I have recently been diagnosed with complete jugular compression when I move my head, both on the left and right. My styloids are both 6 cm. They also saw anterolisthesis of C2 but I do not believe anyone was looking for issues with C1 or C2 because I am dealing with a University hospital where they haven’t dealt with many (if any) Eagle Syndrome patients. They have been awesome in finding out the problem but they are only offering me TORS surgery with removal of tonsil but haven’t answered if they will be able to cut my styloid process back to the skull with this type of surgery. I feel they are ignoring my hEDS and low genetic IgA issues, too. Plus, I am honestly not sure they have ever done this surgery. I have requested a referral for a second opinion to Dr. Hepworth in Denver which might take a very long time. In the meantime, how can I get my images looked at again by a radiologist who understands ES and hEDS? I see them in MyChart (PACS) but no idea how to get them out of there. Any help is welcomed and any ideas of how to navigate Dr. Hepworth’s system would be greatly appreciated. Or any other doctor suggestions are also appreciated. Thanks in advance!
@Wafer16 - It’s a good idea to pick up one or two CDs of your images after you get imaging done so you have a hard copy to pass along to a doctors office & one to keep. As far as getting a copy to forward to Dr. Hepworth, you can ask the imaging office where you had yours done if they can send you a soft copy. If not, ask them to send you a CD or perhaps you can go pick one up.
Here’s Dr. Hepworth’s website link: https://www.denversinuscare.com. It’s set up well & gives the information you need for image uploading.
Here’s the specific information from Denver Sinus Care’s website about uploading images :
When you call or email to make an appointment, immediately asked to be put on Dr. Hepworth’s cancellation list as cancellations do happen & you might be one of those fortunate people who gets an earlier appointment than what you’ve scheduled.
It probably would be an idea to get your imaging checked again by the sound of it- if you have compression of the IJVs by the C1 and possibly C2 processes as well as by the styloids, then you may need a C1 shave as well to have your IJVs fully decompressed. That I wouldn’t think would be possible with the TORS surgical method, and like you say, it would be concerning if they couldn’t remove the styloid back to skull base too…
The other doctors familiar with Vascular ES are Dr Nakaji in AZ, Dr Costantino in NY, Dr Cognetti in PA, Dr Lui in NJ, and we’ve heard of one member who’s seen Dr Babu Welch in TX… I don’t know how experienced they are with hEDS though- I think a couple of members have been turned down for surgery with Dr Nakaji if they have complicated medical conditions, quite a few members with EDS have seen Dr Hepworth though . The waiting times are frustrating though!