen sooner, Dr. Costantino and Dr. Nakaji are not booked out as far though I don’t know how finances work w/ their offices or what they charge for initial consults.
I hope this helps as you consider your next step.
If I remember correctly, does Dr Larry Lo and Dr Constantino work together? If so a couple years ago I had a consult with dr Lo.
I live in Massachusetts do you know of anyone near me that is on the recommended list?
@ Bc2 - Yes, Dr. Lo works w/ Dr. Costantino sometimes, but more recently it’s been Dr. Tobias working with him. Dr. Costantino is the closest doctor to you who does vascular ES surgeries. Dr. Annino is in Boston & has done a lot of non-vascular ES surgeries.
what do you mean when you say vascular or non-vascular?
If you have vascular ES where the blood vessels are compressed, some of the doctors are more experienced with this- it’s best to see someone more used to this surgery as especially with IJV compression the styloids often need removing very close to the skull base, which not all doctors are confident to do. And also usually they check for any other structures compressing the blood vessels.
All @Isaiah_40_31 means by ‘non-vascular’ ES surgery is if you have the more classic symptoms and no vascular decompression is needed.
Does the group recommend Dr Ryan Osborne in California
We’re a bit wary of the term ‘recommend’ doctors; see the disclaimer at the top of the doctors list:
‘THIS IS A LIST OF DOCTORS WHO HAVE HELPED SOME OF OUR MEMBERS FIND SOLUTIONS TO EAGLES OR WHO SOME OF OUR MEMBERS HAVE HEARD OF. The list is not exhaustive. The intent is to provide a starting point for those of us looking for solutions. THESE ARE NOT RECOMMENDATIONS! Some of these doctors have worked for some members, but not others. Please use your own judgement when determining which doctor to use.’
But Dr Osborne has performed lots of successful surgeries, so if you can get around the insurance issue, then he’s a good doctor to see!
Jules,
I have heard both that Dr Osborne takes insurance and also heard he doesn’t.
Since I’m from Massachusetts but will go anywhere…I’m not sure who to go with. In the past I looked at Dr Hepworth. Dr Lo told me that in his estimation there was a 30 percent chance surgery may help my tinnitus. This after Mr Lo told me there was a 40 percent chance
Thursday 11/13 I’m going in for a cerebral angiogram. Since my vestibular artery was 90 percent occluded it’s been almost a year so they want to check the stent.