New to vascular eagle syndrome. Help

[MrMoose63]

Im new here. Really lost. I just found out I have internal jugular compression, that’s severe between C1 and styloid. Severe headaches. Pulsatol tinnitus. Neck pain at back of head. Internal tremors. Racing heart. Palpatations. Im in Illinois. Looking for help. Im connected to Northwestern hospital system currently. Seeing Dr. ANSARI. Not diagnosed formally yet. Help.

[Jules]

I’m glad that you’ve found us and hope that we can support you! It’s good that IJV compression has been spotted (not good that you have it, obviously), as sometimes it can be tricky to find someone to work out what’s going wrong, this is a step in the right direction…

I don’t know how experienced Dr Ansari is; with VES it’s very important that the styloids are removed as close to the skull base as is possible, otherwise it might not be enough to ease the IJV compression. In addition, quite a few members who have IJV compression have needed the C1 transverse process to be shaved to help alleviate the compression, and we’ve not heard that Dr Ansari does this. It’s best to get the surgery right first time, as otherwise you might need a revision surgery, and that makes things more complicated, more scar tissue for example. So if you’re able, it’s worth getting several opinions, including from doctors who specialise in this…The doctors that we know of who treat VES are Dr Costantino in NY, Dr Lui in NJ, Dr Cognetti in PA, Dr Hepworth in CO and Dr Nakaji in AZ. They all do C1 shaves if needed, and check for other compressions, as sometimes the IJV can also be compressed by soft tissues further down. You can do online consultations with some of the doctors. Here’s a link to the Doctors List:

Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle

And Dr Costantino has done a video which you might find helpful about IJV compression and the surgery:

Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle

Also some of your symptoms (internal tremors, racing heart, palpitations) could be from vagus nerve irritation which can happen when the IJVs are compressed as the vagus nerve is next to the IJVs. Pain in the back of your head could be from collateral veins, which swell to try and take some of the blood flow out of the brain, this again often happens with IJV compression.

I hope that you’re able to get your imaging sent to another doctor for a second opinion, let us know how you get on!

[MrMoose63]

Hi. Thank you. Right now. I have illinois based insurance and I can’t go out of state but I did contact Dr. constantino’s office. I spoke to a nice lady who took down a lot of notes and I have not heard anything in almost a week.. I know in real time.That’s not long when it comes to these specialized doctors. My plan next year if I can’t get treatment.This year here is to get better insurance.That I can go out of state.

[Isaiah_40_31]

@MrMoose63 - Welcome to our forum! I’m glad you found us.

If you don’t hear anything back from Dr. Costantino’s office by the end of next week, call again. “It’s the squeaky wheel that gets the grease”. Many of our members have found they have to self advocate to get the care they need & part of that is staying on top of doctors offices where you’d like to have a consult when you don’t hear back w/in a reasonable amount of time.

We have numerous members whose medical insurance only covered doctors w/in their states but who appealed that rule when there were no doctors in their states who did the specific surgery they needed. Dr. Costantino’s & possibly Dr. Liu’s offices are accustomed to working with patients who are dealing w/ that problem though the bulk of the work will be on you to get out of state approval.

Many medical insurance companies have a patient advocate who works for them. You should check into this as that’s the person you would work with to appeal for coverage for an out of state surgery. Some members have gone as far as reaching out to their state’s board of health insurance to get help after receiving continual denials to appeals.

Here’s a link to @lilwider’s journey - Update ....final appeal

and one from @vcp02 -

Dr Osborne- Blue Cross Blue Shield Out of Network Waiver-2025

My first bite hit hard on my right side, also where Dr. O had a tougher time. Didn’t realize till a few weeks ago that the symptoms resolved. I am 5 months post op. Dr. O stressed avoiding anything citrus. Do your best to avoid anything that gets you salivating and hang in there. ( Kefir did it to me too lol! )

and finally from @Chrickychricky -

Finally won the insurance battle

Hi friends. A year post my first surgery and Blue Shield of CA has finally paid my surgical claims from both surgeries! After a long battle they finally retroactively authorized the surgeries but then the fun and games really began. First they reprocessed the original claims and then once again denied them. Then they had me have Banner Health submit new claims and they denied those as well…even with the authorization in place. It was a game of procedure codes that I could never win because Blue …

If filing an appeal with your insurance company feels like too big of a project for you at this time, then waiting till next year for better insurance would be your best bet. As @Jules said, this isn’t a surgery you want to have to re-do if it’s not done correctly the first time.