Possible jugular compression, CSF leak, intercranial hypertension. Advice?

[PatientD]

Hi, if you were given the pressure readings for the various venous sinuses in brain it is worth carefully looking at those as it may show an obvious difference in pressures between one side of brain and the other. In my case higher pressures were evident on side with JV compression. They focus on gradients mostly as our venous sinus pressures can vary. But if you can see a difference between sides that supports that there is an issue and I think decompressing JV could help.

While we can survive with one JV only, it is as Dr Hepworth said, a circular system and having both JVs open aids body in using system in way its designed.

Medics seem to think it’s easy for blood to escape our heads. In case of JV compression I believe that is wrong.

Hope you get help you need. D

[jrodefeld]

Thanks. I don’t have access to the actual pressure measurements or where they were taken, but I was told by Dr McDougall that they are technically within what would traditionally be considered normal.

How could I have pressure measurements that are technically “normal” but still have all the symptoms that I have? If I have active CSF leaks equalizing pressure in the brain, this would mitigate the pressure readings that would otherwise be seen.

I also have some questions about the sedation I was given and whether it would have any impact on the pressure readings.

There are so many nuances to this condition that only people on the forefront of research are able to figure out, especially with complicating factors like CSF leaks.

It looks like my tentative appointment date for Dr Hui is March 5th. Hope he’s able to answer some of these questions.

My Cisternogram test to look for a CSF leak in my sinus area is scheduled for March 26.

[Mod_support]

@jrodefeld

There are so many nuances to this condition… …especially with complicating factors like CSF leaks.

Big, BIG +1 for this comment. And it is my understanding (and experience) that those complications can vary for everybody. Initially, when I expressed concern it was all minimised with statements like “The scans do show an issue, but it will all settle…” (only it didn’t) and “Ohh, it can’t be THAT bad…”.

With CSF leaks some people can have what is considered a minor leak with minimal symptoms, but for some with the same leak can have no end of issues. With my initial leak the scans did not show any ‘collection of fluid’ as it was termed, but I could hear the fluid. To me it sounded like someone drinking milk with a straw ‘Oh, you’re exaggerating’ says the nurse… …No, I was not. 2 days later they did another scan and sure enough, they found it.

I do hope Dr Hui is able to answer your questions
Merl from the Modsupport Team

[jrodefeld]

Dr McDougall did do a few provocative maneuvers during the exam, but not many. Mainly he had me turn my head left or right a couple of times.

It does appear that there is some positional dependent jugular compression on my left side.

Left jugular vein - normal:

Left jugular vein - head turned to the left:

This may mean that my venous outflow capacity in the real world, when I’m upright, turning my head and moving throughout the course of the day, could be worse than it does lying flat sedated on an examining table.

Here are some gifs:

Of course, my right side is nearly completely blocked:

One thing that I don’t quite understand is why, when Dr McDougall checked my transverse sinuses, most of the contrast stayed in my right transverse rather than at the area of the actual stenosis at the level of C1. Could there be a second blockage further up?

This is what I mean:

Anyone know why this would be?

I am debating whether I should ask Dr Hui to give me a referral to Dr Hepworth straight away or consider and consult with other doctors such as Dr Hackman or Dr Costantino?

In my situation, I’m most concerned with the jugular compression, but I also strongly suspect CSF leaks. My preference for Dr Hepworth is that he seems to be one of the only doctors who is an expert in both jugular vein compression and CSF leaks. I also worry that I may have some other issues stemming from unresolved thoracic outlet syndrome issues and a possible lumbar spine CSF leak. Basically, it would be nice to see someone who can have a holistic perspective on how all these things fit together.

I was also thinking about what people refer to as “jugular dominance”. I’ve heard people say that so-and-so is “right jugular dominant” or “left jugular dominant” meaning that one jugular vein is larger and is doing the lions share of the work getting the blood out of the brain and back to the heart.

The idea I guess is that in the normal population, most people have one larger jugular vein that is referred as the “dominant” vein.

But I’m not sure if the concept of jugular dominance has any significance in the context of a traumatic injury and bony compression of the jugular veins.

In my case, people will say “you’re left-jugular dominant”. Well, I am NOW given the severe compression and blockage of my right jugular. But was my body designed to be left-jugular dominant?

Perhaps I was born right-jugular dominant but as a result of an injury that resulted in compression of the right jugular between the atlas and styloid, resulting in right jugular blockage and my left jugular has taken over and is compensating?

Maybe this is just semantics and it doesn’t matter much but it seems like it makes a big deal with how doctors assess me.

Presuming my body was designed for my left jugular to be dominant and remove the lion’s share of the blood from my head, a blockage of my right jugular may be judged to be less clinically significant.

However, if they thought my dominant jugular vein was being blocked due to bony compression, they might see it as a more serious matter and more likely to result in severe symptoms.

I might be misunderstanding this, so maybe someone can help me out.

I really appreciate everyone’s help and support. I feel like I’m finally going to be getting some answers and, hopefully, surgery to correct the problem.

Thanks everyone.

[1speechpick]

I’m just now skimming this thread. I haven’t read the whole thread so please forgive me if this is repeat information. Another option to consider, at least for diagnosis, is Dr. Fargen in North Carolina. He is excellent, and is actually really good friends with Dr. Hepworth. He is extremely knowledgable about IJV compressions. Just a thought.

[Isaiah_40_31]

@jrodefeld

But I’m not sure if the concept of jugular dominance has any significance in the context of a traumatic injury and bony compression of the jugular veins.

In my case, people will say “you’re left-jugular dominant”. Well, I am NOW given the severe compression and blockage of my right jugular. But was my body designed to be left-jugular dominant?

You make a really good point here, @jrodefeld. There may be no way to know the answer for sure, but Dr. Hepworth is definitely one of the most “holistic” doctors we have on this forum’s Doctors List & would be a great starting point. I’m certain Dr. Hui will give you a referral if you ask him to. Dr. Hepworth does seem to be taking new patients even w/o referral at the moment so you could try calling his office directly to see about getting an appt.

[jrodefeld]

Thank you so much for the heads up!

I was able to schedule an appointment with Dr Hepworth, so really appreciate you letting me know he was accepting new patients. The bad news is that the appointment isn’t until August 8th.

However, they do seem really efficient. I’ll be seeing his assistant for the intake on August 5th, then getting all the needed testing done in the two following days, followed by a visit with Dr Hepworth on August 8th.

Crossing my fingers that there may be a cancellation and I’ll be able to get in sooner.

I’ll ask Dr Hui to send notes and everything else to Dr Hepworth when I talk to him on March 5th.

[PatientD]

Hi, on dominant Jv topic, yes most ppl do have one JV that is dominant and drains more of blood than other. But it’s a circular system so the body needs to use both sides. In UK medics seem to think blood leaving head is easy as “ so many ways for blood to leave head”. Some patients (eg cancer) survive with one Jv they say. But I think body does have mechanisms to control blood leaving head (or else gravity would take too much blood from head). My own lived experience is that blood leaving head if have JV compression or other venous outflow obstruction is not “easy”. Trapped blood shows up on my brain scans. Also too much blood in head means too much lymph fluid too. So I disagree with Uk medics on this point based on my own observations. D

[vdm]

@PatientD

Trapped blood shows up on my brain scans.

This one is interesting… Could you elaborate more on this please? The blood in my understanding flows like water in a closed loop system, otherwise there would be either air-filled gaps (you don’t want it in your blood system), or vacuum-caused collapse?

[PatientD]

Sure. So when I was at my very worst, before any surgeries, the brain scan showed an area at top of brain and below skull that was “dark and empty” and this was where all the abnormal fluid was trapped inside my skull and pressurising my brain.

On my last scan last Nov that fluid filled area is gone and brain image now fills up skull area.

But as I went through scans myself I can see area of brain below skull at top that has appearance of full white sinus area. It affects my scalp too as I can touch the area affected and it is very tender and swollen. I have learnt ways to help reduce that, but it returns. I have a photo can try to post if helpful. I am still talking with medics on this and other topics. D

[vdm]

@PatientD it would be so interesting to see those pictures! I’m always keen to learn something new, to understand more complete picture of the anatomical processes!

[jrodefeld]

I’m having a hard time explaining the leg symptoms I’m having. I have symptoms of severe pelvic congestion and swelling in my legs along with heaviness and a throbbing sensation.

I may have a lumbar CSF leak and I know that I do have a sacral tarlov cyst that may be compressing some nerves that go into my legs.

Given the severity of my symptoms, I wonder if I should be worked up for something like Nutcracker syndrome or May Thurner syndrome?

Reading through this forum, it seems that a number of people have also had these conditions. Is there any relationship between jugular vein compression and the development of other venous compression conditions in the body?

[Jules]

Yes, we’ve had quite a few members with Nutcracker as well as VES; I think Dr Hepworth has been helpful with looking at this & referring patients, so it’s definitely worth looking into…

[Isaiah_40_31]

It does seem that compression of the IJVs can but doesn’t always portend compression of vessels lower in the body. With your abdominal & leg symptoms, I agree w/ @Jules, getting both Nutcracker & May Thurner checked out would be a smart idea.

[jrodefeld]

Maybe there isn’t any general consensus, but I do have a couple questions for people who have seen or had surgery with Dr Hepworth.

Is it generally the case that Dr Hepworth usually knows right away who is and isn’t a candidate for surgery after his initial workup? I’m just wondering if it’s a common experience that Dr Hepworth schedules many patients for surgery right after the initial visit, or whether the diagnostic process can go on for a while before he’s confident to schedule a particular procedure?

And is there an average wait time for surgery once he schedules you? I’m just trying to gauge the timeline in my mind for how long it will be until someone does something to hopefully fix the problem.

I’ll be speaking with Dr Hui this upcoming Tuesday (March 5). I’ll be asking him about nutcracker and may thurner syndrome, along with everything else. Maybe he could even speed the process up a bit.

[jrodefeld]

I had my second consultation with Dr Hui on Tuesday.

His belief is that I should get jugular decompression surgery on my right side first, possibly my left as well. He thinks there is compression on the left when I turn my neck based on Dr McDougall’s venogram.

He also suggested that he could get me an appointment with Dr Hepworth faster, given I have already been assessed by him as a good candidate for surgery. i was hoping he could “pull some strings” with Hepworth to move things along!

Anyway, a very productive conversation and I’m hopeful I’ll be able to get this taken care of sooner rather than later.

[Isaiah_40_31]

That’s very good news, @jrodefeld. I’m glad your appointments w/ Dr. Hui have paid off & I hope he can pull strings to get you in for surgery sooner w/ Dr. Hepworth. I think someone posted on here that he’s now booking into August, but I’m not sure if that’s for initial consults or surgery or both.

[Jules]

I’m glad that you’ve got some more info about jugular compression and a recommendation for surgery, I hope that you don’t have to wait for too long

[jrodefeld]

Does it make sense to continue to have other doctors evaluating me and running tests, or should I wait until I see Dr Hepworth?

I have a Cisternogram scheduled on the 27th of this month to look for a nasal CSF leak and I’d like to be evaluated for other possible compressions (nutcracker, may thurner, etc) due to severe abdominal pain and swelling. I have suspicions about a possible sinus infection as well.

My concern is that Dr Hepworth will just re-do all these tests or not accept outside testing if it is judged to be inadequate.

I don’t want to waste time running tests that don’t actually get me closer to being fixed, but I also don’t want to wait around for six months or whatever it takes to see Dr Hepworth especially if there may be something serious going on that needs more urgent management.

Any advice on how to balance the feeling of urgency for more testing to see what is going on versus whether it makes sense to just wait to see Dr Hepworth?

[Isaiah_40_31]

I think if you believe the testing you’re interested in having would provide you w/ helpful information, you should go ahead & have it done. I don’t think Dr. Hepworth will require you to get retested by doctors of his choosing unless you want second opinions on some of the results you get.