Best diagnostics for vascular Eagles/ IJV compression?

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Since I discovered I have ES( now know it’s the vascular type) months ago, I’ve been almost consistently confused about imaging, which makes sense because I’ve been told different things along the way.

I was diagnosed( at least with Eagles via calcified styloids) from a 3D rendering of a dental CBCT that I got for unrelated orthodontic reasons.

Next, the 2nd Eagles surgeon I consulted told me to get a CT scan of head and neck with contrast and a jugular ultrasound based on an Eagle’s specific protocol. Also *as a side note they recommended a CTV of abdomen which ended up confirming May Thurner which I had no idea I had.

At my follow up appointment to review the results of the CT of head/ neck and Jugular, I was told that my left jugular was “50-60% compressed” and that this was happening due to the left styloid and C1. Additionally, I was told that there was scar tissue visibly causing compression ”2mm” below the level of the styloids. Surgery to remove the left styloid/ decompress the jugular and possibly shave C1 was recommended.

In the process of trying to set up some additional consults, one admin at a different surgeons office told me that the imaging I’ve had so far is “not enough to confirm that (I) actually* have jugular compression” or “real vascular eagles( that indicates I need surgery)” and said that I would need to get a CTV of head and neck w/ and w/out contrast in order for the surgeon to be able to decide wether to schedule a consult. She said they have many people who contact the office who “think” they have Eagles or jugular compression and actually don’t. I’m sure this may happen but it was kind of strange to be told after two other surgeons had already diagnosed me with these things.

It’s been a significant headache getting that particular CTV scheduled( been working with my PCP to get it), but I did kind-of decide that maybe it’s better to have more rather than less imaging prior to surgery?

Even if I doesn’t work with the office that was saying I needed a CTV also, I figured that the venogram part of the test might give more detailed information about exactly what’s happening with my left IJV since it is good at visualizing veins in particular(?).

I don’t love getting contrast studies/repeat radiation and because I crash so hard every time I leave the house, it would be great to get everything done in as few outings as possible.

Also, that Drs office left me a VM today that the Dr has reviewed the imaging I already sent and has a recommendation( what I sent ofcourse didn’t include the CTV I’m still trying to get booked), so now I’m realizing that I may have just been told something by a particular admin at that office that may or may not have been entirely true.

Anyway, I’m wondering if others think a CTV w/ and w/ out is very important to get? Or if there are any other additional diagnostics needed( not in just any hypothetical scenario but in my particular medical situation)?

So far, each of these Drs seems to like slightly different imaging and for example, while I found the jugular ultrasound report really interesting and validating( just reading it as the patient), the other surgeons( aside from the one who ordered it) were not interested in it.

I have moderate CCI that has been improved( but of-course is still there to a degree) so I’ve also shared imaging that was used to diagnose that( MRI/ DMX) with these prospective ES surgeons.

The process of actually getting the ES surgery/ finding the right Dr has been a million times harder than I thought it would be since I got diagnosed. I’m very debilitated atm so I really want to expedite this process.

In the FB groups, many people also don’t entirely know what they are talking about when it comes to diagnostics/ other things, so I’m grateful to any knowledgeable people here who might have feedback.

Lately, trying to make progress on the whole Eagles situation has felt like swimming through peanut butter but I also feel like I have to do my due diligence.

Anyway, thanks for reading this boring post about imaging and for any constructive feedback!

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I loved your analogy that trying to make progress on the whole ES situation is like swimming through peanut butter. Made me laugh!! But I’m sorry for your struggle.

A CT with contrast & jugular ultrasound, which you’ve had, should be adequate for diagnosing whether you have IJV compression or not & especially since you already saw a doctor who diagnosed you w/ IJV compression based on the results of those 2 tests.

Please forgive me, but I don’t remember if you’ve posted any of your imaging on this forum. If not, we can take a look at it & give our non-medical, but sometimes more accurate, opinions. If you do elect to upload images, please make sure to remove any personal info on them first.

@TML has received Google drive folders containing CT scans from many of our members which he then interprets & uploads the significant images here w/ annotations which could be very helpful for you if he hasn’t already done that.

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@Glitterbats if you’re able to put the DICOM files into a folder on google drive and then private message me a link to the folder, I can download your CT to my computer and give your imaging a comprehensive look. You’d no longer be anonymous to me but I’d keep your personal information private. Let me know what you think!

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It’s so frustrating! We try to advise (obviously not medical professionals!) about scans, but it does differ with the VES doctors, & even I believe some members have been told different things by the same doctor! For example some have been told by Dr Nakaji’s office that he won’t review patients for a consult without seeing a dynamic CT venogram with pressure manometry, but others have been told to come for testing with Dr Mehta who he works with and then Dr Nakaji will decide almost straight away if he’ll do the surgery! And as lots of the doctors have specific protocols for how they want testing done, we have always suggested to members to maybe wait until they’ve had an initial appointment & see what the doctor needs & how they want it done, so confusing :cry: I wonder if seeing as how the internet is so helpful for getting a possible diagnosis, the VES doctors are getting much busier so their admin staff are acting as gatekeepers? It sounds like you have had enough testing to be diagnosed, and as it’s so hard for you to get out the house for it, I agree you definitely don’t want more doing if it’s not necessary!
Who have you seen & who were you hoping to see? Without being critical of any doctors, this might give us an idea of whether it’s a good idea or not! And @TML will give you help with your scans, he’s a star!
And regarding being symptomatic but being told your compression isn’t that severe, the degree of compression doesn’t always correlate with severity of symptoms; it can vary depending on whether it’s your dominant or non-dominant IJV affected, & how many collateral veins there are which can help with drainage…

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Yes, it was Nakaji. I was told he needed the CTV but someone from his office called and said he reviewed what I sent and made a decision even though I haven’t completed the CTV yet. One of his staff just told me that he is essentially saying I don’t actually have any abnormal compression and he is not recommending surgery( that I should look for other causes for my symptoms). Given that Osborne diagnosed me with ES via my calcified styloids and Hepworth’s NP diagnosed me with left jugular compression by way of my CT and abnormal jugular ultrasound, I find this all very confusing. Not to mention that I have text book Eagles symptoms on the left side and C1 alignment half makes or breaks me( I do have CCI but there is something else also going on).

So far I have seen Osborne and NP Alison Love at Hepworth’s office 2 times( she recommended surgery based on my imaging). I have an upcoming appointment with the other NP at Hepworth’s office and I have sent my imaging over to Dr Cognetti, Constantio and of course Nakagi. Out of those 3, Nakaji is the only one I have heard back from after reviewing my imaging and then, only through his admin with very little additional information provided.

Anyway, that makes allot of sense about the level of compression not always corresponding with symptom severity. Thanks for that info about dominant versus non dominant IJV’s.

Anyway, thanks so much for the info about sending my imaging over to TML.

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@Glitterbats - You should follow up with any office you’ve sent imaging & other info to that doesn’t get back to you w/in a week or two.

I’ve forgotten, do you also have an appointment w/ Dr. Hepworth set up? Seeing his NPs to ask questions is fine, but it would be better if you can talk to him first hand. Since you can’t easily travel, I understand he’ll now do initial consults via telehealth appointments so that would be a good place to start.

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Dr. Nakaji has rejected other of our members but didn’t say they didn’t have vascular compression, just that in his view, it wasn’t bad enough to warrant surgery. We have argued on this forum that is a judgment that no doctor should make based on what imaging, venograms or ultrasound results show. We know, as @Jules said, that % of compression & velocity or pressure of blood flow through the IJV cannot definitively suggest whether or not surgery is warranted. The symptoms a patient has also need to figure into that decision.

I’m still at a loss to explain why you’ve been told Dr. Hepworth is scheduled out so far for surgery. I hope your telehealth appt w/ Sarah will allow you to get on his surgery schedule w/in the next couple of months. Be your own best advocate & press for that!

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Yes, I have heard that Nakaji is very selective but this was jarring to be told that I don’t have compression especially after Hepworth’s office said I certainly do. I don’t know if something was lost in translation or maybe this is his way of declining people now. What I find interesting, is that even before I sent my imaging to them for review, I spoke to one of his staff on the phone who kept saying “if you have Eagles” and “if you have real jugular compression” as if I hadn’t had two other surgeons tell me I had it. I asked her, “do you have allot of people contact the office who don’t really have Eagles or jugular compression/ just think they do, or something?” to which she said, it happens all the time and that only Dr Nakaji would be able to decide if the IJV was really being compressed. If I had never had any imaging and hadn’t already been diagnosed, maybe this would make more sense but in my situation, it seemed like a very odd thing to say. I agree completely with Jules.

I mean, maybe you know something I don’t about Hepworth’s office(?) but most of the people contacting the office right now are getting similar information about how far out he is scheduling. I know another person who just had surgery with him this last month and she waited 6months to get in. Now, the wait seems much longer. I don’t know if with the insurance changes, there may be a chance to book sooner for cash pay only patients but aside from that I’m not sure how to get in sooner. Anyway, thanks for your feedback as always.

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It has been suggested by a former patient of Dr. Hepworth’s that you start calling his ofc every couple of days to ask about a cancellation as those do come up, & even w/ their wait list, I think those appts are sometimes offered to patients who are diligently seeking them vs quietly waiting for a call. “The squeaky wheel gets the grease.” as it’s said!

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I think Dr. Hepworth’s office is pretty backed up still. I flew to Denver to see him in person in the first week of October. In the exam, he referred me for surgery and told me to wait a week before his office would reach out to schedule surgery. As he left the room, the individual assisting him made an aside that it would be closer to two weeks but that I should email them if I haven’t heard back by then.

Two weeks later, I hadn’t heard back so I emailed them. I did get a prompt reply but it stated that they are backed up on scheduling surgeries and that I would just have to wait.

Fast forward to today and I still have not been contacted to schedule surgery. So not only is he scheduling pretty far out into next year, but even to get scheduled in the first place many of us may have to wait.

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That’s not reassuring at all. Im sorry to hear your struggling a well. I first contacted the office between 5 and 6 months go and have had two NP tele appointments so far. I have another NP appointment coming up this month and have been told that I can get on the surgery schedule after this upcoming appointment( because I was able to get all my imaging done locally). So I have not actually met Dr H himself. If they are not able to add me to the surgery schedule after this next appointment or if the date is like a year+ away, that will be pretty upsetting.

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@RobotEagle - I recommend you start calling the office to see about surgery cancellations. It seems there are more in Dec & potentially other winter months because patients get sick & can’t have surgery when planned.

Part of the back-up comes from the fact Dr. Hepworth goes to Hawaii a couple of times a year to work together w/ Dr. Hui in training other doctors to do the surgeries Dr. Hepworth does. He usually goes in the spring & then again in the summer. This year I think he was gone for a couple of weeks in March & then again in July but them months may vary from year to year.

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That’s a great tip. I will definitely try that. For now the delay actually serves me because I am scheduled do get an angiogram/venogram w/ monamotry with Dr. Mehta in early December and then see what Dr. Nakaji says based on the results.

I actually don’t necessarily mind the wait. I just wish they were up front about it so I can plan accordingly - instead of hoping every day that I might receive a call that schedules me for surgery.

Either way, I’m willing to wait for talented doctors (that are in high demand). And doctors I probably would never have heard about until I found this forum. (so thanks to the community here).

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@RobotEagle - You have a great attitude & I agree w/ what you said about Dr. Hepworth’s ofc. Please let us know what you learn from the venogram & what Dr. Nakaji says. I’m so glad you’ve gotten helpful information from here. That’s our goal!

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Just to offer some perspective. I’ve been learning that ES patients are in very different situations. If I was getting a diagnosis a few years in, it would be totally different. I’ve been dealing with this for over 16 years, and at this point I’m somewhere between bed and housebound/ can’t drive/ can’t do my own grocery shopping/ have to wear noise protection at all times/ can only be upright a few hours a day. What might feel like a manageable wait for one person can be absolutely life-altering for someone else. And honestly, if some people can wait a bit longer, I think that’s great because occasionally that may help people who are in the severe category get surgery sooner.

I’ve already spent years being patient through misdiagnoses and delays, so if I sound more urgent now, it’s only because the situation has become more severe. I personally don’t feel like it’s a matter of attitude but just about circumstance. It is important to remember that when we talk about waiting or “being patient,” because not everyone has the same capacity or margin for that anymore.

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It’s a really difficult situation for you @Glitterbats , and we appreciate that some people have extreme symptoms so waiting is extra hard. Like @Isaiah_40_31 says you might be able to get in sooner with a cancellation, but then not everyone can go at short notice either! It’s so frustrating that there are so few surgeons who can help ES patients, especially the VES surgeries…
I felt pretty ill before my surgery (I’m UK so had quite a long wait too), so can sympathise with you, but I was lucky as I hadn’t had symptoms anything like as long as you. Sending you a hug :hugs:

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Yeah, you’re absolutely right. And I definitely don’t mean to discount your experience or pain. I haven’t been going through this for quite as long and I can imagine what years of waiting can do to a person. I just try to remain somewhat optimistic and give grace where I am able (probably more as a coping mechanism than actual patience).

That said, I tend to say things like that on “good” days, and I’m sure two days from now when I’m really feeling it, sobbing in bed, I’ll forget all about being patient and giving grace and simply wish I would be offered a potentially life-altering surgery within the next few weeks (or even get a communication about the prospect of such surgery).

Either way, I’ll update if I hear anything schedule-wise and I hope you let us know how your next appointment goes later this month.

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Hey all,

Just wanted to update that I did finally receive a call from Dr. Hepworth’s office to schedule surgery. They are scheduling surgery (at least for me) as far out as late April at this point. Just FYI for timelines and expectation-setting.

But as others have said, it may be worth while to determine if he has cancellations where you can be squeezed in.

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That’s definitely a cause for celebration, @RobotEagle! :partying_face: I’m so glad you’ve finally gotten a call & are tentatively on his calendar. I hope you get a solid date ASAP & in the meantime, call the office looking for cancellations. It would be great if you could grab a cancelled surgery spot sooner! Please let us know when you have a date.

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